Tuesday October,twenty second,two thousand thirteen. 1:38 PM
Today marks the one year anniversary of the passing of my sister Nicki Ray Muller.
As I sit here in her chair, in the very place that she has written this blog, I feel her with me. With her hand guiding mine, her fingers guiding my strokes typing to you all as to spark a memory, draw a smile, and to hopefully leave you with an overwhelming sense of light, as Nicki herself had always done, and did so well.
I named this post ONE in thinking of the numbers that have always played a part in my sisters life, especially the number 13. Together 1 and 3 make 4, My mother, my father, my sister and I. Without the 1, leaves us three. A square to a triangle, a triangle that seems to be an arrow pointing to the future, a continuum. She has gone to a better and brighter place leaving us here, us 3, and all of you, to continue her memory for as long as your arrow may take you.
I felt compelled to write to you all on this day to express the gratitude we have for each and every one of you. My family and I thank all of you who continue to support us, and who continue in making Nicki's memory eternal.
As I sit here I no longer feel sadness, or pain. I feel proud to have had a sister that meant so much to so many.
I know in my heart that she will be continued by all of us, always.
108. Friday September, seventh. 8:33 AM
There are many questions to discover as this world continued. I have been moved quickly to new places. My ability to read and write is quite difficult. There will always be questions. What I do know is that I need to keep going. I need to keep positive- no mater what. Never stop moving. -Nicki Muller
PRESS "MAKE A WISH"
107. Thursday August, ninth. 6:51 AM
Finding It All Again
"Make a Wish" has been such an amazing experience that has moved me in so many ways of this living. I never knew the power of others continued me with such strength. I meet Nigel Barker at the age of 13 after fighting my first bone cancer with Make-a-Wish. When I finished cancer treatments I continued on with the power of living. I started making work in high-school and continued on studying "Art" and learning what creation and "Art" really is or could be. I began to consider myself as an art maker. I believe calling myself an "artist" is a title from creations of others. I make work. That is my purpose here in this world. I began making completely new work. Images that I created were quite dark and intense to say the least. Within days of dark and confusion I was diagnosed with brain cancer. I never knew this life was heading my way. Life is an interesting experience to say the least. I now continue this life with power that fuels me. There is power in this world if we give it strength. I believe in the power of this living; this creation. I have been continued and I am thankful. I am here. I am alive.
106. Thursday August, second. 10:05 PM
I have been moved. In more than may ways. I feel powerful with the ideas of this life. I feel power with the ideas of those who enter me; who excite me; who know me. This world gives me much question but more so purposes. I have been continued by the human spirit. There is great power among us. I am open. I am aware. I am alive. We are here for reason. We are here for purpose. WE ARE ALIVE. I see this world for fantastic being amongst us power. I thank you. -Nicki
105. Tuesday July, Twenty-fourth. 3:03 AM
Time; Yet Power
I reach time in new places where I often find them odd again. the experience of living meets me in new ways often lately. the perception of this life has changes through time. my making had created new ideas at the for-front. I question creation on more levels than ever before. After viewing the Kusama Yayoi show yesterday I feel rejuvenated. I feel alive from from these powers that met me. The work that surrounded my existence met me so strait forward. Seeing such work reminded me of power purposes that invigorates my bones- my eyes, my hands. Making has given me purpose yet again in this life. The hands of others livid with the minds of another live through me. I am strong. I am powerful. I am woman. -Nicki
Over welled with amazing experience at The Whitney Museum
104. Thursday July, Nineteenth and twelve. 1:01 AM
Many have come
Words have entered my way yet again today from email; from family. Every day I often wonder if I will have the power to keep fighting- to keep writing. It was a tough day for me yesterday. I'm not exactly sure why but I sat in the hospital feeling extreme pain. The feelings bother me most when there is no clear reason of understanding. My writing has always been a way to find reason and make sense. I find myself frustrated at times that is not like me. The body has many questions- more so lately and its hard.
I received a fantastic email from a family member in greece. I cannot thank her enough for sending her thoughts.
The words of others have saved me day by day. Putting my trust in others has been today's experience. I thank my cousin for her reach out toward me. I needed it. Your power has been felt. Thank you. -Nicki
103. Monday July, Ninth, Two-thousand and twelve. 7:47:34 AM
His Words Give Reason To More of Mine
When are you updating your blog; I need my fix!!! I know a bunch of students who check that site often. In fact, are we allowed to make a request? Is there a chance you could write one that describes the advice you would give to aspiring doctors? I remember that a lot of the med students who attended the painting class were struck by your observation that the resident you once had almost never made eye contact. Perhaps if you're too busy to write a real blog post you could just throw together a list of things we need to remember when we become doctors, sort of like a list of observations you made throughout your journey - including things you would change about the hospital experience and your doctors?
I know it's a big request, but it would be so important coming from you. If it's okay with you, I would then like to share it with the rest of the students in my class.
Let me know what you think!!
It overwhelms me to believe that works moving from one mind to another moved from me early this morning. It was as if these feelings fiqed through me amongst others. All of you who have written me in the past have always given me reason and purpose towards this living. It was been incredible to have written words to you right before I received words from another. I have thought often of you all. All that have written to me; have read through me- this is what I believe to be the reason that I still am here. The power of others to make such incredible chooses amongst such living. Meeting so many others stilling their craft has moved me in so many ways. Having conversation of question and reason has transfixed me through time and gas restore my belief in this humanity. Any conversations amongst though that find great interest in the jobs mentioned are an excitement to me. These gives me even more reason to know wheres conversations continuum my reason and better my reasons; better my hope and better my mind. -Nicki
102. Monday July, Ninth, Two-thousand and Twelve. 5:26 AM
My tracks travels in new directions. There is much I've lost that once seemed easily readable. Works are more difficult to find. Keeping positive in the ideals of mankind is essential to each day I am greatest to. Positive interpretation through this livelihood has keep me forward. Silence amongst my self at certain points has made me more aware of the complexity of this life. This life we are all greeted by, met amongst. The strength of others has be as important as ever. The meeting of complete stranger has become humans of incredible importance and reason. I often think through these experiences meeting these travels of humanities have come more clear than ever. The people of my past, those of my dreams, those of my future love through my thoughts-my reason. There are may questions that meet my way. I am only meet with more questions that can never be entirely answered. I have believed it is essential to be okay with these at the end of the day. I have so often given up of thought through words sake because of these questions of the unknown.Silence amongst darkness has saved me over and over. There may be reason for the unknown. "I make work". -Nicki
101. may sixteenth two thousand and twelve. 11:13 pm - 11:30 pm
Message sent to self: May 13, 2012 1:22:24 PM
Memory is a fantastic thing. I have continued this living for a year. Whatever this living is. I have returned to the date of my first entry here discussing my journey through this living. Now meeting that date again I feel a page in my life turning. I find myself freeing my mind in new ways and becoming new yet again. Hearing myself talk about it to a friend today made me more conscious of how very surrounded my life is on my health. On my sickness. On my treatments etc. yes these are important reactors of this living but it cannot be the only focus. I have learned something about myself through all this. I do not like to be bored and I don't like to be weak, physically or emotionally.
Today at Pins for Pauly, a fundraiser benefitting those who face cancer. I was lucky enough to be a part of such a humbling honor. I am used to seeing family members of mine express their thoughts and condolences but I got to meet a whole new group of family. Singing koombaya my lord as paulie did I too feel a need to being peace of living. It has taken a bit to accept this life entirely. Facing it emotionally- facing it spiritually -happened yet again to me today. I thank the entirety of Paulies family I have been welcomes into. Today I was taught the need to remember it all. To live all and see the magnificent beauty among us. The beauty of belief. This is what has continued me. To believe in an idea. To believe in power. To believe in one another.
I find myself returning to the many numbers that lead me in new directions. Diagnosed at 13 gave me incentive to look forward and carry it with me. I have explored and been exposed to 7. I have found its recent presence in my life. Perhaps 13 and 7 are switching. Perhaps they work together. Maybe this is just time telling me more about this world. The equations of numbers build as time continues. Math must make sense if approaches correctly. I was never too good at math in high school but numbers have become more interesting to me than ever. I work with perhaps the opposite side of my brain in my creation that explores art and words. But numbers are an entire different breed. I believe in the ones that point me to new ideas and hope for fields of new discovery.
I type these thoughts amongst the dark of my room. I think clearly here. There is a certain understanding of this world. That there will always be question. Questions must not destroy us but allow for growth and greater knowledge. Greater knowledge of the person we can strive to be.
Satisfaction if life has to do with an individual acknowledgment of our place in the world. I think to the millions of sand particles on the beach I met with and how they stood under the feet I stood on. The only person that could do the hat work for me, was me. I needed to accept myself and my life first and foremost to make it through this living. Those that have lifted me and gave me strength are forever with me.
It is late on the night and I feel at peace with this world. I feel blessed. I have been continued by all those who have lived with power and purpose on their step. I feel ready to move on to more days of this living. Truly lucky and truly blessed. Without another I am nothing. With them all I am Nicki Muller.
It's nice to meet you. I have always been found of the color blue.
100. may fifteenth two thousand and twelve. 10:35 pm - 11:20 pm
i discovered the cover of this LIFE magazine when google searching the woman i had met in the NYU cancer oncology clinic after receiving a massage treatment from her. i knew there was something magical about this woman the moment i met her. the way she carried her self, the way she spoke, the way she moved, and the way she practiced her work. there was something between us both that immediately connected us. i was aware of something but was not sure of this something until today- when the world felt even more connected than ever. not even sure of where the conversation stared but we began discussing art. seamlessly, i discussed my reason for creation unknown till right after my brain cancer diagnosis. we discussed powers that we have been influenced by. powers that have saved us. powers that have continued us. i received an amazingly intense strength from this woman who sat in front of me as i sat enwrapped in white cloth and entirely enwrapped in our conversation. the reason for the unspoken connection from the beginning now became more apparent. after i mentioned my need to create quickly- in a manner that felt necessarily rushed; creating an image of a head with dashed lines surrounding it- almost as if they were indication markings for surgery. all of this work created before the high grad glioma was found in my head. an entire book was made in the two weeks before the tumor was discovered. following my story we had more discussion of making and continuum. she then open my eyes entirely with her story. she too had faced incredibly jarring places. experiencing an entirely new perception of life. i am still moved by her story and sharing that information with me woke me up as to why i do what i do. why i believe in this life. as she sat in front of me telling me about her journey from death to live it became more apparent why we felt something strong that has brought us together.
before i had this talk with Gunilla that made me feel understood in so many ways i was told she worked as a model in her younger years. i then found these two images online attached to her name. the cover image of the magazine TIME she modeled in depicts a woman receiving the 'latest form' of radiation to treat cancer patients. i then discovered another image of her modeling amongst other women. she was positioned all the way to the left where her right are is not pictured. this coincidence has also brought me to question and divulge into the powers of my life to hers. this may seem ludicrous upon reading, but when sitting across from her today discussing our experiences of this living, and our belief in this world, and the powers amongst us all, i felt alive with energy for this world again. there is patience with this living, but there is an understanding or appreciation that cannot be met with words.
i have been waiting for the right time to write about Gunilla or simply mention her new found presence and positivity in my life. there is reason for everything i do believe. we are lead in to new spaces upon others for a reason. we have to learn to respect time for its abilities and necessities in which the world carries out. i believe in the powers i have met and i believe those powers can continue me. those people have continued me. living is a magical thing; we cannot take this time for granted. i thank Gannila for her magic- her purity and truth to this world. -nicki
99. may seventh two thousand and twelve. 8:20 pm - 8:56 pm
i think about what i'm supposed to do- the life i'm supposed to live. the experiences i must greet- take part in. i've always laid pressure myself to continue with power. to live my life with a strive towards success. but whom or what is it that I am receiving that idea from? i believe it lives within myself. i have to perform past my initial thoughts of success. perhaps this is impossible. perhaps it is for everyone. we are only truly satisfies with ourselves in moments of clarity i believe. at least for me I feel compelled to better myself- to constantly continue my abilities, better my ideas since i have been continued. i began this continuum thinking only of each and every day as it greets me. however it is my ideas i experience that branch my living onward to the future. there is great reason for these moments we choose to grab or let fly past us. also interested in catching those thoughts is how i have continued. on my way the other day the butterfly that caught my eye staid on the side walk as i grew rear. as in grew closer to the butterfly it staid put. ruled its ground. owning that moment, that space, its power. i chose to sit a few seconds and watch its stillness and then continued my way onward , leaving the buttery it's it's spot on the pavement. this is what it means to greet a fantastic moment of life, of living and continue on as it always does for us all. -nicki
98. may fifth two thousand and twelve. 4:18 pm - 4:38 pm
i came across the thick lime green ribbon in my draw from when i held my first fashion show in high school- all the models, my friends, wearing vibrant lime green ribbons tied around their arms represented the girls who had past in my life, all of different cancers. all whom i met at the age of 13. finding this exact ribbon today gave me no excuse to be upset or frustrated with my living. others have met these grey threatening places way more than i have. who am i to sit here and fall deeper into sadness? yes i need to acknowledge my emotional pains and experiences that have effected me but i cannot dwell there for too long. i have been given the chance for living yet again. i must be thankful. there is great positivity in this lime green that meets my desk as i type beside it. it is a wake up call they have sent my way. those girls who past at young ages give me reason to move forward, to let go of any anxiety i may have with my ideas of living and continued creation. this lime green reminds me. of how very lucky i am. -nicki
97. may third two thousand and twelve. 10:23 pm - 10:42 pm
there's a magic in this darkness. there is beauty in this silence. i feel my mind at peace when this world is mad simple. there is something true that greets me in these dark rooms. there has never been a time as comfortable with meeting the dark as it is now. my life has changed through the set and rise of the continued sun. i feel at peace in the moment of silence i meet the dark with in this living. i feel most alive but most gathered. my breath centers my body as i indulge in the moment. my ears ring and i am reminded i am still here. the images meet my thoughts on the canvas of infinite space. the space within my mind that gives birth to new ideas of new imagery to be created. new sound to be spoken. new feeling to be felt. my words are of the night. of the dark. there is no weakness here, only power. power to accept the darkness as the other part of the brightness. without the experience of night there is no day. we must try best to understand each facet of our living. of our powerful purpose. i feel rejuvenated by this confined realization of individual power and individual presence. to truly see yourself for what you may be head on. to get to know the being that you are. we all do not get to know ourselves enough. perhaps this is my realization of the darkness that excites me most. i learn things about myself i never knew existed. pure magic in these dark spaces that leave the mind for question. -nicki
96. may second two thousand and twelve. 12:48 pm - 1:17 pm
shades of blue
through the time span of the past few months, i have come across many new individuals that i have gotten to know by ways quite different from a simple hello and simple exchange of character. these relationships are much more meaningful to me.
i have always recognized a women in my church wearing shades of blue. there was always something mysterious yet fantastic about this women. it was until this year that she was but a mystery to me until one sunday she came up to me in church expressing her regards of concern and hope for better heath in her comments. she expressed her hopes and prayers of positivity for my health. every time after this first meeting of two, every sunday she received her communion and then made her way over to the opposite side of the church to check up on me. the conversation was short and included her satisfaction from seeing me looking and feeling better. as the weeks continued she became a powerful proscenia towards my survival. sometimes it takes a complete stranger to step to your prescience to make you realize the beauty of this living; the exchange of power from one human being to another. across those pews, amongst those words heard, she felt my need for her prayers perhaps through the thoughts of others mentioned; through the words written in our church paper, through the guidance of greater powers. i do believe in the many powers that exist among us that lead us forward in good health and positive perceptions. the positive powers of people is another blessing i truly believe is what has continued me. i knew it was necessary for me to somehow give thanks to this fantastic women dressed in blue. i decided to gift her a small painting using mostly blue hues. if there was a way to describe the color realized from this women and my experience of her, this painting would aim to do so.
at one side of the canvas i inscribed mt reasoning for such a work. it read, "For you, your kindness, your strength, your thought, I thank you."
yes i have felt power of positivity from those close to my living. but i believe it is the attention of a stranger in such profound and genuine manner that has moved me in new ways; has saved me in new ways. i thank Ann for all her help. i thank Ann for all her courage for making her way to my seat in church and sending me such positivity and hope through her blue vibes. i'll see you soon next sunday, as always. -nicki
95. april twenty ninth two thousand and twelve. 12:32 pm-1:31 pm
all week has been a bit emotional for me as i meet the year to the day i was diagnosed with brain cancer and operated on. tracing those steps at the current time was a jarring realization that so much time has passed. to believe i have been continued this far through this living was a blessing yet a trying one for sure.
yesterday became all too real for me as i woke up four in the morning thinking. thinking too emotionally about the day approaching. thinking too seriously about any self confirmed limitations in my lively hood. i forced myself to discard of the thoughts and return to a deep sleep. i woke up tired. tired of this living. i woke up feeling defeated. there was no medicines to blame the emotions on this time. i pushed any frustrations asides as the day continued. right after dinner i felt extremely tired and felt pain in my neck as i often do. it was not only physical pain that jarred me but emotional pain. within a few minutes i found myself in tears as they grew longer and heavier as i continued and explored my thought. i have been through so much for so long and i felt tired. i felt exhausted returning to the exact dates. would i be able to continue and make it? would i be able to win against these powerful cells? will my arm be able to hold up until i am able to have surgery on it to fit any weakness in its construction? will my shunt malfunction when i am unable to receive surgery? (since i am undergoing chemotherapy surgery is not an option for at least a month after the Avastin is taken). time had scared me. for one of the few times i met uncomfortable situations this day of the one year mark was one of the most uncomfortable and stressful for me.
i sat on my bed with tears down my face and a pit in my stomach. when will this all end? when will this sickness be over? my two parents sat next to me knowing much of what they had to say wouldn't change the emotion i was experiencing. i needed them there- just to be there; as they have been for the entirety of all battles i have faced in my life. i have always had the support of my parents, battling these sicknesses alongside me. i could not be more thankful in knowing if all else fails i have the love and support of the ones at my side.
this has been an odd week for me. returning to the places-mentally- where i was a year ago. this morning i sit across the breakfast table where my father often takes me. my father begins discussing his experience in high school then planning for college and deciding his interests to study. he then mentions and continues with his experience getting drafted in the army that same year of life. he mentions the different thoughts he experienced over in Germany where he was sent at such a young age to live with complete strangers, battling completely new sets of problems that he never even thought of here at home. my father mentioned how allow he felt that first night he was drafted and having to be on watch at the start of it all. sitting there feeling completely lost. i've heard all my father's thoughts on the experience many times. but today it meant something a bit more personal to me.
this fight my father had to meet with at such a young age was the same fight i was fighting at such a young age. different in context was similar in the idea of the psychological battle. how our experiences effect us is not often addressed. i have been far from meeting my second illness last year, i thought. only to find myself face to face with the exact date of that first scan telling us i had a high grade glioma in my brain.
i could not walk away from this any longer. the day went by slow enough to catch me around seven pm. it felt like a collection of memories and thoughts pushed aside were too powerful to escape unnoticed. the one thing that entered my day lie in the video interview of photographer Nigel Barker. the words he spoke reminded me of the strength it is to continue. the strength that i felt i held the other day but lost today. it was crucial for me to receive such compliments in my perception of living. it reminded me just at the right time when it was needed that i need to look up from the emotional pain i found myself trapped in on such a day. i have lived through cancer once- i will live through it again. and by 'live through' i mean making the best of every second of this life. cancer is not a curse i have decided. it is just another way of dealing with things. if it is one assigned to me i must be okay with it.
i think back to all of those kids when i was thirteen attending the hospitals and having to receive chemotherapy and treatments alone in the hospital oncology unit with no parents of theirs in sight. understanding parents who need to work long hours etc. i felt truly blessed to have their constant in-person support. my mom and dad switched so they could keep their jobs, support my sister and continue this family. i think of all the sacrifices they had to make in order to keep me as healthy as they could. there was many tough days and many happy days. i remember many things of that experiences that at times frighten me more now being treated for cancer at an older age. nothing is ever easy. but no one said it would be. when looking back to age thirteen what i battle now is easy in comparison. 'easy' is a definition different for everyone i suppose.
my thoughts continue and make loops amongst all these recent and past ideas of my livelihood. i come to these circles where emotions scatter between unhappiness with my situation to complete happiness with my living. i suppose we all have moments of combative thoughts held within our self. life is not easy but no one said it would be. i've said this before and try best to keep reminding myself. these are the positive experiences that i need to focus on. whatever the many things are that have saved me and continued me are the very things i need to focus on. it is incredibly important to reference the past and dwell in the moments needed, but to continue i must pull myself out of these darker places. i must allow those around me to pull me out of those places of question and doubt.
i have noticed the power and necessity of others. -nicki
94. april twenty-fourth two thousand and twelve. 3:18 pm-3:52 pm
time stops or does it
i woke up to my clock reading 12:00- thinking i woke up unusually late. i then grab my cellphone to check any messages and notice it is actually 9:35 am- not the 12:00 pm i saw on the digital clock i've relied on for many years. i question why it is that the clock stopped from its intended functions only to display the 12:00 time. after taking the plug out of the wall and replacing it, i was still meeting the 12:00 face to face. the red light from the one and two along with the pair of zeros stopped. the time had stopped in time. it was a framing of a moment- numbers that represent an increment of the day that we call mid-way. there have been so many of these numbers we pass through without full recognition of their identity. i think of photography and how it is capturing a certain image of time that has passed. the images that illustrated the continuation of life. there is always now, there is always then [past]. for some there is tomorrow and for others there is the idea of continuum. lead by the idea of day by day thinking. the halt of the clock that sit next to my bed in its own world stopped. time has never and will never come to such a halt. perhaps because this clock has been through the series of medical experiences and diagnosis's i have encountered and it is ready to end its telling of time. it is fine with simplicity of illumination of a moment in time. perhaps this halt, and illumination happened for the specific reason to remember this idea that there may be moments where we feel time has stopped in our living but there is still light. the numbers are still illuminated, despite a confusion in the telling of time. i do believe these signs that come my way have told a powerful story through this livelihood. as i grow closer and closer to the day last year i approached the computer and discovered i could not read. the day i was sent to the hospital in NYC to then have brain surgery performed on my tumor. i remember bits and pieces of the recovery process after getting out of surgery. most of all i remember the dreams i had during this time. some familiar people would appear in these magnificent tropical jungles and forests of incredibly tall trees where homes were built on top of and the colors of the land surrounded me; invigorated my being. the dream lead me to climbing high trees leading me to constructed jungle homes where my long hair meet the kindness of other women and men and families of those who lived in the jungle. i knew it was the existence of these creatures in my dream that protected me, saved me. after waking from that dream, i thought of these creatures often. being in such a space that i was- dealing with recovery of such a surgery as my own was a battle. i haven't recalled this dream for quite a while. didn't even realize i would remember it now as i type. that dream continued me. i was free there. i was free from pain or illness. i was protected by creatures, just as i feel protected by my parents or family. just as i have been protected by any animosity for my living. when i am not on any medication, same old nicki, i am happy with my living. that 12:00 image halted on that shelf next to my bed brought me back to those dreams. those magnificent dreams that enlivened me in spaces i at the time could not physically be in. however mentally i could and can explore the world. these ideas have given me more appreciation for the incredible ability of the brain. yes my brain has faced different challenging thoughts- but what i have acknowledged is its chance to be continued. time has halted for me in my dreams as my clock now remind me of. -nicki
93. april ninetieth two thousand and twelve. 9:05 am - 9:35 am
dealing with osteosarcoma at age thirteen was one thing but visiting weaknesses again at age twenty one is another. now i am not talking about weakness in my memory or brain i am still talking about my arm. having had surgery at age thirteen to remove my tumor and some infected muscle while and bone replaced with a donor bone with thirteen screws and other titanium structural supports. with limited range of motion in my arm as well as limited strength, i grew to live with this arm. this new arm became a part of me. i became okay with these changes because of the power of adaptation. i never really thought people looked at me differently because i didn't look at me differently. if anything i was even more powerful with such an experience. i sit here seven years later with another experience of a week right arm. the strength i thought i built up over the years wouldn't win over the passage of time. the arm hardware would eventually call for either more or a change. i guess thinking of my head for the past year i haven't paid attention to my arm. the effects of chemotherapy weakening the bone may have a lot to do with my current situation. the one positive effect is that chemotherapy weakens the possibilities of cancer. what it does not ensure is strength anywhere else. so this pain in my arm began after a great night out with my high-school friends. we danced all night just like we would always do, no matter where we were. i had a chance to get away from the medical world for a night. i could dance like a normal twenty one year old female worried about nothing. it was nice. the next morning i woke up to a weird sensation in my arm as we got ready for church. something was not right. we went to the local emergency room instead and i really believed my arm was in pieces all moving around. because that is what it certainly felt and feels like. after the scans were taken and observed the local doctor said nothing looks out of place from the original scans we brought in from previous x-rays. across the way i saw a father and his teenage daughter starring with huge eyes across the way at the doctor holding up my arm scans. i glanced over across the way acknowledging the fact that yes some people are not incredibly comfortable seeing this scan right next to the person it belongs to. seeing this scan of an arm that looks more like a machine from a movie. so thing is i need to get this checked out further by my surgeon and see what he has to say about the whole issue. at the appointment we discusses art and creation while he threw in his thoughts on my right arm and its future. as the incredible surgeon that he is, Dr. Lee conducts his appointments with his patients in a very interesting manner. i can tell his mind is always working, thinking fast and forward. while juggling more than one thought at a time Dr. Lee makes it aware that he has an incredible mind through these slight actions. i believe in his craft and knowledge and will always do so based on his abilities to continue my life. after some discussion he knew this time would eventually come where another surgery would be needed on my arm. new surgeries with new methods have been created for a situation such as my arm. however right now is not a time to operate because of the chemotherapy i am on. i have to wait at least a month to operate on anything. i knew this agreeing to this new form of chemotherapy as it does put risks to your livelihood. but then i think living is a risk on its own. might as well throw some medicine in there to continue my living longer. what is a bit frustrating is living for the time with a painful and weak arm. having to be even more conscious of my right arm is a bit frustrating under the thoughts surrounding my current dealing with a brain tumor. it is just a bit too much at times to handle it all, emotionally, physically. it is hard but no one said it would be easy. -nicki
92. april fourteenth two thousand and twelve. 10:33 pm -11:12 pm
i feel a sudden rush to gather my thoughts. i have felt continued over and over again and have finally felt at a stand still approaching these very days. these days that so vividly remind me of the two weeks before diagnosis last year. it has been odd for me to approach these spaces of time and memory; facing and confronting new challenges, physically and emotionally. how i make sense of my reality has been from keeping myself busy to now facing the dates on the calendars head on. within days it will be last year exactly that i were to start a new week not being able to comprehend my email. not being able to read the text in front of me. that idea playing back so clearly frightens me every time. to busy my living with new projects, ideas for making etc. i have ignored facing the realities of my living. of course nothing has been completely ignored and overlooked in my living but it has been fast forwarded by my own decision. i wanted to pass through this wave quickly. now a year later i am still battling this cancer and i am still dealing with its effects on my body. time has gone by and to recognize it and analyze it for what it was worth is a lot to take in at this moment. attending church this past weekend triggered these memories for me. holy week in the greek orthodox church is a combination of intricately performed services and beautifully moving hymns. it has always been a week of inspiration to me growing up. last year it was a telling weekend that lead to the discovery of my brain tumor. i remember not feeling right then. this time around i felt overwhelmed being in church one year later. these memories shake me a bit. its scary to think i'll ever be in that beginning start again. to even fathom that is possible perturbed me. i came home after friday night's service when jesus passes feeling incredibly emotional as my eyes gazed out of the car windows as we drove home. my family carried conversation assuming i too was involved in the positive mood. i felt as though i was drifting further with each word. i was falling in thought. falling in nervousness. in worry. thinking about the time my battle begin last year. i needed to slow down. slow down from all the medication and slow down with my thoughts. a cup of tea with one of my amazing professors elke also made me slow down these past few weeks. this rush to continue my work has been a grand distraction from my illness. the rush to continue my self was put in focus and that is what scared me most. creating work has been the very thing keeping me active in having purpose to continue at all. distracting myself from facing my illness head on has been the temporary answer for me this entire year. declaring it 'okay' if my life had to end after december- after my first art exhibition Bone to Brain showed. i told myself i would be happy with showing the work that i did and living the life i lead until that point. i would be okay with it. but thing is it did not end there. a new year started and i did not know how to make sense of it. i was continued by the time of time but i was not fully woken up to my living in the first place. like a gust of air this year began passing by and receiving chemotherapy and other medications to de-swell my brain i was further distracted instead of the previous semester of classes and surgeries paired with the harder chemotherapy pills every night. fall should have been seen as even more insane to think of it. my shunt was replaced three times. that was all during the semester of classes. the only way i did all that i believe is by not fully accepting the fact that i am a 'cancer patient' i don't think those commercials will ever make me feel proud. i don't believe i will ever feel great pity for those who ask for it. i have a lot of thoughts of the idea of the 'paitent' that bring me back to when i was 13. i guess i have always been bad at that role. sometimes it's better to be bad at a role because you learn something from it. you take something from it. recently i have realized my attention to my self. or lack there of. the attention to the physical medical emotional experience of this entire year of living. it is time to look back and look forward, continuing the power of the now but revitalizing the experience of such. i cannot be stopped and downed by these thoughts of my past but rather further educated and empowered. i have let them dull me the past few weeks and i am not okay with it. taking the time to realize, recognize and then continue has been the true challenge for me. it is hard to face a lot of things. most importantly it is hard to face our own lives that we are living. -nicki
CONTINUUM April 2011
91. april ninth two thousand and twelve. 8:28 am- 9:14 am
the time i grasp to sit and type seems to shrink as the days go by. my living feels as though it has been bettered through time. i have been lucky to have made it this far in this world. so much is to be explored. so much is to be known. i have been thinking of the journals i kept the three weeks before the brain tumor was unveiled. furiously making work with what seemed like no solid intention at the time, was incredibly influenced by the sickness in my brain. i know this now, almost exactly a year to the day i woke up and could not read. i reference that sketchbook with the jarring references and wonder how quickly it all happened, and yet how did i not act on it sooner? its almost as if my production was trying to tell me something. what my hands were making lead a crucial experience of the brain at work, finding inquisition in an experience of living. i still question the connections of the work i created before i was diagnosed. it becomes a mixture of ideas further than my comprehension. the power of the brain threatened me greatly in this experience of living. to take conscious notice of that is what facing cancer, yet again, head on, meant. facing it and having the will to beat it was certainly a task. again time trickles through my space and i find myself coming closer and closer to the start of the tumor discovery last april. the idea of coming 'full circle' plays in my mind. the circle that serves as my continuums. the circle that i made as a painting the same week i was diagnosed. there is something quiet about this painting. something discovered and undiscovered. layers and question lying amongst an ambiguity. this was my mental experience at the time of making. this is what landed on the stretched linen. there is so much wonder in this painting for everyone who passes by. there is great question in it all. these all exist for me as well. that is beauty of creation. that is the beauty of living. the unknown can elevate us to new spaces of life's interpretations. i have recently been recalling all the events that were happening this exact time last year before diagnosis. everything stands out to me. i remember it all. i believe there is reason i should. there is reason i was continued and i must take not of that. i must explore simply driven by nature and desire to make. there is so much i need to learn about this living. so much i need to learn about this time- this body through time. so much about the being that i am. this living will never be made simple. and that is the beauty of it all. a complex inquiry we can approach simply, aware of great power but willing to face and challenge it. i have challenged these powers. we have all faced something great by simply being. i look to this circle and i still do not fully know where it leads me. i look at the painting and the white space around the image surrounds me. only now i feel color again. i see color again in my work- in my creation. it has never been more important in my creating than now. i am alive. i am thankful. i am in color. i am in creation. i am in continuum. -nicki
90. april fourth two thousand and twelve. 8:09 pm - 9:53 pm
of living through creation
my life has been in full speed this entire year so far. my ability to create has been furthered. i have been pushed and guided by new ideas fueled by new energies. at times these energies were effected or altered by prescribed medicine to control the many issues involving my brain. i have become a variety of creators in this past range of months. the year started new for me and also as a bit of a shock to me. mentally i prepared myself to be okay with my life finishing after my first art gallery exhibition Bone to Brain 90.13.20. i had mentally come to terms with the fact that i lived a great life so far in the age of 21. i came to terms with the end of the year aligning with an end of a life. the end of my experience. well, i was wrong that time had it planned for me that way. i didn't have to make sense of the idea of death- leaving this world- because i was here to stay. 2012 began and the world certainly did feel new because i was continued further than i had ever imagined. a new year meant more time. a new year meant more living. that gift is greater than anything else. the gift of time also meant more opportunity for me to make. to continue my obsession with making. my obsession with inquiring about this world i have journeyed through in specific and unique ways. every day has been a true blessing for me. every continuation of my breath has been acknowledged. if i know nothing else of this living, i am lucky- i know that.
i have continued this life through making. now given so much time to live, i felt that it has been necessary for me to create. this is my experience of furthering myself. what has recently furthered me as an individual is the article written by a New School Free Press student at The New School University. i met Jill in one of my psychology classes last fall semester. i had noticed her handing out and placing stacks of papers to place throughout the many New School buildings. i had been wanting to get in touch with an author at the paper to see if anything i had experienced over the past year of my life would be of interest to document as a story. i guess i wanted to get someone else's take on my story i had be living through. Jill and i kept in touch over the winter break and quickly after that the words exchanged. the meetings continued. the photographs were shot. the article formed just as quickly as my thought to ask Jill what her name was in the NYC street near one of the New School buildings near Union Square. i introduced myself and from that very moment of impulse so much has been made. Jill Heller followed my every move over the past few months. she was incredibly inquisitive about my past, my current and my future at all times. her questions made me relive much of my experience of making, and furthered my own personal questions i have of my work. she joined me for the NYU Medical Painting Class i held last month. she watched me orchestrate the lecture, answer everyone's questions, and teach the class of NYU medical students. she was a pair of recording eyes. documenting this experience as it happened. it was a really interesting experience continuing with these interviews with Jill and her photographer partner Stephanie. i remember them clicking on their voice recorder but also remember not being conscious of it at all. i spoke with them like old friends. filled with questions i knew i was dealing with talent. that made me sure that what would come of all these photos, questions, visits, more documentation, meetings etc. would be fantastic.
i had no idea she talked to all of those mentioned in the article. until recently reading it i did not even know she knew how to get such personal quotations from some of the contributors to the story. all of the amazing people who have entered my living were sought out by another to reference me. i am humbled over and over again. i have nothing but amazing things to say about all those who commented on me. it is an amazing feeling to know you have impacted another life in a positive manner or a manner of intrigue. i suppose everyone hopes to be remembered in some way shape or form. here i was just hoping to be continued in this life, and i am being known and remembered for much more. there is something overwhelmingly fulfilling in it all.
at the latest exhibition of SKIN which i shared showing work with Jeesu Kim and Laura Heinzinger a crowd filled the gallery. everything we had worked for as a group came together as the night continued. we shared many ideas over the past months starting last fall. creation and making serve as incredibly important to us all. it was gratifying knowing others shared such an interest in this experience. soon enough the opening night of our show was here. time has moved so quickly these these past few months the show landed right in front of us so quickly. we began installation and as soon as we started hanging the group of fake and natural tree branches our ideas for our initial sculpture changes drastically. working together forced us in new spaces with new ideas and new excitement. another mind and its collaboration with another mind and yet another leads to extraordinary things. things that could have never been discovered by one. this is the beauty of art making amongst groups. creation shared is creation furthered. this is something these women taught me this past week. so involved in my own head with my own thoughts of creation, it forced me to open up and take it what others understand about making. both Jeesu, Laura, and I discussed everything we installed. a group show, a group collaboration, a group set of decisions. i thank them both for all the inquiry, all the ideas, all the work and positivity.
my good friend Rachel Greco came to the exhibition and hooked me up to a microphone and recorder along with a film crew throughout the exhibition floor. documenting my every word and move through the entire exhibition was an entirely new experience for me to encounter. as the night continued i completely forgot about the camera around me. the exhibit slowly died down with the crowds of inquisitive on-lookers. Rachel pulled me aside and asked me to answer a few questions of hers. Rachel would be inquiring about my experience with a second cancer, brain cancer, and creation. asking the array of inquisitive questions was nothing short of the Rachel i have grown to know and love from high school. i had hoped i did her questions justice. i don't know much of Rachel's current project just that it involved my living in some way shape or form. i have always found a strong woman of great talent in Rachel and with that would trust her with anything. i look forward to continuing our work together with her Fairfield University film crew team.
at the end of the exhibition night i sat in a hallway of the Fine Art building on 13th street in NY, NY across from a camera, my friend Rachel, surrounded by her crew and my good friend and event photographer Hayden Manders, answer her final few questions of my experience of the exhibit. the night was coming to a close and it arrived so very quickly. i was surrounded by fantastic people. this living has continued and yes it is amazing. these are the thoughts that passed through me. i rose from my stool and headed towards my parents located in the main space of the exhibit by my paintings and by the empty food table. all the wine was gone and the food plates barren. most definitely many people had traveled through this space. i am happy for such a positive turn out. my mom is fiddling with a stack of news papers next to the empty food tray. my face sits right next to it all. the article has been printed.
A SURVIVOR'S CAMVAS lay the title upon The New School Press in bold. there was an image of me sitting on the flood in my home amongst all my most current work from this year. i reach page 8 and 9 and find the double page article about me. about my story. about my living. about my experience. about all those who have entered into my life. all those who have influenced and continued me. i am humbled yet again by the work and appreciation of others around me. to see an article online is one thing. to see it printed in press is another. there is something so real about this paper's tangibility that raises me.
i leave the exhibition to head back to long island with my parents and i simply cannot believe the life that at one point seemed complete has opened to new fantastic places, to an awareness of a new incredible living. yet another set of examples of my continuum here on this earth.
i reminisce of seeing all those who attended the show and humbly thank you all. to all my friends, all my friends of friends, to all my doctors, oncologists, surgeons, orthopedics, social workers, art professors, art curators, art makers, friends, parents, sister, my family, my one, his family, etc. the list goes on and on. you all play many roles in my livelihood and i have taken notice to it all. i thank you. over and over again. my work continues. -nicki
THANK YOU TO EVERYONE INVOLVED WITH SKIN, THE NEW SCHOOL PRESS, FAIRFIELD FILM & MY LIFE
89. march twenty-seventh two thousand and twelve. 9:54 pm - 10:42 pm
the bruises that i am okay with
i wake this morning with a sense of relief. "amazing response" was two words i picked up from today- from the email sent from the doctor who was in charge of my radiation treatment i received this summer. the emails all came in from the list of doctors who have been on my case, monitoring my living.
there was something right for me yesterday upon waking. i started creating as soon as i got up from bed. i started with ideas that made fun of myself for experiencing swelling in my face from the decahedron i have been taking to ironically de-swell my brain. i guess you can't have it all. i referenced charlie and the chocolate factory when Viola turns into a blueberry after eating a delight from the factory without asking. in this moment i too felt like Viola all blown up and odd looking. creating was my way of taking something so real for me and making it okay. making feeling fat in the face comical. being okay with not looking like myself and continuing. positivity varies with the varying medications i have been on and with decahedron i will take happy when i can get it in its purest form. before my face grew slightly in size i was up most of the night, hyper, and full of child like energy. now that i have continued and time has passed the medication has new effects. i began taking the brain de-swelling meds with great negativity emotional effects. me and decahedron have been up and down and up again these past few months of de-swelling my brain and swelling my face. it is a weird experience to say the least.
regardless if i look like i ate too much cake recently, i received fantastic news yesterday. fantastic news indicating that the tumor appears to be gone. the edema is reduced. edema is the fluid in your brain that appears when trying to get rid of all the dead cells. all these dead guys came from the radiation and chemotherapy treatments i assume. the idea that i just like to produce all kinds of cells could be why i ever had cancer in the first place. the way i work naturally is a bit complicated for this living perhaps. but i have come to terms with that and it is okay. i have to battle a bit of strange cells at inconvenient times in this living but who gets to pick the right time for anything anyway?
yesterday i entered the MRI scan waiting room with a bit of unknown confidence. i was okay with my living. i was okay with the fact that this is where i was at this moment in time. they called my name like they always do the many many times i have been there over the past year. the one thing that stood in the way of me and this MRI was the veins that run through my body. the nurses have been finding it harder and harder to access a nice juicy vein that is willing to get its blood donated. by donated i mean used for the intravenous they need to attach me with to put the MRI contrast through during testing. three pokes here, two up there. my veins are too small. or my veins are too weak. i should have drank more water last night. i hope i don't need to get another port put into my body somewhere. why can't something be easy for once dealing with this body? there were all thoughts running through me as i ached in agony every time they would prick and search for the vein that would hopefully work and give the nurse- now three nurses- my blood access. once they hit a vein it didn't matter what had happened before. the pain all disappeared. they had accessed the vein- that is all that mattered to me. i apologized for any tears and any signs of discomfort, and for any of them having to deal with that. they all expressed their sorry-s that i just didn't feel right taking. this was my prescience that caused any of this frustration. the three or maybe it was four women who all aimed to draw my blood were fantastic in handling the situation and i could not commend individuals enough for doing that work. i know i sure would not be keen on finding my vein with a nettle if i had to.
i entered the MRI room as i asked for the standard ear plugs as they added extra cotton. i was appreciative of this seemingly small activity that meant everything dealing with the loud sounds about to come my way. my head and body were strapped down and in like usual and i closed my eyes as the bed moves in the tube-like machine. incased in i have the ability to glance up at the mirror from what is located in front of me. i thought that was smart whoever came up with that idea. for a quick second you don't feel entirely encased in the machine (only you totally are). after having done these scans so often they have become meditative for me. i almost enjoy them. there is something about the sound that is methodical and continuing that brings its listener to new spaces and new thought- continued thought. it has taken me many of these tests to relax my body- my muscles- and my mind- my thoughts. i remember being at a young age basically freaking out in these machines; where now i tap my feet to the beat of the test in the room as i lay flat extremely still from the waste up.
i felt at peace.
my father has always been in the room with me whenever i have to take these tests. he sits in a chair across from the machine with ear plugs in. i hope it is not as loud for him as it is for me. his prescience means everything to me. couldn't say i could be okay if he wasn't always there for me.
"I just looked at her scan. She has an amazing response in the brain with near total resolution of contrast enhancement and decrease in edema." sent by Dr. Narayana MD from the Department of Radiation Oncology and Neurosurgery
words could not be more powerful than they are to me right now. how these words have been arranged to convey an experience of living. my current truth. my current state of health. i am okay. that is what these words mean to me. if i am okay today i am okay. to hear someone say this is everything to me and my family. to anyone i find friendship with. to anyone i find strength in. to anyone i see passion in. there is reason for this living. perhaps it will never be truly discovered in its entirety but what i do know now is that we are continued. i am continued. i am very much alive. -nicki
88. march twenty-sixth two thousand and twelve. 10:04 am - 10:15 am
i have found myself often quiet in my use with words lately. i have found myself typing thoughts on here and then quickly removing them as if they are not worthy for discussion. i find myself in these spaces whenever i am on to something wit physical creation. at least thats what i am starting to believe of my practice. when i use my ideas and hands and skill to make something else that is beyond me or outside of me i often loose my connection with words. it is difficult to always be on point with reason and production. words have great power. making work with words has great power. different but great. i dwindle in these spaces and find myself currently floating. between a humane survival and an ephemeral space of creation one can call art. sometimes i find myself questioning if there really is a true definition or word worthy of its existence. my questions of this living will constantly continue. perhaps this is why i have silenced a bit. quieted my outpouring expressions or experiences to make sense of it all for my self. i believe silence is crucial. i believe darkness is important. as its opposites are just as valid. taking note of this life has been what has been passing through my head lately. taking a deep breath to my experience and noticing this life for what it is or what power it contains. moments of silence; moments of blank canvas, all have the opportunity for music and bright, powerful color. -nicki
87. march twenty-first two thousand and twelve. 8:51 am- 9:58 am
a lot has happened. a lot of life has happened.
Photo: Rachel Greco
it feels like time is speeding by and the music in my ears continues. the music in my living continues. i haven't felt many moments of normalcy in my livelihood and i have always been okay with that but lately i have had the chance to live again. and not to live like a cancer patient but to live like a healthy individual on this earth. it has been a long time that i haven't ignored my sickness and went out with friends at night and not worried one bit about my health, my further, my MRI scans, my X-rays, ANYTHING. it has been crucial for me to stay in the positive, i know this. but it is even more crucial to feel human and alive. i can not comfortably settle with patient as my title. that is not the only way to categorize my living, if a way to categorize it at all. i played the radio this morning as the sounds exist right behind me as i type. i usually work in silence in my room against the window when i type these entires. i usually isolate the moment from the abundances of any moment in hopes that i won;t be distracted from the toughest that begin in my head. i have accepted living in this world and its complicated and elaborative spaces that involve many many factors. sometimes we need to make peace with these multiplicities. sometimes we need to confront the fast pace and live in those spaces. this reminds me of my differences in living home in the suburbs versus my past living in the city. this is why i consider myself an individual of two spaces; two places. the city and the suburb. these two spaces have fueled different work looking back and moving forward. i see how my habitat has effected my work, my mood, my experience.
my thoughts continue as the music continues. they bounce back and forth to the past week of all of the amazing things that have happened for me. i once wondered if everything i believe is amazing really is to others. and then it didn't matter one bit. if it means something to me, it is everything i fell, everything i believe. my truth and my definition or understanding of this livelihood propels me. i then find myself thinking of the other night where i orchestrated my first official college art class. this has been my dream since i was very young. at a very young age i found myself climbing into my mother's closet for a set of high heels and old sunglasses i could pop the lens out of to make myself seem more official sporting them. i would grab an old suit from the 'dress-up' trunk and prepare the lesson plan for the day. i would set up two seats, one for my yiayia and one for my papou (my grandmother and grandfather). whenever they were in town to visit they knew it was time to play students. i took on the role of planning the lessons, grading the papers, disciplining, and continuing with teaching dance to my yiayia after class so she could make some extra points on her low grade i had given her the week before. i taught her to dance. that meant i taught her to dance the best way i knew how which mostly involved me twirling around which ever way i decided as best. i declared the 'right way' as my own way. whether it be teaching or dancing i was always confident in my decisions, or creations.
i think of these moments in my childhood as the beginning of my career. the very beginning of this livelihood. i always created. whether it was a lesson plan for my grandparents to a potion of flowers and leaves in my backyard with my neighbor friends. i was always making, working, interacting with the world and people around me at a young age. i have noticed now that i have always been attracted to this world. fascinated by this living. enriched by new experiences whether anyone else defines them as bad or negative or amazing and positive. i guess i have always defined my perception of this livelihood. whenever anyone questions or has questioned my perception of this living i am thrown off. this is how i guess i felt before getting sick last year. i felt confused about this living because i felt misunderstood by those around me. mostly in my new environment of the city. perhaps i needed more time to convince everyone my reasons for making. my reasons for the creations i manifested. but the problem at the time was that i didn't know them myself because my body was angry with me. the tumor has taken control over a part of my brain i believe to effect my attention to who i grow up with. my self had darkened. these are ideas i wonder about often in thinking of my second diagnosis and how it all played out.
i sat in the NYU medical center as i unloaded my bag of past sketchbooks and older work created before i was diagnosed with brain cancer this past spring. i felt nervous to soon sit in front of a group of fifteen or so medical students all around my age and older, to discuss my life and my making. where would i start? of course i have been thinking about this for the past three weeks and ever since the idea of teaching a class came up. i believe we are always thinking, always churning ideas through our minds. it is only when we start to pay attention when they become actualized as thought. this has been my dream to be a teacher. any kind. to plan a lesson with reason and purpose that educates a group of individuals previously unaware of a subject or experience. i had this opportunity to educate highly educated individuals. highly intelligent and inquisitive individuals. this is everything to me. if i do nothing else in this livelihood, i have done something powerful in this moment.
i started my lecture with my story at age thirteen. then quickly trailed on to my current battle by firstly explaining my art practices and how they predicted my current battle with brain cancer. the class all sat before me as i told my stories, surprising myself how quickly it all flowed out of me with such reassurance that this is the exact space i was meant to be with the exact words i needed to speak. i did not loose the class' attention for one minute. once i finished my lecture i asked the class to then ask me whatever they wish. i was then met with a mixture of inquisitive questions both personal and medically based. some scientific and some more emotional. i enjoyed this spectrum because it furthered my understanding of their understandings. after a few more raising of hands the questions became about what was to happen next. i then disturbed the project i had hoped would inspire the class to paint today. i opened up a folder i had made of all imagined i created the week before i was diagnosed with brain cancer, which included a stack of black and white images of sketchbooks and a psychology book with a human head on it. only i made these copies completely askew and jarred as when i photocopied them i twisted the book while the light scanned the image to be printed. at the time i had no idea why i did this. i just did it because the image created was interesting and new. the black and white pages printed out completely jarring and twisted; malfunctioned images would be the proper term to call the. these mini malfunctions that i created on this copy machine referenced what was actually occurring in my human head as the tumor continued to live breading cancer through my cells unknown to me.
the entire class laid out the images i provided on computer paper in black and white on a table within the classroom. i asked the class to do one specific thing for me after referencing these images i created. i asked for color. this ask for color had to do with my current presence in this living. all of my work created before my diagnosis this past spring was made in black and white- void of color. now in recuperation and hopefully survival i have been introduced and become friends with color again. color has entered my life again and i discussed this with the class of students about to paint.
the work created was fantastic. yes this group is a bunch of medical studies but they all had artistic inclinations. the discussions continued as they painted and i walked around having conversations with the medical studies in the room. as the night continued it felt like i was just hanging out with a group of old friends. music by outkast was playing on pandora when i returned after washing my hands from some paint, which always seems to end up on my skin, and it felt like this group really connected to this activity, this moment in time, this experience. i found such purpose in the entire night. i felt such purpose in my living weaving through that room of medical students, seeing all the amazing artwork they created, asking all the fantastic questions they had. i got the chance to be an art teacher, fusing my medical experience with their own. fusing my love for creation with their own. sharing my livelihood and experiences, and beliefs with their own. i felt complete in my practice. i don't think this feeling comes around too often for a lot of people. i am blessed for all of the attention the class gave me. i am blessed to have called any creation for that day a result of my existence. this is everything to me.
when i talk about the importance of others in life i point straight to this experience as example. these people have continued me and have enriched me. they have reassured me for this living and this practice i so believe in. i simply cannot thank them all enough. i continue just as i hope they continue. practices as doctors and practicing as art makers.-nicki
a special thank you to Robert Spencer for attending my first exhibition BONE TO BRAIN 90.13.20. and asking me so many questions upon first meeting. also a big thank you for staying in touch and deciding to plan the Gift of Time painting class lecture and project entitled An Event with Nicki Muller.
HUGE THANKS TO EVERYONE WHO TOOK PART!
YOU HAVE CONTINUED ME.
86. march thirteenth two thousand and twelve. 7:35 am - 8:24 am
in the wake of the night in the dusk of the morning i continue
it feels so long ago since i really stopped and written here upon this computer, upon any notebook for too long. i have constructed activity for myself to take part in every day to continue my living. to keep me 'busy' they like to say. well 'busy' is working. since i didn't continue my classes for this semester i was worried i'd be left with too much time- which i know i am not good with as an individual because i need a consistency of production, or action, of production. that is probably why this past summer was so rough on me physically and mentally because the radiation and chemotherapy would make me extremely tired at the simplest of tasks. becoming out of breath was no joke when i took a short walk around the block. i remember relying on using my bicycle after the first main surgery once i got somewhat better to keep me active. but even so i was never as far traveling as i used to be. i had to acclimate to a new kind of space i existed in. i had to become okay with this world again and in new ways. this summer was rough. on my physically and mentally continuously. right into my fall registration and class schedule and production. yes i made myself return to class because that made me 'okay'. i was not okay but if i mentally believed so perhaps this hard time would pass. if i convinced my brain and body that i was over this cancer, past this disease, and that my body was functioning properly again, then it would in reality and i would be continued. i had hoped to be continued but i gave myself until the end of the year. mentally i just needed to finish the year. have my solo art show, be recognized for it and i was good. i was happy with that. of course i had hoped i'd get the chance for more living but i had come to terms with my life ending. i really did. with the new year of 2012 january was odd to me. i was still on plenty of medication and feeling odd. but i was continued. and that kept me going. the idea that another day wasn't ludicrous and actually very possible. so january started to play by and then february i started to feel my body revive. with decreasing the chemotherapy that killed intense cells all last year to nothing and then starting my new chemotherapy drug this past month i am a completely new individual than the woman i was only a few months ago. it has almost been a year since this journey began for me. this second battle with cancer. its almost as if me and my cancers quarrel for a while, negotiate some terms, decided who gets what points and who gets to continue. this is my living. exciting for sure. by trying none the less. i can't say i'll ever be completely strong. but i can say with all of the people who have surrounded me; with all of the strength and belief that has continued me- i can't give up. it simply wouldn't be fair to everyone who stands beside me. to all those who have raised their hands to continue me it would be wrong of me to simply give up. to think last december was my last december was wrong. i was wrong. but this world has proven me such. these people and their strength has proven me wrong. i am so glad they have.
i have been painting constantly with the new year. before and during both bouts of cancer in my living i have painted many a things. i have inquired many thoughts, colors, emotions, both subconsciously and consciously. i have discovered new places in my being just by utilizing the canvas and paint. the paper and pen. creation has continued me i am sure. creation has proven my reality. i analyze all the work i have created before my second diagnosis with my high grade glioma tumor and it frightens me how much we are subconsciously aware of but consciously blind to. i created work a semester before the spring semester the tumor was discovered and removed the week i woke up and could not read my homework email this past spring of 2011. that fall before i created an image for my final piece for the class at my dorm room desk with my two colored markers. one was black and one was red. the image read "INFECTED" at the bottom and was attached to a brain image created at the top of the page. i was fascinated with street art at the time and had them posted around NY as a street art campaign. the project was about an infection of the mind. of an idea. but i didn't understand at the time whose mind i was actually referencing. the mind would be a reflection of my own cancerous infection. it gives me the chills to think i had printed out scans from google of brain scans. why did i do this? why did i feel the need to create in this way? i remember looking at the image at my desk and thinking what i should create next with these fascinating images i would soon have made for my own reasons. i remember putting them aside after using them for that one project for that one class. i remember referencing different diseases such as AIDS but this had nothing to do with AIDS at all. this had to do with my cancer. my brain. my future experience.
i do believe in listening to these moments of unconscious. i believe in paying close attention to how you feel. we must all take notice to this instances where ideas or thoughts or feelings enter us and move us in whatever way. pay attention to your self. i must stress the importance this has brought me. i have felt more like myself than i have in a year. i have felt most confident in my decision making and living in the past month or so. i feel alive again. but i have let myself experience living that way by paying close attention. its a hard feat for some to find happiness. it was extremely hard for me before and after brain cancer diagnosis but it was a trek to happiness that i am thankful for. it takes times to agree with this world on some things. sometimes the stars feel aligned. and sometimes they don't. but that is okay. and we need to learn to deal with what the world had dealt. sometimes there is no rhyme or reasons. there will be moments we have NO IDEA why and maybe never will but if we pay attention to our living, if we take note to our experience we may get closer to any idea of an answer or understanding.
i urge you to find the patience i needed to discover. for me it was brain cancer that forced me to move slower, to read slower, to eat slower. but i am picking up speed. i remember everything from my childhood to now. i remember everyone, i am better with names of new strangers and i was never good at birthday dates. so i feel like the nicole i left for a bit last year. i feel like the girl i thought i had lost to brain cancer. no cancer did not get me. i got cancer. i beat cancer. again. this is what i believe and this is how i live. i have high hopes. i have big dreams. and i know this world is destined to take me far. i faith in people and i continue this living with excitement. with dignity. with knowledge. we need to all pay attention to this living that i know is true. -nicki
85. march seventh two thousand and twelve. 3:02 am - 3:37 am
i write to you in a variety of phenomenon; a complexity of numbers and relationships of the mind
this post is number 85. 8 + 5 = 13. it is march 7th at 3:00 in the morning. i did not pre determine any of these relations before walking up from my bed and engaging with this computer. if this doesn't speak reason in this living i do not know what does. its as if this world continues me in such a specific manner of unconsciousness that i am furthered. i feel lifted and carried and continued. it is a magical feeling. i truly believe i have never before felt so alive than i do at this moment in this living. i wish for everyone this elation i experience with such true. this perception of a world that is so clear. the ideologies that continue me push me to new spaces. allow me to explore new thought frequently. recently you will always find me jotting down notes in my journals which have duplicated, scribbles all over napkins after dinner, even notes all over my bandied package box because that was the only paper i could find in the car. i need to pay attention to these thoughts. we all need to pay attention to our thought. everyday, second to second thoughts that bounce between us, within us, and around us. take notice. take notice to your self. this governs you. i now remember why i even picked up this laptop in the first place. because i remember. I REMEMBER. i remembered every function on that sewing machine that my Papou gifted me when i told him i wanted to learn to make clothing. i had the urge yesterday to create a dress with fabric i had purchased a while back. it is striped a dark brown and white. stretchy. it would become and continues as a dress i decided. i will paint upon it perhaps tomorrow when i get a bit more time that the twenty minutes i used up on constructing it this morning before going into the city for my chemotherapy treatment in new york city. i remembered every click, every thread through. no my major is not fashion, i taught myself how to do it with its how to guide it came with in high school to make my first fashion like NICKI RAY CUSTOMS. this way made more all the girls i ever knew who passed away from cancer at my age of 13 if not before. i made it for them. i created and continue to create for and because of them. this is what i live through. these spaces of these girls. its powerful to think i have a team of four plus women up in heaven or in powerful places guiding my living, protecting my livelihood, continuing me. i believe that. always have. i believe in the image of my grandfather i exhibited right before i was diagnosed as a sign that he was watching over me, knowing a second cancer was about to be found. that image is back in my possession after its return from the showing gallery and having this large printed image document in my prescience now calms me. knowing my grandpa is back with me watching over me. he in particular has entered my life in my dreams but more recently in an overwhelming feeling of the now. its almost even hard to believe it myself. when i speak of what i experienced i almost don't believe it. my grandfather spoke to me. and i will lay my hand to the group in truth when i say i experienced this. the day my church held a special prayer service for me i felt his presence. i felt god. i felt the parish. i felt it all. i felt everyone's presence. i felt my grandfather speak through me in the middle of the night as my parents consoled me upon my bed as we all huddled together in hope i would beat this. my grandfather wished me to continue. he reassured me to continue this life. he was the voice of true reason and understanding of whatever this living could mean. he truly spoke through me. as if i needed to say what he believed to my parents who sat on my bed. my father was moved as my mother wept. i broke down in disbelieve that i connected so closely to my grandfather i never had the pleasure of meeting. but it truly can say i have the pleasure of knowing him. i can feel him living through me. RAY is my middle name. RAY is the name of my late grandfather that i spoke with that very night. RAY past from cancer not being treated appropriately. RAY is my continuum. what i believe to be my reason for this living. him alongside the girls i have met while battling Osteosarcoma at thirteen they keep me. they continue me. the strength of women and the strength of RAY push me to live. my faith, my church filled with people there to pray for my health; they continue me. they all have. i sit here in my childhood home where i grew up and learned of this living and i am at peace. i feel so loved and feel so alive and there is nothing more i could ask for from this living. when an individual has seen such darkness i suppose the light shines only brighter. i suppose the sadness only makes the happiness stronger. we must open our lives to experience what tis living has to offer. i feel completely new. yet i remember it all. i now remember everything. things that had been hard the beginning of this second bout with cancer. my memory has shot back with power. my knowledge for this livelihood had resurfaced and flourished. i truly believe i can do anything. we all need to maintain this glorification of the self. because we all are capable. we all are powerful if we allow ourselves to be. free yourself and notice. this is an incredible living. -nicki
i meet 3:37 at the finish of this post. 3 + 3 + 7= 13.
84. march fourth two thousand and twelve. 3:46 am - 4:02-4:13 am
in the crevasse of my journal in the dark: she enters my mind, my being
andrea has furthered me in this livelihood and i hope she is aware of it. to my sister who completes these circles, my body begins. my sister completes me and has saved me in meant forms of this living, this experience. it is safe to say i have been continued by my sister. by her abilities. her existence. we work in conjunction through this living- this is what i believe. i believe in this team. the team of us. i don't have to complicate this living in any way. its a simple relationship of strength that determines us both.a simple relationship of a complexity of living that continues us both. love and connection always to you andrea. thank you for carrying me through this living at your side.-nicki
83. march second two thousand and twelve. 11:25 pm - 11:45 pm
we call it what we will
i have been through a series of realizations over the past week regarding the state of my living. i have analyzed and realized those who moved amongst me. those who enter my space, enter my understandings and propel me further in this livelihood. i drown out the current sound in space and let the silence direct me. directing my attention to these inner thoughts that have continued the day. there is a silence needed to truly let this thoughts reveal themselves for what they really are. i have experienced great passion today for this life. for those who surround and support me. i can not continue without their mention. it is the ability to engage in these spaces and engage with words of others that excites me. my ideas flow so radically every hour i find myself awake. the notes sit next to my bed as i realize more and more i have much more and more to do. my attention to a productivity has been made clear. apparent. constant. this has been my re-birth i assume in many ways. i recently wrote that i feel cancer has saved me from neglecting this life. because it has propelled me forward to a greater understanding of it. a greater appreciation for the now. it is ironic that something so threatening can bring such solace. i look to those i value in my life and i have rediscovered their importance all over again. the need for those that surround me has propelled me. they give me reason. that shape that reason into beautiful, wonderful, forms. i think of Derek. the man i call my other. he has continued me through this living. along with my strong family bound to my existence i feel continued by the. along with the word of faith and believe in a living for my soul, i am continued by the grace of others. i sat within a restaurant tonight and the colors of food that lay in front of me became a world of a beautiful understanding. we have the power to consume this beauty, this health. we have the power to take notice to these vibrances of experience. it lays there within this world and upon this world for us to take form. it is an awareness in which we can fully open our eyes as much as it is a sensitivity to these emotions that run us. i believe in these thoughts because i have felt. we all have and all will. bring your attention to theses experiences of feeling because they are extremely telling. it all lays there for you but powers amongst us all. i believe we must take not. these connections are far too powerful to go unnoticed or let be ignored. this is power we play with in this living. please take notice. i find it quite telling if we take the time to listen to a truth laid upon us constantly. continuously as i have mentioned before. continue your self. continue your purposes. whether they are made fully conscious or not. perhaps you take it for a test. perhaps you enjoy it simply for the day. whatever your menthol holds, there will always be a path leading toward a greater truth. i embrace this world. i am grateful. i have lived and continue to take notice. -nicki
82. february twenty eighth
two thousand and twelve. 8:06 pm -10:04 pm
in my notations
i write in realization that i
have recently met this keyboard. i hadn't realized hoe close in time it has
been. amazing really how the moments of living have continued me. how so much
has entered my living that is positive and forth coming. ideas and projects
that have propelled me to new spaces. new ideas that continue me. it is both
refreshing and rejuvenating. i knew if i was going to take a break from school
i was not going to take a break from living. with this acquisition i made it
known that i was going to be continued. that this living would reap benefit and
production. so here i am not far from last time, ready to fill you in on today.
on this very morning when i woke and inscribed in the journal book that sits
next to my head. only this morning it was amongst light that i wrote. often i
find solace in the darkness. a calmness that continues me and my thoughts. my
words become open in the dark. but for whatever reason today i wrote so the
words were seen. the pen hit the paper and it was entirely seen. my thought was
made entirely visual; real and apparent. here are where my words begin:
i have experienced such moments of elation in
this living i feel so humbly lifted by the day. i am continued and i could not
ask for anything more. i am taken by the experience of beauty that rules this
living. the world has opened its doors is what i believe. my doses are lesser.
my fragments are lesser. there is mere sense set in place. i have not forgotten
anything. my memory returned with a vengeance. my sight has returned with
power. power great power runs through these veins. there is an awareness
through this living that continues in me. what i believe continues us all. we
have the very special ability to become aware of who and how we are; who and
how we work upon this earth. amongst this age- this living. we have that power
to open our attention to living. it becomes a combination of an overall
awareness of self in space but that appreciation for the now. the what is. the what exists in the moment.
the second that continues us, the light that meets the very words that i
inscribe now. these places of darkness meet these places of light harmoniously.
they work together to exist. they need each other to function, to continue.
with one there is the other. with one there is the other. we cannot forsake our
experiences of darkness for a difference in our perceptions of light. they work
hand in hand. light is to dark as dark is to light. this must be remembered.
this relationship must be taken not of. we have become aware. i have become
aware thorough these spaces. through my travels in this living day to day. i
had experience now living from the very start of it all. i have followed new paths
and explored new lands without ever fully knowing i had the ability to do so. i
don't believe it is easy to see these new paths until they have been ventured
through. until we have ridden(written) through both the darkness and the light.
through the silence that will calm us and figure us if we allow it. it has
become incredibly important and necessary to experience living in this day. by
writing, by recalling, by noting, by creating, and becoming aware of these
spaces of darkness and light. it is a travel. for me a necessary travel that
began at the start of this second trying journey. i am okay with it. i am keen
to this living, the experience of it has elated me, has opened me entirely in
new ways on new levels with new appreciation and interpretation of what and how
it means to enjoy this life. to live this life. my works have continued through
this special journal quickly giving me little if no time to record them. where
abbots regarding time and exact moments. but this is where they become even more
real. this all of the moment. of the pushing force that urges me to record the
thought that enters me, that comes from me. i do not have assigned locations
from where they are. i do not call them home. they fly in space- through space
among my mind- these thoughts travel and will continue to new places- new
spaces. i just hope i have the ability to catch glimpses of the interesting. to
record this experience in the best way i can to how i feel it. to how i
understand it. i spread these ideas from how they enter me onto the paper i
en-scribe and i wish them well. i know they will be furthered in some way by
some one. i write these words that flow through me so they are taken. so they
have the ability to be taken by whoever wishes from them. for whoever needs
them. my words are spoken to be understood. perhaps but more so experienced.
understanding is made individual i believe. but there are moments of my living
i have found universal. moments i may experience that reach out to every mind
to every hand and every heart. i believe this. this continues me and this moves
me to write, to live, to continues upon this earth. i have these energies sent
my way and i must not ignore them. the power of text and story has always
infatuated me. it has always excited me. continuing wisdom in a manner that
references time, experience, discovery etc. this to one is what living is. this
to me at a young age is how i defined life. i never questioned the amazing
thing called life. i knew it was way bigger than any of us, outreaching to
endless world and opportunities of existence. so these thoughts continues me,
these words further me and i feel more education in this living than i ever
have before. i know i will only grow more. i will grow in reason. i will grow
in understanding. and this deals with the abiltiy and desire to lay open to
this world. lay open in this living to what it means and how we see it.
everything is subject to change, to alter, to test. i have been made aware of
that. but that is okay. this is the function of life. it is about the changes.
it is the change that defines this experience; this living. we are nothing and
no one without them. we need to be tested to fully appreciate what is- this
living- our experience of it- our perception of it and time entirely. if we can
accept this experience we can live entirely. what i would like to say, entirely
in peace or at peace with ourselves- with others- with the entirety of this
world - this life. for our emotions, from our perceptions create this life's
outcomes. our interpretations continue us or end us if we allow. it is up to
us, us all i believe. to join in a positive force and see this living for its
incredible factors. to reach these moments of elation that i find myself
inscribing this very second. i continue. i have been continued. and i praise
the world for giving me that. i praise the lord. the god. the whoever for that.
however and whoever has continued me. i believe in it entirely as i should. i
point to this world that has saved me- time and time again and i think of my
personal connections with all. i must remain strong in my confidence that this
very living will follow me far. that i will live a long life of experience that
continues me to wonderful places upon this earth. i am elated in this early morning
yet again my words have furthered me. to new experiences of this living to new
understandings of this living. i am thankful to be alive to have this pen, to
have this book. it is an inquiry we choose to confide in. an inquiry i hope to
continue my entire life to continue me, to continue this living.-nicki
81. february twenty eighth two thousand and twelve. 1:10 am -1:33 am
i wake to feel a vigor in my veins. a true call for living that becomes me. there is this surrounding energy about this experience that has greeted me through this living. the world is new. i have accepted it as such. there is great power in realization i have found. there is an even greater power in change. this change comes from an awareness of production with my physical, emotional and spiritual body. the world is new. a rejuvenation would be an understatement to the person i now feel flowing through me. there is humor. there is happiness. there is energy. pure and real energy that flows through me. it has been a long year since i have had the pleasure of experiencing these activities. i speak words and they are brighter than they have been in quite some time. i work amongst and alongside other individuals and i have encountered these powers. its a rediscovery of what it means to live. to be alive. i endured trials and tribulations for a long time coming but i feel i have reached a new destination. a destination of living. of thriving through the space we have been blessed with. this space elongates me; saves me. these people wake me and activate me as they once did. i no longer feel entirely controlled by external forces i feel foreign to. it is as if the body has become my own once again. or close enough to the idea of my "own" as i have been over the past year of living. its as if i have grown closer to my self, sense of true being. by true i aim towards the idea of the real. the genuinely of my place of existence here on this planet. yes it was most necessary delving through those dark spaces. yes it was needed to hit the points of low incoherence to gravitate toward an elevation. when it feels as the stars align i must not question only continue. when my muscles align and my body tunes with its existence my cells feel positioned perfectly. i can not question this perfection of momentum. i can not question the positivity that engulfs my current living. my attention to the now and my appreciation for living breath. i cannot question this reality. it is simply too good to wonder its stepping. its only an acceptance that lies in order. an appreciation; am honoring. not only do i feel honored by the gift of life i feel propelled by the gift of energy i so missed for so long. my body thrives and it is good to here those words made wholesome from my language of living. i think of everyone who gravitates around me. who moves me in new and magnificent ways. those who have continued me at times i was unsure to do so on my own. i feel even more elated by their existence. by their continuity. humbled yet again in my living. i wish nothing but the best for everyone who believes in it. for anyone who gives power to the fight of this living. for anyone who commits to a truth we set for ourselves. a truth that is never truly and entirely defined but in existence for us to reach toward. i am continued. we all are if we are open to it. we have great power through the veins that run these eternal systems. these individual systems that spread through us all. we are all connected. eternally. let that be known. let even system be appreciated for, accounted for. notice yourself. notice each other. we have the power to continue ourselves we have the power to continue each other. i truly believe this. do not forsake the powers we exchange. take notice. and take care. time runs far and fast an appreciation is in order. i call for it. by and from us all. each and every individual that creates the power of this living. all the best to your experience and your continuum. i bear you good night, rest this rejuvenation. notice this living for all it is worth. best always. -nicki
80. february twenty third two thousand and twelve. 7:05 am - 7:13 am
last night's service: a thanks to Savas Zembillas (Metropolitan Savas of Pittsburgh)
I have felt entirely lifted by those around me. Eternally propelled and elevated by their purpose. Their prescience. I feel propelled; an understanding of reason of space and elevation. Purpose. The presence of his tear. They dive and live within. Don’t’ ever feel anything less than emancipated by these living movements of powerful others. I thank you yet again for your spiritual power and drive for this living Bishop Savas Zembillas (Metropolitan Savas of Pittsburgh) With great love and admiration, Nicki.
79.february twenty second two thousand and twelve. 8:40 am - 8:58 am
so yesterday was the first day of my new chemotherapy treatment labeled "Avastin" in the expansively wonderful field of medicine. over my youth i have taken dozens if not more medical treatments created in a technical lab somewhere to maintain the human body upon this earth. i have been incredibly lucky to have survived the strong cells i have and continued living this life. drugs have saved me. surgeries and medical advances have furthered my life; furthered this creation. the divine creation of humanity impresses me continuously. to read up on the new medication i am now starting visit, the Web MD site here. here describes a brief analysis of the current medicine i now work with. yesterday i entered the NYU Cancer Center with great hope in this new drug that has been quite successful for its past counterparts. success is always a lovely word to attach to any medical treatment, body etc. i find it incredibly important to say up to date on advances such as the one i experience. this effects a nation, a world, it ins ability to overcome strong and powerful illnesses such as brain cancer. it is incredibly necessary to say current; it keeps is actively involved and resourceful. there has been moments where in the beginning of finding information about myself out that frankly i just want nothing to do with. this is naive of me to attest to this activity. yes it is difficult accepting myself as a patient, and as a recipient of medical treatment for a large portion of my young life. the reality is this is my living and i need to come to terms with that. i need to be okay with it. i need to respect myself enough to pay close attention to the matter in which i am treated and the decisions that define my now and my future. we as individuals must be smart. the attention to our lives is everything. if we can not give ourselves that undivided entirety, no one else will. we must respect out bodies. we must respect our space. knowledgeability furthers us. activity furthers us. allow yourself to know and be furthered. -nicki
A special thanks to a wonderful woman names Gunilla who I finally met and worked with yesterday. Gunilla is a fantastic massage therapist at the NYU Hassenfeld Children's Cancer Treatment Center. Immediacy we connected with this positive energy I will always remember. I hope to continue working with her and gaining the benefits of her practice. I thank the NYU team for supporting such activity and promoting these varieties of healing practices. Introducing me to Rahki and other forms of this massage treatment I have felt lifted in new physical ways. I highly recommend an inquiry in this form of treatment and awareness of the body. Please take note. -nicki
78. february twenty-first two thousand and twelve. 7:30 am - 7:41 am
written on my telephone as the morning opens
I wake up incredibly early and I rely on my devices to write. My ideas to lead through the moment of existence I wonder who these words reach to first. I wonder where these thoughts travel. These new spaces continue me with this time. These days do not frighten me as they did at the beginning of this new year. I feel I move right alongside them. Perhaps ahead of them. Maybe in conjunction. Space has always influenced me to see the world in new ways. How my body interacts with this world fascinates me continually. I find new ideas in the wake of the morning as my eyes lay wide open to the light that falls upon me. I jot down all these ideas I hope never to loose for good. These ideas are everything to me and loosing sight of an idea has been a past reality for me. Experiences of not remembering have been part of my existence. It has altered form these unconscious and conscious spaces the past year now. I have exported more than I ever thought possible in this specific track of living. I don't expect to be set on a knowledge of this living because it is such a collaborative testing of experience. This living layers and layers to extraordinary divisions and connections. The brain has continued me and it's complicity perhaps is never meant to be fully understood by the simplicity of man. These thoughts enter me and I am fueled to make progress of this living. Propelling an activity of my living now that it lays on front of me. I continue. This one continues. I live entirely. -nicki
77. february ninetieth two thousand and twelve. 1:36 pm - 2:07 pm
today is sunday
i arrive home from church service today and i feel emancipated in many ways. i have decided to take a lessor amount of the medication that i feel was causing my bones to feel weak. that already has boosted my body it feels and i already feel stronger. medication has great effects and i can not denote that or overlook their power. we must be aware of what it is we do with and to our bodies. internally, externally, mentally, spiritually. these facets of our living are all interconnected and we must acknowledge this. our bodies live upon this earth for reason and we must take note to our interpretations of this living and experience. keeping my eyes open and most important the heart to this living experience.
today in church i i kept feeling propelling to write down my thoughts. in hopes of not appearing too rude i asked my mother for todays paper and jotted down all the ideas that entered my mental space as the service continued. i assumed some sitting behind me wondered what it was of importance i needed to so quickly jot down in the pew at church.
i felt completely moved today by the service and i guess now i am trying to discover trying why. i also feel moved in different ways in different places if i am whole heartedly acknowledging it. there was a break of fresh air today for me for whatever spiritual or ephemeral reason. i felt a truth with me as i stood there. i felt a reality of this living live strong upon me. the religious space i found myself in had a lot to do with it but even more so by the bodies that fill the church around me. all those who have graced these spaces and now have left this air to now be taken in by my body.
upon today's service booklet i now review as i type these ideas that either entered me directly or subconsciously through a moment of specificity. i quoted these from today amongst me-"I am continually humbled by the power of people"
"I feel elevated in this sacrament, this living that moves me emotionally; this spiritual eternity."
"I believe amongst this consciousness. This living of the unconscious moves within me and the faith I hold for this spiritual living continues me; continues us all."
"I write among the space, I feel compelled to notate this experience. This most peaceful movement of living."
"Darkness is the absense of light" and "Rejoice in salvation" then rang in my mind to record here on this very paper.
These moments of living or an elevated understand for the ways of this world have moved me in many ways. Words have always been important in my understanding of this living. i ask for an attention to the words that pass through us, within us, around us; they create great power in this living and i believe it necessary to pay close attention. open your mind to these moments of living and one will sure feel elevated as i have had the privilege of experiencing this fine morning. -nicki
76. february eighteenth two thousand and twelve. 6:50 am - 7:11 am
brittle bones: breakdown and build-up?
i awake to the feeling of brittle bones that extend throughout my lower body from the surface of my hands. i feel positive in the mind set but i feel quick weak in the physical body recently. it allows me to analyze this figure and its strenuous activity over time i have have to endure between the very treatments i have had to encounter beginning at ager thirteen til now. i feel as those my age marks me as too young to experience weakness in my bones or pain in these places. often i think of my greek grandfather and i visualize his hands, his eighty year old hands that have passed through so many spaces, touches upon so many things and i see the stories upon them, i see the fragments created by time and experience. there is great beauty in this journey, i am aware of that. what it is i hope to find is a beauty in the pain i feel shooting down my legs as i ready to sleep the past week or so. i am trying to make sense of an uncomforted within my small hands that addresses me at such a young age. it shakes me a bit to think all of the processes, treatments, medications, alterations, my body has been put through weakens me in any way physically or mentally. of course i am reluctant to call myself weak, i don't think i will ever have the chance to entirely admit to that. strength has been an idea and activity i believe to have continued me. and yes at times strength has wavered and i have needed the support and activity of others to continue me, i recognize that, but this very morning i wonder if gaining bad a vigor for this living is capable within my weakened figure. the body has become everything to me as i see it now. it is my existence here on this earth. it allows me to function. it allows me to move. it allows for this mind. without the partnership my mind has no where to activate. its a complicated relationship i have discovered for sure. sometimes i wonder if the mind and the body work together at all or are they distant friends that get into trials and tribulations often. i had hoped for a joint activity, especially over the past year of my living. i want my brain and body to be friends. i want my brain and body to co-exist in a physical and productive harmony but how much control will i or anyone have over this? i can deal with aliments, pain, whatever really. i always have. i am okay with that. i am not placed upon this earth for complaint but rather an acceptance to the best ability i can. this is what i believe. we have to deal with it, that is living. we can't condone it as unfair, jail it, or become angered by it we must just continue. in hopes that my bones continue me i am wishing for a physical reformation in this living. whatever that means. i must gain strength i know that. i am just praying this is at all capable.-nicki
75. february fourteenth two thousand and twelve. 7:48 pm - 8:00 pm
powerful people have entered my life.
VIEW NICKI MULLER'S NEW VIDEO PIECE ON
today has been a day of exchange and movement for me. movement of words, ideas and excitement for this living. my love for this living has become overwhelming through the motions of others. through the words that have come across me through those that surround me. it is an incredible emotion to recognize presence made around you. i have been taken in places i never through imaginable by the words of others. by the thoughts, prayers, ideas, whatever you wish to call it. words have always meant so much to me and not being able to read them as easier had put a damper on me recently but such responses, such inquiry has pushed me forwards aiming to beat any struggle that approaches me. this is my destiny for whatever given reason, to challenge these battles and overcome any negative ideologies of a perceptive living. i as any of us can rise above. live confidently in and with our quarrels as furthering our exploration of this world. i believe we are furthered by question. we are furthered by trial. this is what living entails. i have been made aware over and over again, as we all have. some trying moments more challenging than others. well if not modifications, no excitement. this life is made exciting by our perception of such. this world lies awake in my hands as i continue on. it should rock amongst us all with its power. let us be awake to what is. lets us make it known to what we strive to unveil. this is an energy i keep turning towards that continues me. an energy i say thank you to all those that surround me. surrounded by thoughts, i have been kept alive is what i believe. surrounded by words, by intent, by prayer, by inquiry. today recognized a day of love breaches so much father than that. love cannot be understood for a simple definition. the love for another human being, another prescience furthers our living. notice moments of magic. notice the moments of others. notice this extreme condition of living. that continues us all to a new day. -nicki
74. february twelve two thousand and twelve. 8:20 am - 8:34 am
waken to thought, feeling and more
i wake up to the thoughts of my older sister who spent time with me this past weekend. i think of her intense importance in my entire life. to stop and see here for what she is and the power and strength she has carried me through, lifts me. she has always been a force of strength for me. whether i needed it or not she stood tall unasked upon. i simply can't explain to importance having her be part of my life. i remember her talent and working with her hands at a young age. i wanted to be her. as any young child looks up to their older siblings. she directed me in ways that moved me happily through different discoveries of living wether she truly meant it or not. i find my sister in many of the works i create now. she lives in the work that i create involving text. she left me these pieces of her artistic ideologies at a young age to continue and grow within me. she left these emotions within me towards a fleet for living and creation. i've liked to think i see people to great extents. knowing my sister my entree life, i continue to discover new and new worlds from her. i guess it is not being to fully understand her at times that keeps me completely interested. she maintains this sense of power that i have always found compelling; driving. we do not all have to hold a strong character continuous and i have hoped she has learned from our relationship it is okay to find time to fall weak. but that is one thing i will never see her as. no matter what. this vigor has keep us joined since our meeting. relationships tie us, open us, may condemn or free us, however we continue to choose. like i have mentioned their is an inquiry to this living, there are layers upon layers that continue around us, within our spirits to those all surrounding. some we choose to continue, most importantly those of our blood and veins. we must pay attention to those around us. especially those closely seated in our living. our eyes must be open the living who find our deepest of love. appreciate your sisters, your brothers, your mothers, you fathers, your aunts , your uncles, your grandparents, everyone who enters your living. time is incredibly too quick to lack attention to their place within yours. i thank my sister for continuing me. for saving me in many ways. to love and respect is an understatement through this living. -nicki
73. february eleventh two thousand and twelve. 8:01 am - 8:27 am
i find myself writing within my current book every single night. in the middle of the day, in the dark night, in the early morning. i continuance. it is this idea of continuum that furthers me through this living. that propels me towards a forthcoming appreciation for living. time and fate has moved me in all directions i must appreciate as grateful for. i do believe in miracles but i even more so believe in the power of each other effecting one another. i have found myself an example of these forms of living; this living day by day driven by this miraculous continuum. this morning i wrote on my paper "i have to believe in my body/believe in a truth/ a truth towards continuum/ that lifts me/ continues me". theses ideas have been entering within me and my space. my mind has traveled to grandiose spaces is what i believe. i am set on living this life with the utmost attention to experience. i must realize the beauty of this living over and other again, i must not be at all bewildered by challenge. i must be propelled forward by these challenges, invigorated by they questions of ability and reality. my realities have seemed to change as my living has continued. but who's hasn't? i have been paying close attention to this life i'll never fully know, never entirely understand, but it does bring me closer. my inquiry brings me closer in hopes to a greater truth we all may never reach. and that is okay. it is the inquiry that awakens me, and continues me, allows others to connect to words i place down for others to share. i am thankful for the communication i still have control over. i don't believe i will accept a chance to stop if given. i have accepted many ways of this world that some may call 'unfair' but to me it is my own and i must take it for its presence and make it okay to continue. i believe it is incredibly important to have conversations with the brain. our brains. our thinking we can never even fully know. if we cannot fill the answers closet to our idea of this space, no one ever will. we been amongst our minds. we continue alongside them, around them, because of them; perhaps we empower or destroy pieces and parts of our experience, our thoughts. maybe this is entirely controlled beyond our knowledge endlessly. we can only hope for the ability to ask question."what it means to experience, this is living" another sentence i quickly jot down amongst the notations in the book right near my head. :to learn ideas, to new places" we as human minds travel new ideas and places constantly. it is our appreciation or realization of these travels that partially free us from a constricted world of living. we are often often to this world in ways gone unnoticed. an earlier writing a night or two ago states, "know who you are, and continue it". i return to that statement and wonder who it is i am upon this world, returning to that question of the self. we can only know what we allow ourselves to know. we can only understand what we hope to uncover. it is up to us to lift ourselves and appreciate the lives we have been given, the spaces we travel, the ideas that turn. this is my continua i will continue to mention. i am okay with it if it was sent for me. i face the days as they come because they are my own and this acknowledgement keeps me alive. again i thank the minds whom listen. learn and continue along my side. along my words and further my inquiry. let me words melt and wonder, let this living continue"... whole-heartedly together"/ "worlds move. time spaced." -nicki
72. february ninth two thousand and twelve. 4:37 - 4:55- 5:06 pm
so much to give, even more to be received
i am truly humbled by the prescience of everyone in my life. anyone and everyone who has taken notice to my love for living. my passion for this life. my attention to my faith. this week has frightened me in my way that are found hard to explain. the body is a complex organism i continue to learn more about every day. the mind is a complex phenomenon that has continually humbled my existence. the attention people have paid my way other this past trying week has moved me in such incredible ways. it has helped healed me, i truly believe. it is my love for people, my religion, my beliefs that is what i believe has brought me new life. the struggle of living continues but it should not be recognized as such. living is the most beautiful of experiences no matter how trying it may seem. we are given chances to accept our living. easy is not something any should expect, but what i have learned to expect is kindness. i have learned what it means to believe in one another, to support each other. i saw very much of this this past week in those who have surrounded me. who prayed for me. and who have surrounded me in their faith, in their prayers. again i am truly humbled. bishops to priests to my family to complete strangers, i thank you all for showing yourself to my spirit in ways i'll never entirely understand. in ways i openly accept to take as your help. last night my congregation assumed a prayer service for me this past wednesday. i was staying in the city awaiting tests to me taken on my body. unknown to me was that by the end of the night the church was packed. people filled the pews. all to call to the help of God praying over i and all those that stand for me. i am moved. entirely. i am raised by you all and no words can even define the love and humility i feel over and over again. the countless words that have been repeated to me ground me further. they save me more and i feel the presence of you all who care. of all who paid attention, to me, to anyone. i see you all. i always have. i believe in the actions of those around me. i've acknowledged them whole heartedly. it is faith i believe that has carried me through. i believe it is a joined belief in each other that raises us all, saves us all. there is no proper words to explain the feelings i have met over these past few days. i truly believe i have been saved by you all and i never truly believe this could be entirely possibly. but today i truly do. i feel saved by your words, by your emotion, by your attention to my existence. strangers and family i take you as noticed. i always believe i have. i have felt it so honestly and humbly returned. i continue this living for us all. i truly do. and will always continue in such a thankful manner. i hope too that one day i give you all you have given me. over and over again. there must be reason for it all. and you all have proved it all to me, at the side of my heart, the core of my soul. you all have saved me this week, and that i believe. -nicki
i will continue treatment on my brain this coming monday that is aimed to lessen the swelling said to be caused by the radiation therapy i have previously received in the past. after meeting with a tumor board council at NYU and members at Colombia Presbyterian, radiation doctors, neurological boards, surgeons etc. decision has been meet to treat the situation as such. Of course everything is subject to change over time depending on reaction to the new chemotherapy-like drug that will demising swelling as well as any cancer cells. again i thank the attention of the medical fields to join together and fight for my life together. working together as a group for the sake of my life has continuously saved me time and time again. i truly believe it takes a variety of incredible minds to save another. the ability is not easy and i have been made aware of this. i could never do this living alone and it has been the continued attention of my doctors, surgeons and health teams. it takes a team to save one. i have experienced this time and time again and i thank you yet time and time again. again i am truly humbled to be all the treatment i have received. an attention to another being's life has called for the savior of my own. not enough words explain the importance, the meaning of what it is you all can and continue to do. -nicki muller, forever thankful for your continued inquiry and attention.
71. february sixth two thousand and twelve. 2:18 am - 2:37
this living has been rarely made easy for me. but i've dealt with it. i came to terms with it at a very young age and grew from there. i was not expecting it again. to face these harsh realities at yet another young age. seven years later i battle cancer again. only this time its a new location, a new cancer. i am left changed, physically and mentally. i keep convincing myself that i can make it through these changes, that i can make it through this new way of living. but it is not made easy. any step along my way i find a fight. i have been okay with that living. i have accepted it. but i feel tired. i feel tired of this fight. it saddens me to be affected in such a way of negativity that accompanies me with these medication i must take. it saddens me when i need another to read my email for me and it takes a few hours to write that paper that used to take only one. i don't want to call upon this breakdown but it certainly feels as this way. i don't want to accept it because then it makes it the reality. i felt broken for one of the first times this year yesterday at church. i let everyone pass me in line because i did not feel strong enough on line as the others pushed. i was saddened by this movement. i always find humility in this particular location but today i felt something was wrong. once i reached the communion held by the priest i finally felt at peace. a moment that was solely for me to take in the body and blood of Christ. when i left my stance a sadness hit me again as i reached all the others who made contact with my confused eyes. why have i been given such challenges at such a young age? why have so many other young people been challenged with these powerful diseases? no it is not fair and not enough words will simplify my anger or sadness. its hard to make sense of the emotions that fly through me. trying to make sense of this living has been a trip i have taken thus far and i pray it leads me further. but i must come to terms with the cards i have been dealt. it is for whatever reason i have been chosen these paths. i must be okay with that. as difficult as it approaches me. i will continue writing as much as i can. whether it is understood by others or not, it needs to continue for my need to exist on this earth. whether my words survive or my need to create imagery. my need to be remembered for an awareness of living. an appreciation for life. if nothing more places take that from my writings. if anything take that from my life. appreciate the power of living; the power of words. that may enter us, that may leave us. please don't forget them. please don't forget me. -nicki
70. february fourth two thousand and twelve. 10:15 am - 10:36
i am continuing this fight. i am saddened to say my most recent scan depicts the tumor as re-growing. the treatments did not work specifically as we intended. the radiation did not work for the long run as we had hoped. it's hard to think anything right now to tell you the truth. i have been fighting this fight several times from my young adult life to now. i have been fighting against illness for a great chuck of my life. i do not ignore my living of health and the experiences of life that have allowed me to live a wonderful life. i have always looked to my life at a young age and saw it with complexity. but i always found myself okay with these mysterious of living. i trail on and i am trying to continue with power. but it feels like i have been hit by a very heavy rock and i must stand back up. i have gotten hit so many times down to these bottoms by forces uncontrollable by anyone. i have been fighting these forces for a time now in my young life. i want to win. but its hard to know the fate of my function upon this earth. i could have given up seven years ago. i could have gave up a few months ago. and i do have the opportunity to give up again. but i have made a promise that i will not let anything or anyone go down without a fight. i have always been interested in watching wrestling and other martial arts wresting. this is how my relationship with this living has felt. it is a power match between two. one versus another. only this fight i continue with is the fight between my body and brain. they duke it out, let me tell you that. i don't know whether to make friends with my opponent or hate them. trying to accept this living has been this quarrel of consistency i work through. for either man, in this battle, every fight is difficult. i want to win every time. these powers certainly challenge me to grueling extents. my fingers are just crossed that i win these fights. however many scars it takes to get there. those who care about me, who support me, i owe it to them to continue the fight. my head must not be held downward. i will try my best to continue with strength of body and spirit. -nicki
69. february third two thousand and twelve. 10:59 am - 11:57 am
what scarred me most about this new year was that i didn't fore see it. i didn't have a plan. i did not foresee the future because i was so concerned with the now. at the time i was caught up with the idea to complete the year. my time frame in which i had constructed from the beginning of summer was coming to an end. i didn't foresee far enough into the new year to decide how to approach my living, my experience of place and time. i guess time caught me off guard. time sped through and i had to catch up. the only initial way of approach this, of battling this race of time was by making. it was by creation that kept me in line with the present. it was the moments of creation that aligned myself with the world i live in. these are the moments where i feel in control of a system of complete uncontrollable emotion. it is complication at its best. but that is what it means to think. to act upon these thoughts toward at mode of creation. i explore these experiences from time to time. from one idea to the next i challenge these spaces. i challenge these ideas. but mostly i challenge myself to continue. to act upon these emotions, or energies that push me. most importantly these emotions are acknowledged. and this is why i live the way i do. there is a necessity, and urgency i have spoken of before. an urgency involving my mind and my body. my space and my execration of time. so now i don't have a plan but what i do see is a continuum of time that travels though me. sometimes in moments with greater strength, or moments or greater urgency, to communicate something that can never be put in words. words don't do it proper justice. it lies in another realm we can only hope to experience its true intent as the artist reached for to open up to others. the other who leaps to reach these new spaces as well. the other who leaps at these existences. the other that is fueled to continue its inquiry. this is where i have reached toward a wording for art. for artist endeavor. the reasons why fluctuate through our systems. through our experience of this time and living. there is always more to know. more to experience. more to try to understand. we only hope for these moments where we can touch these ideas to an ephemeral truth. a world of complication made simple. i continue the thought of that overlapping sphere i painted right before my brain tumor made itself known. it was of the moments of a conscious confusion and an unconscious clarity that i believe is what i truly experienced this past year. the totality of spheres included three. one grazing the circle circle at the top and the other at the bottom. but the three images together create an image that is continuous. that is forever. i am not exactly sure at this very moment where i stand within it. the marking made on its sides explore these abstracted versions of our living. they reference medical teats but free us from any clear man made definition. they further us in the space of ambiguity relating to diction and word construction. they leave us with imagery. those who study art learn about pictures and their creation. how they are made and why they are made. art history supports our relation to this world. why does anyone create work? to aim closer to this truth we can never find? we create because of a need to express emotion we find reaching us? reason are often various. the need is often constant within me. it fluctuates but it is always there. we all have different needs. different energies that live within us. we just all must pay attention. attention to our thought to further our experience of this earth to greater extents. to a furthered understanding. my writing continues because my thought continues. my thought continues because my presence continues. my presence continues because i let it be known through the tracing of my work and the writing of my words. i have passed through spaces that have required me. for reasons that some lay defined and some known far away from me. my morning has begun this day to continue my thoughts. to continue my being. we are all given the chance to explore. we are all given the innate ability to think. we must use these powers what we are granted with. i believe i was given the many chances to continue this living to explore ideas i initially would have never have known. these ideas i would have never met if time did not play its course otherwise. so this 'plan' had no concrete answers. this 'plan' had no set beginning or end. these plans are ideas we construct ourselves with. they are ideas that the mind plays with us. it is a constant existence that moves our understandings constantly, continuously. as time ticks one. i will meet you back here trying to make sense of these words we have created. i will try to make sense of these ideas that pass through me quick as i race to get them down. racing against this time that speeds me forward. will i ever truly know anything? will any of us truly know anything of each other placed upon this world? there is questions i ask, questions i believe we should all have. questions that continue us, to further places within ourselves and amongst others. this living is a search. some to other places, other ideas than the ones i search after. we all examine new places. we all aim to explain different ideas through this living. don't let anything stop you. don't cease the journey for anything or anyone. it is our decision to lead our life. it is our decision to explore these ideas. don't let the clock scare you. it is only numbers through time, that we will get to know the moments or lose them entirely. accepting it is what it is that frees us.-nicki
68. february third two thousand and twelve. 12:11 am - 12:51 am
(to the two of you)
this weak i have found myself down a bit through this living. today i was woken up. utterly shook back to what my purpose for this living, this making means. we all loose sight of our missions once in a while. there is an urgency for this living, and this s creation. after having a deeply routed conversation over dinner my friend and i found ourselves living among these fleeting moments. functioning within our spaces with specificities of energies. their varying locations. we talked of the moments of magic. these moments in time are the moments we live for. these rare energies is what continue our creation. that fuel us. when something lives somewhere within us. we are pushed forward. moved toward an affirmation that we are here upon this planet for a reason. we act in paths of activity to lead us closer to an ephemeral truth, that we can only reach closely, but never entirely know. if we fully knew, we'd have the answers. to have the answers would be to define this living. we can only travel through ideas of direction. we can only philosophize the possibilities of this living, and never define it. my questions continue to the future and my work completes in the past. it only entirely lives as i create it. what is left is its historical marking. an artifact of a present made past. a reference of the working mind made two or three dimensional. even four dimensional when we then move the pictures to re-visit over and over again. as a maker of things, there must be the reference to time. their must be a reference to space. but what must not be forgotten is the moments of complete magic. the leave as quickly as they come. these are the moments of magic Mathieu and i share. we sat across from one another at the dinner table and these ideologies were made known between the whole of us. our questioning of time and space, intent and reasoning continued in cyclical maps together. we then connected these passions to Vania. a woman with great inquiry to this living. i think of myself and these two other individuals and the personal powers the two of my good friend carry within the. the power of talent, reason, and necessity. this necessity to create. just because. i recall to the hundreds of thousands to millions of words we've spoken to one another. ideas we have voiced to one another. the very interest in what it means to find themselves encompassed in the idea of creation. there is great power in friendship. but their is even a greater power in acknowledging the power of creation. i look forward to see where we leads, where these paths continue us and always remind us of the power amongst us, forever connecting us all.-nicki
67. february first two thousand and twelve. 10:50 am - 11:02 am
it has been a challenge this living. this lively hood. i digress from my moments of positive contemplation to a present analysis of my body. an analysis of how i feel physically and mentally. the right side of my eye sight has been effected by all of the chemotherapy and radiation treatment. sometimes more than others my vision spazzes a bit and i cannot see as clearly as i once did. sometimes i need to look away to return to focus again. sometimes i wonder if the person across from me is aware of my differences in abilities. for me it hasn't mattered much, but its its fluctuation and changes that confuse me the most. learning to deal with this has been a part of my life this past year. sometimes i find it incredibly hard to say i know anything about my body, what it's capable of, what it will do. there are many moments where i just don't know. i move myself forward in attempt to continue this living without such medical questions lingering over me constantly. i advocate this day to day living but it is easier said than done. i want to experience the world in this way. but when ideas of tomorrow creep up behind me i guess everything. this is not healthy for me. it weighs upon me. i am trying my best to pull through these moments of question. these spaces of the unknown. i am constantly trying to remind myself to accept this living. i am trying to not pull negativity from question. i am at a constant battle it feels at times and i just want to be at peace with my being. my living.-nicki
66. january thirty first two thousand and twelve. 8:54 pm
negative and positive
there will always be moments where i find myself in question. as we all naturally should functioning, living upon this earth. but what is unhealthy is questioning your self. this weekend i was caught off guard by another. this is bound to happen in this life, as we coexist with each other. everyone has their experience of this life time and their thoughts of how they perceive one another. the perception of another reflecting on my lively hood had never been thrown at me with such energy. it through me off the track i once found myself on. people are not always going to understand your ways of functioning. and that is okay. it is okay to accept a difference among others. what i do not accept is depletion of another to avoid a personal internal issue. i was hit hard with words i am knowledgeable about. comments on how i function or how i work differently through these new ways of my mind and body that i have become aware of. yes, i'll admit my memory is not as sharp as it used to be. i will admit my eye site has been altered by the surgeries i have had and i really need to face a person when i talk to them. if you expect me to see the sheet you passed me on my right side while i glance to the left, i will not notice it. those are my changes. but no i will not call them faults. this is yet another phase of living. another time of learning. an acceptance i have dealt with. remembering this changes in my way of living was never spoken to me in the context in which they were this past weekend. i am very much aware of my life style. i am very much award of the changes that have been made on my body. but for anyone to feel any pain or sorrow out of this, that upsets me the most. i would never want to be categorized as weak, my body may have moments of physical weakness which i am working on, but currently i do not find myself anywhere but a place of strength for my psychological strength. it may take me longer to read text. we'll you'll have to wait an extra few minutes. one thing i have learned from it all, is an attention to taking my time. to cease this fast paced momentum, down. to really be with the moment. to really live these moments. i start my commentary verbally in class with power. if i ever let the idea that i am incapable my words tangle, like any human's words would. i am just as able as the rest of them. i had to remind myself of this. as any person may have done. we all have faults they say. well i don't really think i believe in the idea of faults, now that i put it all into words. these 'faults' teach us more than they do take away from us. this is why i don't believe in their definition. "fault/fôlt/ Noun: An unattractive or unsatisfactory feature, esp. in a piece of work or in a person's character" who has the right to define anything we do, anything we are, as unsatisfactory? "un·sat·is·fac·to·ry/ˌənˌsatəs fakt(ə)rē/ Adjective: Unacceptable because poor or not good enough". this sounds completely ludicrous. yes these are google definitions but they are still there, out for us all to define ourselves as. and well, i won't have it. according to me, that word does not exist. especially pertaining to me, or any human being. if we have control over nothing in this world, the one thing we do have control over is our self, for the most part, i'd like to believe. i have always believed in myself amongst it all. we are challenged, we are tested. that is living. we must come to terms with that sooner or later. i ask of you to always see the possibilities. for a positive production made of our living. our perception of ourselves and others. making sense of our self is the first and most important task we can accomplish. maybe not a concrete sense of self, but a capable self, that is open to the world and to others. open to a changing world, a space of multiplicities. open to an understanding of the "now". so of anything you may take from these ideas, i ask you to be open to others. be kind. and most of all be patient. i never considered myself a person of patience. (ironic i have been identified as a "patient" in the several medical spaces i have been within). my life has lead me in this direction. of course one may struggle with a new way of understanding, as i i have found myself, but if everything was easy it wouldn't be as exciting. stay positive to this life style and i promise your living will be made a lot easier.-nicki
65. january twenty fifth two thousand and twelve. 9:12 am
the day greets me with light. i can get used to this calamity. the calming feeling of now. things are okay. whatever okay may be. a continuum. -nicki
64. january twenty third two thousand and twelve. 10:07 pm
today has become about a rejuvenation. my self awareness developed even further as i sat within those classes. looking forward to a prosperous future through creation and activity. putting myself in the work space drives my mind awake. questions my intent upon creation and furthers my interest in the world i take part in. my living must take place somewhere upon this earth. there is purpose for paths leading down each road. again this brings me back to wonder my travels in the directions i find myself, living and working within. this new semester feels as a breath of fresh air. this moment of time has approached me with a weightlessness i don't quite remember the exact feeling of in my past experiences. the world feels as though it has been lifted to new heights. new exciting heights. it is like i am at peace with this new section of my living. with this new time spread forward in from of me. its almost difficult to explain my experience but i feel happy in this calamity after my classes today. my need to create work was even more supported by simply walking through the class doors. my conscious need to write everything said down. everything referenced, mentioned, introduced exploded within me. there are so many talented professors, talented artists, talented people that encompass the spaces i find myself in. so much can be found here. so much can be created here. these spaces keep me alive. keep me fully committed to this world that i live in. i have great passion to live. at times it may be easier to loose sight of such understanding of rich living when times are rough. but we are always capable of engaging in spaces that lift us up; lift us forward again, to continue our reason for this living. i never thought i'd be so involved with the medical world through my art work. this is just how my life worked out. this is the path i was given. the one i was set to follow. i come back to the idea of passion. how a passion begins within us and grows within us. without us truly knowing it at first or not. there is true reason for our existence, it just will never be made entirely clear. i have been given many chances at living, re-births you could say. facing deadly cells more than once has re-birthed me more than once. born as a baby, born as a fourteen year old finishing bone cancer treatment, born as a twenty one year old, continuing brain cancer treatment...and so on. the fight continues, but my prevail goes on. my words will cease to stop as long as i am on this earth to write them. my passion for this living holds strong no matter what the test may be. i think about cats. i never really liked cats. i think it's because they knew something i was unaware of. i think of their nine lives. maybe my experiences have something to do with that correlation. maybe not. just another idea that needs more research. i had a conversation today with a fellow classmate. told him about my year. he was amazed at some of the surgeries, test, etc. i've been through just in the past few months. to me my past just becomes yet another story. another moment of time in space. all this pain, all this intensity can disappear like that. just as time passes, like that. i have known many things. but the world feels new to me every day. that is one thing i have to say i have benefited from all these experiences. every day it is a new day. every day is a new body in space for me. there are plenty alterations that have been taken. but there are plenty more things i can learn about this world. why should i let a few malfunctions stop me? matter of fact why should i let anything stop me? like drugged thoughts, or displaced anger. i must return to that place of the moment. we travel. we all travel in many places. spaces. mental, physical, emotional. the day has the ability of being new. we have the ability of being new, if we are open to it. if we are willing for it. i am thankful for today. even more so for right now. my thoughts have traveled and brought up new ideas. new questions, as they always do. this is the beauty of living. this is the attention to now. -nicki
63. january twenty second two thousand and twelve. 2:59 pm
i am still alive. further than i thought initially last summer into last season. now that the year is new, the month is flying. already approaching the second month to the new year, i didn't have much planned, mentally, for facing this continued living. i almost cut off a continuation just trying to survive the rest of that battle last year. now that 2011 has been completed a new quest has been set up in front of me. new challenges, and now more similar challenges that i have become accustomed to. this weekend i took my first road trip to boston, massachusetts. i had to continue through time in completely new places with hope i was able. able to function, able to wake, able to move, able to be. these questions of my living, lay upon me constantly. things often change. things often alter in places quite uncomfortable that i have visited before. you know, i thought i had a pretty figured out experience of my living after surviving bone cancer at age 13. now facing new battles at age 20, 21 i question everything. this is why i have transformed my living to a day-to-day experience. this day-to-day approach allows me to focus on now. to not so much predict the future, to determine what is concrete. because now nothing feels completely understood or completely concrete with my body. that is the life that has been handed to me. that is the life i live through. again, tough, but i must deal. for me having to deal can only occupy the entire attention of the current moment. to take advantage of these moments has become more and more important to me as i continue this living. of course anyone would like to hear the facts, know the truth, make sense of a coming future. i can't place myself there. i have accepted that. or at least i am trying to fully accept it. again i mention, 'the now'. some may join me to take on the world, this living in such a matter of fact, matter of now way. some may not. thats what this world is about, making your interpretation of living. carrying out your needs of this extremely complex realm of existence. again i finish these sentences with more questions. i find myself even more bundled up with 'i don't know', how could anyone really? one day it all aligns, the next it simply does not. some days i awake feeling blessed and elevated from dark places of question and noise; centered to a true sense of being. then other days, not so much. other days confused as to why am i the one chosen? do i have the ability to raise above such powerful cells, with wicked effects? again my mind terms in these circles often. the medications also don't help me simplify my experience because of their intense effects that play with my emotion in ways i could not explain because i was not in the medical labs creating and selling these medical products. yoga practices have been humbling my body and mind lately. i have been practicing moments of silence where my body extends through space. i have been breathing deeper and trying to feel the world's harmony release upon me. it all deals incredibly close to a close medication and mind power. again, an facet of human kind that we will never fully understand. but to quiet this function will and had been bringing me to new clear spaces. so in any malfunction you may be experiencing, a malfunction of space and time, people and place, emotion and comprehension, stop these moments from clouding your space and time and draw attention to your deep breaths. pay attention to the calming of your body. to clearing of your mind. i must practice these activities and continue my work as if it were like my deep and concentrated breaths. a new semester begins for me tomorrow. new classes, new projects, new ideas, new work. it is just yet another few moments i face day to day. i must try my best at calming this body, if i can not fully understand it at all times. i hope we can all try our best to simplify the complications of living. to calm the equations of this bodily system that best benefits our selves. i pray for us all to try our best to simply understand what will never be entirely understood.-nicki
62. january nineteenth two thousand and twelve. 9:45 pm
signed release forms
at the doctors office i was asked to sign a release form so if there was ever a moment were i was unable to make a decision for myself the power would be placed in the hands of my parents. this signing of release forms hit me hard. this new year has hit me hard. i realized today because i didn't expect myself to continue on to 2012. as horrible as that sounds i was only working towards the completion of the year of 2011. being able to make it alive through that year. i didn't think as far as 2012. now that time has moved at such a quick pace i am now in the middle of january, in april it will be almost a year away from when the brain tumor was discovered. time has moved so quickly. it has been hard to come to a realization that this is actually my life. these are actually my words of experience. i never thought i'd be here. yet again fighting such life threatening diseases. today in my meeting with my oncologist who i have known since age thirteen, i was left with even more question marks. more 'we don't know'. we'll never truly know anything about this high grade glioma, brain tumor, that has lived in the head of my own. when speaking with my oncologist, ever since i was young, she always gives it to me straight. no lying, sugar-coating, nothing of the sort. she has always given me the truth. the reality of my diseases. she never treated me like a child, even when i was one. thats probably why i was forced to grow up. i had to face a very harsh reality that i was a bone cancer patient. i had to yet again face the same reality. i am a brain cancer patient. i'm sick of being a patient. i really am. but this is my life. and i must learn to accept it. life for us all is not always easy. oh well. tough. i don't know what tomorrow brings, i don't know what this month brings, i don't know what this season, to year this brings. i can only live by the day. day to day has become my most recent relative practiced. moment to moment. the medication i've been on to de-swell my brain from the chemotherapy that caused such pain has left me with having to take medication that angers me. medication that makes me someone else. a harsh and emotional person who thinks far too ahead. my nurse was age 23, who said she has three children and was married young. i thought about my age and my life and what i have done so far. this idea of procreating life is also a big risk with my sicknesses. this is another bruise to my understanding of this living. a lack of ability that is defined upon me. i have always told myself at a young age that these limits only make me stronger. any limitations could only make me greater. any scars only tell more of a story. only more of a reason. only more of a beautiful exterior. when on these meds i find my mind fighting with itself. fighting with these ideas that have entered my life. instead of immediately uplighting possible realities the depressing pills, saving me with one hand, yet breaking a confidence down on another. it is phenomenal in the darkest of places what pills can do. what it means to be saved from one pain to be then suffering from yet another. suffering from a harsh savior of one current malfunction. i guess what hit me hard today was not having this year planned. to make plans for myself is essential. to plan out my semester will be extremely important to continue this living. taking class, no matter how physically hard this may be, i must occupy my time with more than a personal reality. i need to extend my brain in new texts, new classmates, new rooms, new ideas of this world in which i inhabit. i need to continue this new year with great hope for survival. a day to day survival.-nicki
61. january eighteenth two thousand and twelve. 6:08 pm
right when i started feeling back to a somewhat normal self its time to continue the chemotherapy regimen. so we downed the dosage in hopes it would not effect my body so negatively like it did towards the end of my last cycle when i was experiencing great pain in the left side of my head. the pain would begin at my upper lip then to my nose then my left eye then continue upwards to my head and back around again. it felt as if i could feel the chemotherapy pill medication moving through a nerved path. this experience was a lot less excruciating in the beginning of the night than it was the last first few times it happened. this time the effects carried into the night slightly gaining power as the night went. when i would early morning i felt excruciating pain in my head, streaming from my forehead to neck. after taking muscle relaxer pills and other medication to calm my muscles i ended up sleeping through the entire day, waking at moments of continued discomfort. the dosage given is smaller than the dosage than given when i first felt effects so severe. it makes me wonder if my body has had enough of this regimen. my body has been rejecting this medication that i have been taking on and off since this all began with radiation therapy this past summer. is my body done with it? is my body tired of it? am i cured or is the cancer too strong to be completely battled with these medications. it's incredibly nerve wrecking and i don't feel brave right now. after passing a day laying in pain in bed i feel like i am not strong enough. but i know i can't think these thoughts. i can't let these ideas win, because then the sickness wins. i need to win. because there is so unknowns with my case i feel very much challenged by the world i exist in. i feel threatened by the body i move in. it is my absolute worst emotion of feeling powerless and i feel as though i have been in this position too many times before. everyone experiences a powerlessness. there will always be moments of this living that leave us confused, turned around in new directions we would have never though we'd travel. this is life. as much as i'd like to admit it or not, this is my life. and whatever course it talks, it what it was meant to take. i need to try my best to live day to day elevated. this elevation will allow me to rise above no matter what i face. or at least this is what i need to believe. this is what will keep me going, and keep me away from the morning tears, the night tears. it's hard. but like i've mentioned, nobody said it was easy. my fingers lace together and i pray there is something out there that can help elevate me; that can help continue me upon this earth, amongst these people i so love, amongst these places i so love. release me from these constrains.-nicki
60. january thirteeth two thousand and tweleve. 11:24 am
more "i don't know"
so now that the medication has worn off and out of my system i find myself typing this entry on my olf pc computer in my home.i decided to clean up my laptop and delte a lot of unnecessary files taking up far too much space. i do this as i clean my room and prime it for paint. this sickness has installed a need to refresh everything in my life. being the thirteenth day of the month that it is, and friday at that, i just assume life will be made a bit more interesting upon these hours. the number is so close to my living experience i believe in its connections. sometimes i try not to think about how closely tied this number actually is to my life experieience. i didn't even know it was the thirteenth until i started typing on this ancient computer with no spell check. simpler processes.slower processes. a different kind of living i cannot called myself associated with.this page has grown. it is quite large now and that scroll on the right hand sid keeps shrinking.i intend it to continue to shirnk as i continue this living. i intend that tumor shrink more and more with each breath i take. i do not know my real reasons for sitting down and typing this article. yet i don't truly understand why i am more prone to house cancerous cells.like i've said earlier this living can not be fully understood. there is an acceptence that must engage humanity. i am not saying this acceptence is easy by any means. because i'll tell you it is not. but noone said life would be easy, or that living would be cake, i mean did they? i never got that memo and good thing i didn't because the world that has surrounded me may have let me down. but i have accepted this life. because it is my own. i have declared independence over my state and have aimed for as much control as i could possibly have. i then think to the current political debates. i used to love watching these conversations on the television as a young girl. i was always intrigued by their theories upon governing a society of people. i always thought i could make up my own laws to live by, and i guess i have. i modled the world the way i wished at a very young age. teaching my imaginary classes imaginary laws and worlds of societies i created to function in a self run world.this has continued silently in my living. i've always held ideaologies of positive experience and thought provoking living that pulls us in new directions of understanding. perhaps this is my governement, my personal governement that has propelled me through these cancers. that has propelled me through this living, on and on again. these are new ideas i currently am exploring for myself. what does this world mean for me? what will i make of it? we are all partially in control of our placement in worlds we can make ours. then theres that thing called destiny. we can choose to believe in that or not as an overall guiding force of nature. so i've been thinking of my personal placement here, how i relate to all of you, how i relate to what has been, what will be. these thoughts again lead me to "i don't know" but really what do we truely know? ideas? sentences? feelings? moments? i question this world, i question future presidents. i question alot about this living. as we all should.-nicki
59. january tenth two thousand and twelve. 3:36 pm
the overwhelming feeling of "i don't know"
after my moment of elation a very real moment of harsh reality set in with the schedule of my next doctors visit. i found myself in such an elevated space, mentally, a few days ago. only to find myself led to this incredibly concerned location of the unknown. this is the space i now engage in. last night i found my mind racing ahead of me. my thoughts traveling quickly through the slipping grasp of time. everything looks good. great even. the shunt is working properly within my head and there seems to be no new problem areas. i seem to be functioning properly, my vision is the same as it has been since the surgery. okay. another month planned for the chemotherapy pills coming up in the next week or so. "what are the chances of the tumor coming back?" this is what i and everyone else would like to know. and guess what? no one will know. the test of time perhaps will be the one and only telling factor here. there is no definite way to uncover the potential for a tumor to re- emerge. my body is declared susceptible to cancerous cells, for whatever reason. this is how i function on this planet. for whatever reason unknown, my body works through these dangerous spaces. this is how i was created. this is how i continue to live. my life is fixed a very particular way to this world. there lies not reason, not concrete truths and understanding as to why. why me, why me over again. well why not?-nicki
58. january ninth two thousand and twelve. 12:52 am
to be told you are someone's inspiration is one of the most humbling experiences. it is those who have come through my worlds of words i now acknowledge as closet to an understanding of my living. i thank you for that. continue your energy, it lifts others, that i am sure.-nicki
57. january eighth two thousand and twelve. 11:29 pm
there is certainly magic in the moments of living. i have been paying closer attention to my experience here on this earth. i now always aim to cease the day. having trails and tribulations tangle through a once clear idea of life is called living. i was pushed forward to take each day to its fullest after battling bone cancer at thirteen. i guess recovering from that i ran my life in fast forward aiming to accomplish as much as i could, make the most of this living. to make the most of the time i was awarded. i drove toward reason. a reason for living. as the years grew longer from my initial diagnosis a distance seem to grow from that initial space of energy. my energy shifted, for whatever reason. these reasons i don't believe i will ever have the power to explain. this is living. an unexplainable experience we must motion through. i knew something was wrong right before i was diagnosed with my second round of cancer, now manifested in the brain. i knew something was coming but did not turn my attention to the dark possibility of it. my state of mind had been altered by a neurological deficit. perhaps deficit, perhaps wake-up call. this tumor unknown to me, lived through me for an unknown amount of time. often i wonder if it were a place where i lost a perception of positive living like the kind i had climbing out of the depths of osteosarcoma at thirteen. of course we can look back and form our perception of our pasts and construct them in ways keen to our current position. i look to the walls i will soon paint and i see the words, quotations acknowledge the world for its incredible capacities of positive experience. the quotes begin to take a turn to a more negative perception of the real world as the wall continues, the words are written smaller and the color is omitted. from these quotations, written upon the wall at different times, i see the travels my mind has made. i can mark my varying perceptions of an experience called life. i find myself extremely ready to paint these walls and start fresh again as i had once did at age thirteen. now twenty-one i conceal these past walls with new paint to clear a new slate from a renewed living. lately i have been writing many thoughts down in the journal next to my bed. this time in quick thoughts. short sentences that continues sporadically throughout the night, morning, day etc. time keeps layering for me and presenting me with rich opportunity to investigate this mind. today i've realized something. i am happy. extremely happy at that. happy to be living the life that i do. it baffles me that others are not able to see the magic of the world they have been given. i create work that begins in my mind, in my body and then is made external. my work, my words, all of it. it begins somewhere unknown, until sought out, until discovered. until researched. this living is a defined inquiry in my opinion. how can i live further than today if my words are now? i cannot move ahead of the present because i am nowhere but the present. we must live in the moment. why rush this life? what is the point? all that will be will be. this is something cancer has taught me. illness, pain, sickness, all of that has educated me to a greater truth. if i have lived today i have done my job as human being, by ceasing the day. by being the person i ought to be. the role the world has placed for me. it's all right there in front of us. and if we can believe in these ideals, these moments of living, we are freed. we are opened to a magnificent spectrum of fantastic color. so i ask of you. to open your eyes, your mind to the color. the color of the day that can so easily slip away from us if we do not pay attention to this living. we must honor our bodies, we must treat our minds. this is the reality of a living i have come to discover.-nicki
56. january sixth two thousand and twelve. 11:30 am
he has shown me a fresh understanding of an exquisite world. a brand new sight of living. his eyes have the ability to open my own. to open the world to me. his simplicity simplifies the complexity of living. it is in these emotions where i feel at peace. where i feel sifted away from any destruction and things just make sense. things just are, and sense can always be derived from being, from living this life. i have re-realized over again my need for this influence. i constant perceptual understanding of the world and our place within it. he makes it simple when complications sometimes mentally tangle. not many have this power of living. the 'making sense of it all'. but he does and i intend to learn more and more through living alongside such individuals. such specific perceptions of living. he has opened me up to world so lose that have previously gone unnoticed. he has brightened any spots of darkness in my understanding. i believe it is this acknowledgement of life and love that keeps me alive. keeps us fighting for another day. perhaps not fighting but moving gradually through the motions we are presented with externally from ourselves and reflected and understood internally within us.
i have found it necessary to engage in such a living with another human. i have directed my attention about three years to the workings of one in specific. he has enlarged my eye for the world in which he's traveled, in addition to the worlds we have traveled and those along with lands traveled together through his speech. he has maintained a passion for living during times i almost let go for my own. he constantly held on. falling was simply not an option of this living. he made that clear to me. he made life necessary.
i've always felt deeply of all things human. people and their place in life has been paid close personal attention to in my living. i've understood or experienced the many layers of this life, of living. i've understood what it means to have the layers of humanity cut away from your existence. to loose young lives at inappropriate and unfair times. to seek to understand these layers is to explore these facets of humanity through an experience of living. this experience does not always point to a clear understanding, but guides us in new directions. i simply have always been fascinated by the human mind, our function and movement through space amongst one another.
it has been my travel amongst humans ever since i was young that has lead me to the mental spaces i've continued to find myself engaged in. i feel as my soul has lived older than my years. i carry many with me through my life. many who did not get the same time increments but have i'm sure realized the magic in living. perhaps i am older than my years, perhaps it has just been the cards i've been dealt.
this act of living through time is an action i see reflected in his eyes. for once in a long time upon meeting him i knew he had that specific ability to reflect that same thought that lived within me about this life. the moments continue, the glances engage and yet i've understood of myself that there is still so much that i can known about this other. this other that has challenged me in the most positive ways of living. he has challenged me to continue on through steps of understanding. not many can sense these fleeting emotions. when you find someone as in tune with your living it is best to keep them close.
he has become very much like my right hand. my right arm. me being the feminist i am by nature, i have always found it incredibly necessary to live as a strong woman in society but what i have come to find we all can not be great alone.
i have looked to my father for strength my entire life and i am who i am and have been through what i've been through because of it. now i receive yet another attention of power, strength, and addition guidance in a man of my age and the experience furthers my living, my understanding of a once and always perceived complex world.
these ideas have been growing through the lines of my brain this entire year, battling yet another medical battle with these men along my side. what was most promising is the battle helped fought by myself alongside these men. strong and careful. i am lucky to have the individual strive for strength and power but i am always quite lucky to have the support in which i do. i am blessed to have been held up through this rough living by strong hands of faith and guidance from those who surround me.
it takes great passion to look to another in the very way he has looked towards me. this attention to living has saved me in many ways. at times where people on the other end could give up, i could understand the reasoning but he did not leave me in sickness. he stayed and pulled me from the darkness.
our love for people travels and disperssaes throughout this living. to our parents, our siblings, family and then so forth to new extraordinary individuals. i have been blessed with my own travels so far.
take time to pay attention to those who love, open your eyes to those who see you. and i mean really see you. to know another is a great task of understanding; of living. i am proud of who i love. i am lucky to love those that i do. they live within me to far extents whether they are fully aware of it or not.
to love is to live. to my one. -nicki
55. january fifth two thousand and twelve. 10:30 am
time in motion.
its incredible to sit here and not have enough time previous to this moment to say it has turned a new year of two thousand and twelve. i still felt myself caught up in the world-wind of a year. i still have no painted over my bedroom wall, i am still studying through past words in which i have inscribed but i know i am soon to remove them. i have some to a conclusion to move foreword onto to passages, new explorations of living and understanding. i believe these refreshments have been necessary in my life. i can't become entirely attached to past moments because then i allow them to strictly define me. i must recognize the freedom of living and the need to explore the worlds i move through. these quotes, writings etc. have engaged me in living and comprehension but i have taught myself even more of an understanding of space in which i live.
some time last week i went to go gift a writing i have made for my aunt and uncle who have helped me through the technicalities and emotional support of this past summer of my life. i started feeling overwhelmingly ill while visiting their house. i didn't feel right, whatever that term even means any more to such an altered body. i know something was wrong and i seem to be more and more educated on the workings of my human body. you'd be surprised to know many of us are quite clueless when it comes to our selves. this idea leads me to stress you all to try your best to understand the body in which you live. the spaces in which you pass through and the try your best to come to comprehend the mind which moves you. re-reading many of these wall quotes above my head it states very matter of fact understandings of a natural world. but after yet another battle with cancer i come to question many a things i thought i had once panned out.
time has moved quickly this year and i am partially thankful for that. yet at the same time i feel a need to catch up to the world that keeps living. no matter how many visits to the ER, no matter how many surgeries, scans, treatments, pills, etc. i am still alive and this is the greatest power of all we must recognize.
i find my thoughts a bit scattered this morning like the writings on my walls. i have found it time to consolidate these thoughts and move on from these places. i will keep these words inscribed in a personal journal for me to know. i have moved towards new words. i have lived through new ideas and experiences that engage me in new emotion toward the unknown world. we can never have it all figured out. your brains, our minds are far too complex for common understanding. they flex and alter, they moved and breathe. we are extremely flexible in our position on this earth. it is up to us to acknowledge this is come to terms with it. to follow the paths in which we are designed to take and make the best of them all. make the best of our selves and continue this living with a constantly increasing knowledge of our being in space, our relation to others and this complex world.
all the best for a new year of living. i can only hope cells corporate and time continues.-nicki
54. december twenty-ninth two thousand and eleven. 11:36 pm
i reiterate these words from the cover of today's newsday that i inscribed upon earlier today sitting amongst the sun.
it all lives within me, around me, above me. all that is real. nothing i can't find in the heart of my being. reiterated in the many books on the shelves.these are life experiences, an inquiry of living. these words we tangle and intertwine repeat through time. we see what we wish to and we speak what needs to be heard. living is the continuum of humanity. i find myself with a pen in my hand writing on a newspaper because it is the first thing i could grab. drowning out the sounds around me i engage in this moment. i live in this space entirely driven by these inner spaces. a pen and paper have opening up this world for me.
my papouli, greek grandfather, continued his stories of greece over the span of his eighty plus years of life. my yiayia as well continued with stories that brought me to new places. activity of worms cultivating silk which then became garments. i danced amongst these stories as they were told to me. "i was lucky in my life" says my papou. he mentions his older sisters i never knew. they passed way before my existence. he talked of their interests; these women i have never known. as the stories continued i found myself in the lives of his late sisters. he described them to me, manifesting all their traits i find similar to my own. one of his elder sister's found a love for philosophy and maintained a great inquiry for enhancing intellect and understanding of the world. another a seamstress who created garments for the other siblings and members of the family, especially from the silk women in their yard. these times are so far removed from my up bringing yet i find myself so closely related to my ancestors. my interests in which his siblings found in the arts with such creative and philosophical influence reassured me of my living thus far. i have always had a special relationship with my mother's father, my papouli. he has blessed me with these rich stories but more so has blessed me with his rich presence. there is something very calming about being around papou. perhaps because he has known much of this world. he has walked much of this earth and has fought many strong illnesses at times they were not well researched in the medical field. when i talk about what it is i create he really sits and listens with his deep years and memorable hands. there is power in every wrinkle upon his face. and even more power that lives in his smile as he glances your way after making a witty joke at the dinner table. he is the true definition of class to me that i had always hoped i could keep up with. he is a man who has taught me great poise and appreciation for living. his stories meld into the endless book i have written in my head for his life. there is always another story. another intrigue that comes my way. i feel these stories live with great importance within me. we all have stories you see. and it is always refreshing to hear a new one of foreign lands and untold moments of living. the relations have become more and more vivid to my own living as the stories continue. this is something i find most exciting about referencing the past, exploring these places and driving them to a new living that exists in the now. i am fascinated by the ones who have lived before me. for we are all built on these words that have begun long ago. 11:57pm-nicki
53. december twenty-ninth two thousand and eleven. 12:30 am
patience through re-discovery
i have found great strength in words and power in presentation. this has kept me very much alive and sane through these challenging times. i find my mind spinning recently with ideas of the future. future work needed to be made. future actions to further my engagement in this world. this simple idea of future spins continuously through my head. have i actually beat my second cancer? its jarring to even think i am allowed a second or technically third chance at living. i know what i want to accomplish in this life. i suppose much of it has to rely heavily on the help of others. i have always believed in the strong power of the individual. but have further noticed the importance of the other. i know i have mentioned this before but it is the existence of the viewer, that makes work what it is. what is the point of a painting without its viewer? we essentially create for each other. we cannot wholly live in a singular self-oriented world. this ideas have been abstracted within me all week. i feel my mind turning to these unsorted ideals i now try to hash out as i type. i express myself because i feel a need to. how my words are read and interpreted are their next existence, their continuing life. these thoughts simply fade through the darkness if i do not capture them through text. i have felt the need to capture these thoughts for whatever reason. reason for me is never fully clear until a later date. and even then the reasons lie open like a complex poem that can always be interpreted differently. i have decided i want to re-design my bedroom this week. change the colors i rest in, write in, live in. after my battle at 13 i had changed the space completely, declaring a new step in my life. i hadn't realized the caparison to my current project of painting and re-designing my room to that same process at age 13, until this sentence. i had beat osteosarcoma at age 13, and sought to completely change the space in which i lived. this altering would signify a new me perhaps. and unconsciously i have decided i want to repaint my space and alter it to become something new. i have many hand written quotations and stories and poems and ideas written on these walls and that is why i am finding it particularly hard to cover them. i have re read many of the quotes i have written through the years. particularly the joan of arc quote arranged near my head, "i am not afraid, i was born to do this." along with "just as i was reaching a point in my life where i was beginning to feel like a part of something, i've become restless for a new me. when you know who you are, new ideas are icing". Another above my head, "after all not to create only, or found only, but to bring perhaps from afar what is already founded. to give it our own identity, average, limitless, free"- walt whitman, another saying, "artificiality is never noble" "you have to believe in something great in order to be something great", "let the beauty of what you love, be the beauty of what you do", "this world in peace, this laced temple of darkening colors, it could not have been made for shambles" and yet another, "the more and more it goes on the more i find reason in everything". some of these quotes my own, some scientists, some musicians. these words have lived in this space and now have re-entered my head. words have always seduced me in such ways. to release my own thoughts through words has kept me alive. another quote traveling a bit further from the main wall reads, "i knew the world was not that simple" and "it is one thing to know the meaning of words, and another to grasp the intent". this one catches my eye at this attention to the walls around me. i have spoken many words this year as i faced new times. i had hoped these words traveled in beneficial spaces and have infiltrated the minds of other to provoke beneficial experience and understanding, or perhaps acceptance of the natural world. a quote found closer to the clock says "you have to believe in something greater than yourself, in order to be great". this hangs above the left side of my head. i have always believed that humility and self awareness brings forth great adventure and fulfillment in living. these quotes live through me yet again as i read each and every one over and over. i find it hard to think of getting rid of these quotes but like people, these walls have layers. we are all made up of many places is what i would like to believe. an attention to these places is a route to a self understanding. still unsure if these walls will be completely covered with new paint but i am ready to uncover the results. "patience" is a word i keep coming across on my wall and it is this very word i must pay attention to going forth.-nicki
52. december twenty-forth two thousand and eleven. 4:23 pm
"thanks for the dance"
i had been thinking of ideas to gift my father this christmas. every time i begin to conjure up ideas nothing tangible seems to measure up to the power my father has in my life. i believe he is the reason why i have survived illness with such vigor, twice. i believe it is my father who has saved my life a variety of times. i recall laying in a bed at age 13 in the hospital wanting to give up. he convinced me not to then. early this summer, i lay in my bed ready to give up yet again. he convinced me otherwise, again, that the power of living was more powerful than any disease. that my will power and reasoning for this life would beat any corrupt cell. my father reassured me that i was capable for living. i often think of these moments when i am with my father. he has been giving me strength my entire life. by my side through it at. my perception of him has only grown stronger. my love for him has only solidified with all of these trials and tribulations. it is my father that reminds me every day how very blessed i am. how very lucky i am to live the life i do. without my father, my humbling mother, by intelligent sister, my loving boyfriend, i am no one. it is those around me that define me. their love has saved me.
my father and i hold hands and dance through the living room playfully. as the song ends we part as he says "thank you for the dance", no thank you dad. and thank you to everyone who has saved me this year. merry christmas.-nicki
51. december twenty-third two thousand and elven. 11:57 am
Dear Aunt Kathy & Uncle Don
(a gift of words to you)
I often look through that kaleidoscope you gave me when I was younger. In the morning I can imagine these new exotic spaces. And I want to meet you there. I want to fly into these realms as a powerful and mystical fairy. I transcend into a space somewhere between my consciousness and subconscious experience of living. I feel myself dancing purely by seeing. What it has meant for me to create in this world now lives in their bodies placed on a shelf. I revisit this being from time to time and I know she lives within me, just as she sits upon my shelf. I am able to become her. I am able to outstretch her wings. I am able to take flight. These wings you have given to me. I have flown amongst many unknown places. But I have been given the chance to rest my wings upon your return of such an object I had once gifted to you. You have given me strength by this single act of exchanging the powerful set of wings. So now I have realized it is time to remove her from the safe box in which she has stayed this year since you have bestowed her on to me. Preceding the incubation initiated by you, I now ask you to once again outstretch my wings upon your blessing within your space. I thank you for these healing powers, and the realization of a kaleidoscope-worthy world. And if our worlds are not as colorful as we may wish, I now know it always has the potential to return to magnificent places. As I return her to you I can feel myself becoming free once again. I can feel these wings expand. I live again with strength and beauty in the fairy we have exchanged. I will never forget your kindness and prescience in my life during these incubating times. I love you from the bottom of my heart to the tips of my outstretched wings as I fly like the fairy that has saved me.
With Great love and thanks,
50 B. december nineteenth two thousand and eleven. 10:18 am
the continuum of living
i keep finding it incredibly challenging to find a quick moment to sit and type these reactions and responses reflecting on the life i live. but these are the times that are most exciting. to not stay still, or stuck upon ruling, is an amazing feeling. the other night after taking my chemotherapy pills i suffered intense pain on the left side of my head. it felt as if the pain was manifested in particles that traveled from my chin to my lip to my eye to my brain and back again. it was as if someone was piercing these parts of my head with a tool. the only conclusion i could come to as the reason for this excruciating pain was the pills i took ten minutes ago. i have been realizing that the chemotherapy is difficult on my body in different ways and increasingly as my monthly doses continue. so the night before last was it. it was time my body said it had enough of this regiment. the chemotherapy was included in my treatment plan to reassure the radiation work. sort of a just-in-case-anything-wants-to-grow-back-it-can't thing. fingers crossed that all worked out as planned. to face this idea of not popping the pills every night for one week, every month, simultaneously frees me and scares the hell out of me. it had become a clutch in a way to make sure something so deadly would never return. something so powerful as a cranial lesion would never re-appear. well i guess this fear has to do with living. no one ever knows what will truly come of their lives. it's a day by day venture i presume. and i need to be okay with that. i need to conquer the fear of being threatened by cancer. i need to eliminate any qualms and truly live and experience what i have been blessed with. when these spasms were occurring the other night in my eye particularly, i questioned blindness, although far-fetched from the actual experience, the pain reached those capacities of a visual expulsion. this idea of losing my sight was jarring. i then understood i must accept whatever comes to me. whatever i become. this is my body and i refuse to define it as a failing one. i cannot dwell on those moments on move forward. i can say that for anyone. we can make something of our experiences that does not have to reference the pain we have felt. we can all grow from pain. grow mentally, spiritually, whatever it may be for you, the darkness bears light if we let it.-nicki
50 A. december eighteen two thousand and eleven. 11:23 am
my birthday entangles with the day of the week, the tests we all must take, and the medication i swallow. i am now twenty one. of age they say. but i have been feeling old ever since i was thirteen. i was already listening to nora jones regularly for my MRI scans. the technicians always confused making such lived connections to such a young girl. i accepted this. i figured if people didn't quite understand me now, they would understand me later, when i was of age. i have always taken the world for its details. i have always seen living as a gift we are given. we have the power for choice making. and this is why i have chosen to view my life in the most positive way possible. we all do not have to face darkness to know it's powers. it is a wickedness. but these powers do not succeed passion. the faith to continue.-nicki
49. december thirteenth two thousand and eleven. 8:58 am
13 (post 49., 4+9=13. this wasn't planned)
this number has been ever present in my life ever since my thirteenth birthday when i was diagnosed with bone cancer. ever since then i declared this number incredibly important. a number worth paying attention to. for whatever reason this number has guided me in many situations. and many more times has just existed in many moments. thirteen screws are fixed within my right arm. thirteen stitches were taken out of my head this year. i stayed on the thirteenth floor after one of my surgeries this past summer. these are moments where i have entirely no control. ever since i was diagnosed with bone cancer i looked at that number as a silent support. that wherever this number lived, i would too, and it would i guess save me in these pieces i have passed through. most often this number is associated with a negative understanding. but for me its a greater aid of analysis in understanding the life i have been given. like an alarm clock, thirteen is s a reminder which wakes me up whenever it enters into my life. perhaps its a wake up call because it references my thirteenth year of life. which was difficult as all hell. but i am better for it. i have become who i am through that fight. and yet again this year i found myself fighting another battle. but it would be okay if thirteen kept appreciating. if my faith in a reason for living still existed i could beat yet another attack on my cells. well this is how i think. crazy or not i couldn't be the one to make that analysis. what i do know is that it is the faith in thirteen, the faith in living and perhaps luck that has kept me alive these past seven years. my birthday is tomorrow. wasn't so sure i would make it here before i regained a sense of true consciousness after the resection of the brain tumor. once all the drugs temporarily finished and allowed for me to heal, it was just me and the world which lie in my hands in a most peculiar way. 'what will you do now?' 'how will you see the world from this life?' in my mind the choice i had to make was clear. let this sickness conquer me or let me conquer it. i chose to fight. i would and will not give up, and why should i? no one need to sacrifice themselves to a diagnosis. i am very much alive. struggle will come to us all. but if we can believe in our place within the fight, i believe we can win.-nicki
48. december ninth two thousand and eleven. 7:35 am
an inquisitive understanding of living
as i continue these collections of ideas i find myself making reference to all of the people who have entered my life, who have been in my life, and who has made chance in some way to how i exist in this world, wether they are aware of it or not. people have found interest in my story, in the subject matter of my living. and it has been refreshing to hear everyone else's take on something so powerful that has traveled through me. that once negative power becomes positive and renewed blood now flows through me. i share these emotions and approaches to my perception of this world on in these very writings to release these impulses i have. when i write it comes instantly and i must quickly catch what ever idea floats through. some are deep seated but are not always made conscious. these moments where my unconscious is made conscious through my work, thoughts, and words, these are the moments i find genius. genius to communicate something powerful. genius to touch someone on a higher level. when beginning this series of writing i knew it was essential for me to release the thoughts that occupied my brain constantly. i have taken closer notice to the world in which i live. and i am better for it. i am more aware of this world. possibly because it was almost grabbed from right under me, or right inside me. coming to terms with these actions of the past and using them as fuel from a greater future has been the task i was given this summer. this point of my life has been critical, yet incredibly informative to an understanding of the self and how i exist within space, amongst all. since i have made such a personal experience known to a greater group of those who listen and inquire, public i have made myself vulnerable in many ways to your perceptions. this has been one of the most rewarding experiences for me. in life and healing. being conscious of our personal thoughts and perceptions is incredibly vital when facing something as powerful as cancer. i have always felt emotion deeply. my thoughts are always running regarding the ones around me. and it is a pleasure to know they reciprocate that action and interest in a story i call my own. so i thank you. for taking the time to find interest in a story such as mine. to take notice in the work of my own. and i thank you for being there for me. driving me to a continuum of creation and an inquisitive understanding of living.-nicki
47. december seventh two thousand and eleven. 1:43 pm
this week so far
this week has been already extremely rewarding for me. it began with monday. i had to de-install the show from the hospital gallery and as quick as it went it was okay that it had ended there. the show is ready for a new space i believe, for new eyes and new beings to experience it. hopefully the opportunity arises and i am able to exhibit the show in another space, potentially again medical. with the de-installation i find myself occupied with creating a mass of entirely new work. it references a past but is clearly moving forward to touch upon new subjects, new places, and new emotion. a few months ago i had imagined that the work i had created would be my last, that with a sickness such as mine, the thoughts of creativity and production would fade amongst the lack of strength. but wrong i was. for during all the hardship i continued to make what i felt necessary. making work has saved me in many ways. it has kept my mind busy and my direction focused. class on monday was incredibly emotional for me because of a certain someone. we entered the room anticipating a performance piece. and a phenomenal performance is what we got. filled with tiring emotion, struggle and a desire for regaining strength the piece was incredibly poignant. extremely tall sculpted shoes initiated the struggle while they existed with sharp nails jarring through the wood and plastic melted down the sides with duct tape wrapped around the foot and ankle to maintain its place, but only for a short amount of time. the sound of philip glass furthered this emotional space in which the entire audience engaged. by the end of the piece the shoes are off and the performer moves slowly in this state of exhaustion. the black duct tape wrapped around his feet remains left on his ankles. the duct tape also covered his entire face leaving his eyes and nostrils exposed. this lack or loss of identity in his performance ran deep. i felt this pain he performed. it was familiar. he had made the piece project such an aura he had the entire class speechless. and then after a bit of positive critique the professor asked him to discuss his intent for such a performance. he then delayed on his reasoning as he became choked up with emotion. naturally that is expected from performers exuding such emotion and investment in their work when revealed to others. but this emotional side was one i had never experienced with Jarrod. of course emotion exists in his work and he comes from an emotional place but he is always collected in his presence when pieces end. he became so emotional because he said the piece was about me. i too, sitting across the room from him in critique, began to cry- which is something i rarely do. soon the entire room was consumed in powerful emotion. i didn't cry because i was sad but more so shocked that someone had taken such detailed notice of my battle. that someone had the impulse to create an artwork based off of my life. he tapped into such an intense part of my journey and my existence. he became me, transformed in another world. i felt understood when he spoke his intent. the piece was called "Dear Nicki" and to be recognized in such a way by someone with such talent was incredibly humbling. Jarrod and I have always connected on an unspoken level. his talents have always enticed me and lived in my brain. yet another of his, involving the activity of my brain. his interpretation will stay with me forever. so thank you Jarrod, for your inquiry, your attention to space and passion for what it means to be human and create. remember the name Jarrod Kentrell.-nicki
46. december third two thousand and eleven. 1:35 am
understanding in that magic
i have found myself in this state of renewed fuel for creation. the world feels completely new to me all over again. perhaps it is that my health is progressing in a positive direction that has given me this renewed love for living, creating, and simply being. i can't necessarily define its origin only to think of my recent discussion with a friend of now two years. we met in may of 2010. i have found our interest in this world highly relative to the products we have put forth. although aesthetically different our drives for creation are both held strong. there is a magic that occurs when making work. to be able to find understanding in that magic is personally rewarding. we all need to be understood from time to time. and i have found in the realm of creation it is essential to have those people around that are there to listen, discuss, debate, and perhaps understand what it means to make work. understanding the need to create. where the idea of "optional" disintegrates and this way of life is "necessary". i have found inspiration in my friendship. and i hope he has too.-nicki
45. november thirtieth two thousand and eleven. 8:51 am
jot down on my desk: don't ignore the impulses
these thoughts swoop down from where ever and enter my space. when they do i must try my best to catch these fleeing energies that live within me for very short periods of time. it is early and the room is brisk. the day is new again. time flows. i write "there is no way we can know ourselves entirely. we can only aim to understand our own existence and place in this world. our best attempts at making sense of it all will point us closer and reveal the very unconscious connections we have to this world. one must not only question, one must accept the world and its energies." i can only further these thoughts of a continuation and ongoing reason in space by recording these words that move so quickly. we have sporadic thoughts for a reason. we have energies and impulses that guide us through living if we choose to listen, recognize or adhere to them. to know one's self entirely is an impossible task. we can only aim to understand worlds that have completed, actions that have past. and hope that we gain knowledge that guides us more wholesomely toward a future we are more willing to accept. don't ignore the impulses.-nicki
44. november twenty-ninth two thousand and eleven. 6:19 pm
to finish a continuing book
as i sick select, copy and save i reiterate the words i have placed here on this page. i have given them another space to exist, along with the space within your mind. it gives me great pleasure to discover upon telling who takes part in my words. who follows such language and continues their day with additional thoughts placed from one mind to another. at first i simply intended to dissect my own mind, my own experiences, and emotions. i found it incredibly necessarily, urgent actually. i knew it was something i needed to do. i needed to be heard, but more importantly i needed to release. placing words on paper, as well as on this site, and making work has been my way of making sense of this world. it has been my portal to understanding the complexities of the human body and human mind. i complete the book only to continue it virtually at this address. the book will become it's own thing entirely. referencing these moments i have had here on this virtual page. however incredibly stretched to new dimensions of space. -nicki
43. november twenty-fifth two thousand and eleven. 4:54 pm
i begin to write this entry as i sit in front of my window watching the sun recede into a fire of deep reds, purple and electric yellow. the darkness becomes new again and i cannot be trapped for i have been here before. i have known this place.
i received an email the night before last and it fulfilled my intrigue for people. it was a message that although written abstract in many places, was perceived incredibly true. it read clear to me in all its versus and statements. it is from a new friend i have meet studying and making art. in my eyes every great creator has a story to tell and reason for being whether they are keen with defining it as that or not. sometimes i believe that each individual picks their fate. and often i find it questionable that we drive our path. perhaps we are placed here on this earth for a specific path. perhaps we follow these motions that are left indescribable. maybe that is what living is. maybe there is a reason for this. we each have our own place in this world in which we must fulfill.
so i sat and read this email i received and the words flows like paint into my brain. the words enveloped me completely. first she spoke of me then of her. then she mentioned her family, her experience, briefly at that. she sends this link to this song and it plays as i type. she enters my space and continues to explore with her words.
"you walk around inside my mind with hands full of oil paint...you have an everlasting supply, no matter how much you rub into the walls of all my thoughts your hands remain fully loaded... you can stay in there as long as you like with all my other wizard friends. we travel through dimensions quick like foxes."
to _TARA i feel it necessary to write this passages in paragraphs, separating my thoughts and dimensions. it is believers in a world such as yours or ours that bring me to a beautiful place of living. i know there are many thoughts. lots of thoughts. and the world may or may not deserve them all, but the sounds they ring in my mind with your footsteps lead me to a place of understanding, or simply a place of experience. we can meet at this place whenever you wish. i am hoping it involves a complicated space and sound piece in which we create as one mind collided from two.-nicki.
42. november twenty-second two thousand and eleven. 12:27 am
amongst my systems
last week i was asked to meet with a friend whom i met last year through common friends in new york. we both agreed to meet for a cup of tea. the two of us began our discussion and immediately i knew i had a connection with this woman. not because of our origin, not because of the way we look, not necessarily because of what we believe in, but rather what we have both have been challenged with. what we both have stood straight in front of. and what questions we had to sit and ask our selves. it was cancer that brought us together that day at lunch and has strengthened our connection toward each other. sitting across from her, she questioned me for a class she was assigned to write an article for. finding interested in my story dealing with both osteosarcoma and a high grave glioma, she had a few questions to ask. i've never hated questions. i have always thrived off of them. i believe questions make us understand ourselves even more. it leads us to possible conclusions and reasonings as why we feel the way we do and why we are the way we are. i had no problem revealing any of this to her, particularly because she understood a lot of the emotion i spoke about. she understood because she too was battling a form of cancer that resided in her thought, which was uncovered this past summer. we both had challenging summer, and to sit and discuss and compare was so freeing. what i find incredibly interesting to our connection was that this entire summer prior to speaking with her about my condition, as well as her own, i would listen to music i had downloading online created by her. she has gotten me through many a mornings heading into the city by car. one specific track, "high hopes" still strikes a cord in me every time i listen. most of the music created, i believe was produced prior to her cancer diagnosis, just as most of my work i displayed for my most recent art exhibit. these impulses for creation that i had right true for my friend as well. these unconscious emotions and actions that take place point to a more telling future, based on what i have experienced and seen in my friend. i rarely if ever bring up specific individuals when i write here but i felt compelled to after my afternoon discussion with a fellow cancer battler. we entered into each other's lives previous to our diagnosis's and have reconnected because of our conditions. there is great strength in connections such as the one i have found in another. the power of words to be exchanged can humble one completely. to connect on these intense moments of living with another my age in new york is simply incredible. the talent and humility i find in her i hope to reciprocate in my own ways. again i find there are reasons for the things that occur. there are reasons for individuals to enter our lives. perhaps we just need to stop and take the time to think way. or possibly just act on impulse and live in the way that feels best to our being. restrictions must only empower us. -nicki
to listen to the music mentioned click here:
41. november sixtieth two thousand and eleven. 11:21 am
something so simple, never really is
so i just got my psychology midterm back and i did extremely poorly for my standards. i started the week long (per month) prescription of chemotherapy pills this week. i am currently experiencing a sort of battle of emotions and ideas as per what is going on. i am mad at myself for doing poorly but i had just gotten my shunt replaced when i took it. so what is more important? my health or the test? what was the test measuring anyway? my ability to remember quick facts thrown at me? we all know that whole memory thing isn't my strongest these days. this one little packet irks me. it feels like a result of an uncontrollable experience. i guess similar to first being diagnosed with brain cancer. frankly it pisses me off. i've always viewed myself as on a track for accomplishment. when a failing grade comes my way i do not swallow it well. what do these 'failures' mean anyway? that i do not understand the workings of a psychological mind? or that i simply have no clue of the researcher who played with some colors and numbers. i guess i am bitter at my poor grade. but i am also bitter at certain practices in this world regarding the human mind, its practice and experience. this whole experience as miniscule as it appears has really opened my eyes to perhaps designing my own second major. these categorizes are quite strict and aligned in particular ways. i never saw myself as categorized in any specific box. whenever setting up my resume i had too many things that spanned across the board. for me, i can not sit in one place for to long. or paint a painting for too long. i need to move quick. perhaps it was how i entered this world. perhaps it was after my thirteenth birthday and battle with bone cancer that installed a drive in me to spread my interests and interactions wide to fully experience this world to the absolute fullest. i guess what i am trying to conclude or figure out here is why i failed that midterm. why it looks over at me as i sit at my desk like a bad MRI scan, is what i am trying to get at here. i don't want to blame my illnesses for my inadequacies on psychology midterms. there is no point to sit here and find myself frustrated and angry and what i have been through and the resulting performance. if psychology is about remembering facts, maybe it is not the field for me. i always considered myself to understand people quite well. i found myself dissecting the problems of others and reaching moments of clarity for them. i enjoyed this. it gave me and my sicknesses purpose to help others. if i could use the pain i have endured to educate or inform anyone, there was reason for it all. when i came home last night i looked at the notes i have placed alongside my bed. there was a note from a girl i had met when i was battling osteosarcoma in the hospital. she was gorgeous. she had great poise and confidence about her. i wanted to be like her. she had her own clothing and jewelry line that benefited cancer battlers and the awareness of pediatric cancers. i sent her a "nicki ray" sweatshirt (my first brand of custom clothing) to raffle off at one of her events. this meant everything to me to be a part of something benefiting girls just like me fighting for their life in their teen years. so i read this email i had printed out from her after she received the sweatshirt i sent. it was short and sweet, but gave me all the gratitude in the world. i looked up to her, always. she inspired me to do something greater with my hands. to continue my interest in paint and clothes and everything i have produced until now. i don't think i've acknowledged that along the way until this moment where it becomes conscious to me as that note stares back, who has pushed me along the way to make the work in which i do. i haven't thought or wrote about her or any of the girls i knew at that young age who all unfortunately passed. there is a certain feeling of loneliness i feel when i think of them all. i wanted us all to make it. only i did. and at times i do feel guilt. which i know i shouldn't. we have little to no control of the lives we live. to those who enter them and sometimes leave. it has been hard for me to find reason but i have to believe there are reasons for everything. so there has to be a reason i failed my psychology midterm, right? these are the directions in which my mind travels constantly. sometimes i am completely unaware of it all until i begin to speak; in person or on paper. something so simple, never really is.-nicki
june 2006 "the one to get away"
40. november tenth two thousand and eleven. 9:26 am
paintings of the past
i woke up this morning and one of my paintings i had hanging on the far wall caught my eye. i and many others don't always stop to scans the walls in which we inhabit we just go about our daily lives in and out of these spaces. so i just lay there and studied this work i painted back before art school. before i consciously made 'art'. it shows black paint painted on the stark white canvas. on the back of the canvas reading june 2006. there is repetition of a circle forms that overlap and repeat. there is one circle that extends away from the group; as if it were escaping the darkness. i titled this work, "the one to get away" back when it was made after my first battle with bone cancer- three years in remission at the time. these were my hopes- to get away from the darkness, to conquer the illness. at that point i had made it. i had escaped the darkness of cancer. i've always had a fight in me but i believe it was my perception of living that kept me going. i never accepted an idea of leaving this world. of course i brought it up. of course i've thought it. when faced with great challenges the mind travels in unbelievable directions. yet i never gave it all away to my sickness. i could not let it win. i believe that is why i have survived my second trial, thus far. looking at this painting reminded me of that drive i had at such a young age. the determination for living. if i did it then i can do it again. that is what i must believe.-nicki
39. november ninth two thousand and eleven. 9:44 am
today is a chance to open myself up through my work. it is a both comforting and unsettling experience to reveal my thoughts, my life in such a way. i hope for my work to be experienced for what it is; not merely presented. cannot wait to see all who have played a part in my life tonight.-nicki
38. november sixth two thousand and eleven. 8:05 am
the time we hold. our definition of such.
when i was first diagnosed with osteosarcoma at age thirteen of course i was scarred but i don't believe i ever questioned if i'd make it through. i think i just naturally set in my mind that the bad days would eventually pass to a brighter future. yes there were moments where death seemed near but i never accepted that place. now looking back and feeling like i am coming out of a place like the one when i was thirteen, only now at age twenty i find it possible to believe in my second survival. i have always thought that my outcomes and my results have to do partly with nature and partly with my thoughts, beliefs and perceptions. if i believed enough that i could survive, i would. who knows if this has any truth the every human but i know it carries some truth with my own story. yes it has to do with believing in yourself but believing in the time we are given. believing that we have the power to keep that time as our own and continue to experience this world to the best of our abilities. i woke up this morning thinking these thoughts and i knew i needed to record them. it has taken time to get back to a feeling for freedom regarding my body. often during treatments i have felt entrapped in a space i have no choice of betraying. my body has been left alone for a while and it has been given the chance to live again, to function as its and my own. these are the chances i have again received to live this life. i looked up upon my wall next to my bed and read a quote i had written back when i was about a year or two out of remission from bone cancer. it says, "let the beauty of what you love be the beauty of what you do". below it another quote reads, "I AM NOT AFRAID I WAS BORN TO DO THIS" -Joan D'Arc. i knew this life was worth living and that time was shorter than not. we are given tasks we must accomplish whether comfortable or not. it is how we respond to such trials that define our space on this earth and our relationship to fate, faith, and a natural world.-nicki
37. november fifth two thousand and eleven. 12:55 pm
as i sat in my living room i gazed out the window to find my young neighbor raking the leaves which covered his entire front yard. there was something systematic about the way he moved. the entire time i sat and watched his movements in related to the ground in which he walked. i wondered were his mind lay. there was this connect and disconnect relationship with the group in which he walked. i thought of his life. his thoughts. his aspirations if any. it got me thinking to think and space. reason and requirement. i then found him restless again failing to rake the rest of the sporadic leaves. he walks inside and then returns with an ipod he then plugs into his ears. he continues to rake more effectively at a fast rate with consistency. it got me thinking to the many days i plugged those buds in my ears as i journey to the city for treatments. the boy began collecting the leaves on the left side of the yard. this is where the pile lies. the grass most covered with the leaves is found furtherest from this pile as the racking continues. i watch him journey from one side of the yard to the next. this is the point where he lifts the rake off the cleared group until he reaches the further patch of leaves he then drags back. this journey of continuity fascinated me in its simplicity. it seems as though this boy does not have a chance whether or not he can rake his lawn or not. he is forced to face this action, to conquer a task through continuation and patience. every so often he would stop to adjust his ear piece, perhaps to change the song, perhaps to hear it more precisely. i feel for his track, to and fro, back and forth, side to side, collecting, removing. the sounds seem to keep him moving. i wonder when he will finish the task. when his mother says so or when he decides? like a doctor to a patient how much control do we have over our bodies in space?-nicki
36. october thirty first two thousand and eleven. 9:12 pm
discovering a new appreciation for life
this week has gone off to a moving start. i attended church this sunday after not being there the entire summer and beginning of fall. i reentered the church and was met with an overwhelming power of strength of mind, body, and soul. the hymns flooded through me. my presence was acknowledged. it was acknowledged by all those who have heard my story, who have read my writings and some knowing me my entire life heard of my battles. it is an overwhelming experience standing in the church as people pass by exchanging either an eye of positive acknowledgement and happiness to overwhelming embraces and words. many of the older women of the church who i have seen my entire life stand in the pews loyal to their belief and loyal to their people. i can not speak the language they do however we exchange something greater than language. faith, belief, and strength to living existing in a harmonic world. let us be washed form all sin. let us be cleansed of all cells that cause harm. it has been said that there is a reason i survived these sicknesses so far. there is a place for me. there is a place for everyone. we must just humbly acknowledge what it means to exist on this earth. why we are chosen for such tasks of specificity. i believe there to be reason no matter how hard it is. this is life and we must accept it. -nicki
35. october twenty-third two thousand and eleven. 1:08 pm
i am still awed by the amount of people who have reached my way to say how i have in some way impacted them. i have rediscovered a lot of myself through this battle and i have not hated my life because i have had challenges. when i hear the words of those i have not spoken to in either a very long time, or ever, i am humbled to know such a story as mine has influenced them in any way. the words that follow a silence feel so powerful to me. i always wondered why people weren't always up front about their emotions or thoughts. why it took something so horrible to make someone voice their view of you. of course if we spoke often of deep thoughts we would loose the power of those specific words. so i guess i can understand. for my recent diagnosis i have accumulated a very vast collection of written thoughts from others. these thoughts have come to me so often i haven't even had the time to respond to them all. but maybe it isn't about a response. it is about the reading. the acceptance. receiving such words for people i have never had a serious conversation with, speaks volumes. you do not have to know someone personally to be effected by them. the strength of action formatted into the readable writings lasts forever. it points me into the direction that everyone is inherently good. everyone seeks for an attention to human bondage. everyone feels the pain and acknowledges the hope for living. we each have to open ourselves up to a world we are able to define for ourselves as a positive place. we are in control if we allow ourselves to be. i thank you everyone for sending me your thoughts. and i encourage you to act upon such ideas you have about life, courage, and communication. i have learned much for you all. we need each other whether we'd always like to admit it or not. -nicki
34. october nineteenth two thousand and eleven. 1:06 pm
so i started typing and reflecting on my life, my worries, my future, my faith, and the application quit. so i lost it all. i lost those words. it becomes simply vague and all the points i once typed vanished forever. i think this has led me to become actively conscious in recording thought and experience. i fear that if i do not write it down, it will be lost forever. i look to all of my journals, sketchbooks, papers, etc. and i find it incredible how i have completely forgotten about so much i have created. the connections between the imagery and thought is not always concrete while it is being made. i find my connections after more often than prior to creation. it makes me think about the brain's activity in choosing certain thoughts to handle. it makes me think about the brain's activities, functions, and processes, and how little i know about the way my own mind functions. how little the most intelligent physicists know about this complex organ. perhaps we are not meant to know some things about this world. i think about how cancer has faced me twice. i then think of fate and if i have challenged it. was this always the plan set for my existence by a greater power or have i rearranged the plan by beating these two deadly illnesses? what was 'supposed' to have happened versus what has and what will passes through my mind often.-nicki
33. october thirteenth two thousand and eleven. 11:45 pm
i'll never forget age 13
i've been thinking a lot about all the girls i have met back when i was thirteen. there is a list of about 5 girls who i met while battling osteosarcoma, bone cancer. they too were faced with large challenges of life threatening cancers. unfortunately all of the girls who i met that year while undergoing treatment, left this earth. i was the last one i knew of that was left. the number thirteen ever since diagnosis became a lucky number for me. such an intense experience at such a young age allowed me to grow up and appreciate every breath. of course i think about these girls who left me often. i wish i wasn't the last one standing. i wish they were all here next to me, strong as ever. in my heart i know they are just that. so this second introduction to cancer has made me think about all these girls again. they could not make it through their first diagnosis for whatever reasons. who am i to be able to make it through my second? i sat in my room today and i looked at the date and i thought of each of these girls. all my recent scans look good and everything besides this shunt has been a positive outcome for me. but what if? what if something goes wrong yet again? of course these negative thoughts squeeze in once in a while. today's date overpowered me. 13. i felt taken over by these emotions thinking of those girls who have graced my life in my teenage years, who have pushed me so hard in spirit to live. sometimes a breakdown is necessary. sometimes reflection is a must. i pray that these girls know my thoughts. i'll never forget such presence. i'll never forget such strength of living.-nicki
32. october eleventh two thousand and eleven. 10:51 am
finally a chance to write
it is crazy how fast time has gone. the last moment of reflection was about a month ago. a lot has happened since. a lot of good and a lot of unfortunate. so the second shunt that was installed on the left side of my brain failed within a week of its installation. i am even confused with what went down and when because it all went so incredibly fast and was so unexpected. so far two of my shunts have failed. the shunt is installed in the left side of my head, right above my ear and travels down to my belly. it's noticeable if you really look. but otherwise it will go unnoticed. the surgeons are incredible. it is not their fault the shunt failed twice already. they say its about 20-30% chance that the installed shunts will fail on patients. well i guess i am one of those 20-30 percent-ers. so be it; this is the card i have been dealt with, i must deal. the good news is that after viewing my most recent CT and MRI scans of my brain, the previous radiation treatment and continued chemotherapy has done its job. so that gave a sign of huge relief. the current worry is the sustainability of the current shunt. once my wounds heal a bit more i will begin on the chemotherapy pill regime again. the chemotherapy is a "just in case" activity. to really make sure that i am crystal clear up there when it comes to tumors. so things are good but still really challenging and time consuming. but who expected anything less? this is life. this is my life. there is no need to dwell in the pain, in the experiences, but learn from what we have done and what we have been through as humans on this earth. i believe there is a reason. i knew when i got assigned a room in the hospital on the thirteenth floor that there had to be a reason. it is this number that reminds me every day of why things happen. we will never fully know the reasons to anything. we must accept. -nicki
31. september thirteenth two thousand and eleven. 11:30 am
so it started in my performance class when i was extremely cold and seemed to be one of the few. my temperature was all kinds of wacky and that's when i noticed my eye sight was short-circuiting in my right eye. maybe i was too cold, maybe i was too tired. i searched for all reasons as per these odd side effects. i found myself nauseous and every sight of food. not having any idea what was going on with my body i knew i needed to either get to a hospital in the city or get home asap. so after a horrible train ride i landed myself at home in excruciating pain branching from my head to my neck and shoulders. this kind of pain wants nothing to do with tylenol. after a few moments of discussion i was off the the city again to the NYU medical center. it is some kind of feeling having the entire room gage at me in pain like some kind of spectacle or twisted circus show. after some more moments of wheelchairs and head pain tied with some IV pricks and blood searches i was set to go to surgery around 2 am i believe. the nurses were phenomenal and of course who can forget the guys doing the cut and fitting. incredible. within a few hours i was out and feeling a million times better. i was told the previous shunt became clogged and hence was not draining the fluid it was set to be draining in my brain. i must say having to experience this whole ordeal a second time was no walk in the park. fingers crossed this one works. i was re-copping on floor 13 after all so hopefully that is a positive sign this time it'll work. all kinds of adventures- never know when they're coming.-nicki
30. september twenty-seventh two thousand and elven. 8:41 am
creating to face it
now back creating work on a timeline, i am forcing myself to face thoughts and ideas i've had of my experience. i feel it is essential for me to explore these thoughts, ideas and reflections on what my life was and is. it is interesting when i approach a new project, a new concept. almost everything i have been creating has to do with what happened this summer. what cultivated me to write my thoughts here on this page. i do not want to shove this life experience under the rug. there would be no purpose to such living. there is a reason i believe for my diagnosis. there is a need for me to explore these life activities or challenges and resolutions. i am not saying it is easy, but i find such activity essential. perhaps this applies to many if not all people. there is no progress in ignoring. there is no benefit from shoving emotion under the rug. like anything with importance we must face it head on. as humans we have all the ability in the word to dissect our fears, or pains and eliminate them. physical pain and experience has everything to do with a mental one. each and every one of us has the abilities to create amazing things, have amazing thoughts. there is great mystery, that we know. it is all intertwined and overlapped in the beauty of living.-nicki
29. september fourteenth two thousand and eleven. 8:35 am
as i continue on with making new work and exploring new thoughts, ideas and past experiences, i face certain challenges i never really have before. it has become almost painful, emotionally, for me to carry out certain tasks in my art work. but i find it necessary. it is essential to confront these discomforts and to make something of them. perhaps this is a lesson that applies to all facets of life. we must face the pain and discomfort, the uncanny. when creating my most recent video piece Brain Rotation i tapped into these states of medical discomforts. the perhaps hostile feeling of laying as a subject on the medical table, an inhuman subject. this alienation i have felt so often in my experiences is not comfortable by any means; and that is the point.-nicki
28. september ninth two thousand and eleven. 10:37 am
gamma knife procedure
yesterday knocked out by a combination of drugs prepped for the gamma knife radiation procedure. the headpiece seen above was tightly fixed to my head to the point where it drew blood. this fixture is put in place so no movement occurs and the radiation is pinpointed to the exact location of the tumor. to tell you the absolute truth i do not remember 90 percent of yesterday. i was conscious but highly drugged. the power of substance is amazing. i am feeling stronger today and am keeping myself occupied with all the upcoming work i need to accomplish. it is essential in my life to keep going. i can and will not be defeated.-nicki
27. september sixth two thousand and eleven. 10:32 pm
so i have not provided a count-down, or picked out a celebratory cake for the gamma-knife procedure i will undergo tomorrow morning. i have been avoiding my thoughts on the whole issue, pretending it was not part of my near future and everything was peachy keen, back to school and back to normal. not quite. after dinner i see the plate of pills i must devour later tonight to start up round 2 month 2 out of 6 or 7 chemotherapy pill regiments. the air was colder today. my curiosity in the world around me fell short and an introspection of tomorrows event sunk in. its one thing to taste what it is like to live again- to be okay; and it is another to imagine myself in a dark state of helplessness. i need to do what the experts say i need to do, right? it is a frightening thing when making decisions for your own well-being; making decisions for a future. i am scared shitless for my future, because i am completely blinded from any affirmations of health. but then i think, aren't we all this way? anything could happen to anyone, so what makes me worthy of complaint? nothing. this is the road i have been given and i sure as hell am going to continue on it for as long as i can. finger's crossed tomorrow goes as planned and the tumor is obliterated. maybe when it is over, i will eat cake.-nicki
26. august thirty first two thousand and eleven. 9:32 am
there are moments where i stop and wonder has my life changed all that much? people talk to me like they always have and i am not directly bombarded with questions of health. i hope to be seen in a variety of lights. i never was dedicated to just one. i don't believe anyone should limit themselves or be told to limit themselves. after this summer i was unsure if i would be strong enough to return for the fall semester. what i have been wondering about is this connection between a physical body and a mental state. how do each control of become manipulated by the other? perhaps it is the power of thought that sustains our 'living'.-nicki
25. august twenty fourth two thousand and eleven. 10:11 am
the numbers keep changing
it is amazing i have made it this far in my mind. and all jokes aside living is a highly mental thing. accepting my disease was one thing but learning to live with it was another. how can i continue on with living in a successful, productive manner that furthers my place on this earth, alongside beating cancer? i hate losing, always have. this is where i get my drive from. a inner fire perhaps. i think of all the young people i've come across who have passed from different forms of cancer. and now on my second round i wonder how i still get the privilege to live. i guess a lot of people may automatically think thoughts such as 'why me', why did i have to suffer this sickness? well i've been thinking 'why me' why am i given the chance to continue to live? there has to be a reason. and this is a thought that fuels my fire of living. i have not found the world any more beautiful than i do now. everything is new. the mind is a powerful thing.-nicki
24. august eighteenth two thousand and eleven. 12:05 am
feeling like a 'terrible two'
i've been experiencing serious withdrawals from the decadron medication i had to take last week over a minor scare. it is an anti-seizure drug that is utilized to prevent anything crazy from going down. everyone responds differently to the drug, so i've heard, but i am not it's number one fan. i become super depressed and emotional when weening off of it. i'm pretty sure i was hysterical crying this morning for about 20 minutes after cutting an avocado that had gone bad. was it the avocado that made me so sad? no kids it was the pills i had to pop a week ago. i had no legitimate reason at all to be that upset at that bad avocado. we had another one in the fridge. it was the weirdest experience. while i was crying i would simultaneously be encumbered by sadness and then suddenly realize how stupid i must have looked crying over some failed guacamole attempt. who does that? well on this summer day, i do. i finally made myself get out of the house after a few more bouts of hysterics and then re-realization. once i got in my car and relocated it was as if nothing ever happened. it was as if i was guacamole queen on the most beautiful day of summer; despite the lack of guac. it seriously fascinates me that engineered chemicals called medication have such intense and odd effects on the human mind and activity. you have no idea how excited i am when i do not have to take any sort of pill. so after my pill-popper's tantrum i threw today, witnessed solely by my pup- thank god- i aim to seek some 'peace of mind', whatever the heck that is supposed to mean these days. good night. -nicki
23. august fifteenth two thousand and eleven. 7:26 pm
perhaps a common part of living
so it has been some time since i wrote. it has been some time since i took a moment to reflect on everything that has happened this summer. i have found it a bit painful to look back to the past season. it is both insane and incredible to find myself in the position i am in now. the tumor has shrunk, yes. but the likeliness of it returning is another unknown. the next step is called a gamma-knife procedure. where the radiation is utilized as if it were a knife slicing through the brain, removing the cancerous tumor. the entire procedure is said to take approximately thirty minutes or so. upon description i felt like it was a scene to a bad horror, psychological, medical thriller; but no, just my next procedure. i sit in the various offices listening to the doctors speak and i experience these two states of consciousness. a present one and a very distant one. the present one understands the reality of the situation, perhaps accepts it. but the other distant state is the side of me freaking out that i am sitting in a doctor's office hearing about the gamma knife procedure they will be performing on my brain in the coming weeks. i try my hardest to stay calm. or just stay strong whatever that means anymore but it is no easy task. i will be the first one to admit i am scared shitless. not only am i praying this will work, i am praying this will WORK- as in forever, as in never again. as in, I CAN HAVE MY LIFE BACK. whenever i make comments like that i shake my head at myself because i know it is not fair to think this way. everyone is presented with such challenges, and everyone has to face uncomfortable things. i am not the only one having to deal with such challenges, and i am reminded of that everyday. i cannot stress enough how important it is to realize the amazing facets of living. there is simply no need to wallow in depths of despair. there are always going to be illnesses. there are always going to be tumors. and whether i like it or not i need to get over it and keep living. if i don't, i am defeated. after coming to terms with what is, i can look toward a future. it is one thing to miss the thicker hair on my head. and it is one thing to miss the distance i used to run. it is one thing to long for that internship i worked so hard for. but it is another thing to realize how incredibly lucky i am to be still breathing. i am hoping to continue school in the fall with a lighter load of credits. i know doing a whole lot of nothing never has done and will never do me, any good. i have always been an active person, with a particular innate rush in me. perhaps i was pushed by my battle with bone cancer to move quicker. who knows. perhaps that is just who i am. perhaps i know what amazing things i am capable of receiving from this world. i aim to seek each and every one of them in my lifetime. we can not be afraid of the lives we live forever. there are no definite answers. there are no definite reasons. all we can do is embrace what it means to live. -nicki
22. august third two thousand and eleven. 9:10 am
so the wait ensues to discover if the radiation/chemo duo worked at all in my favor. it is a bit of a tease i must admit not knowing your own fate or lively-hood. i return in a month for CAT scans of my brain to affirm the tumor has left the building. so the current state of my life is a bit odd. its a mixture of unknowns. i have to learn to accept and live with them as normal. i guess we all do really. perhaps i am not alone on this quest. we think we can plan our life as we would follow a road map. but truth is there will always be some road blocks, some construction, and traffic.-nicki
21. july twenty-fifth two thousand and eleven. 3:20 pm
as i pick up Borges' collection of fictions with little knowledge of its content, i open directly to a page title "The End". "A man in the habit of living in the present, as animals do, he now looked up at the sky and reflected that the red rin around the moon was a sign of rain." today was my final day of radiation treatment. it has been amazing how fast time has gone by. to has also been particularly intriguing how many connections i have continued to discover between my past art work and my recent situation. i found this image i had shot of my self-portrait clay head deconstructed; produced last fall. upon reviewing this image, i immediately noticed the crack located on the right side of the image above the ear traveling in an arch shape towards the temple. although i recently had a shunt put in on the left side of my head, the travel of my scar is almost identical to the one seen here on my clay head. let's recap: this image was taken back in my 2010 fall semester. my brain tumor was discovered late april of this year 2011. my shunt was put in a few weeks ago, leaving a scar just as the image shows. perhaps i knew a second diagnosis was coming before it did, or perhaps it is yet a mere coincidence. maybe there are no conclusions, only terms of acceptance. i look forward to a lack of radiation in the coming weeks.-nicki
20. july twenty-first two thousand and eleven. 7:07 pm
last two days
tomorrow is my second to last day of radiation treatment. crazy how fast time seems to fly by. fingers crossed it did what it was supposed to do. i have come across many people with kind hearts. those who facilitate my radiation treatments, the doctors whom surround me, the secretaries, the patients, the friends, the people. i am learning more and more that life is a lot, if not all, about connecting with the people around you. it is those around us that help us shape who we are and want to be. it is incredibly important to recognize the power and influence we as humans have over each other on a day to day basis. it is important to recognize these weights and pulls we have on each other and use this power in productive ways. it doesn't take much to connect with a stranger placed in the same situation. there is a common shared knowledge that goes unspoken but not unnoticed. who knows where their tumors live or die. we are human and that is the final connection. i sat alone at my kitchen table and drank a glass of water. an extremely small almost translucent spider suspended from the lamp above my head. i watched it as it slowly moved downward in mid air. i moved my hand underneath its path and it shot quickly back up its web toward the light. i have been thinking about this moment for days now. this small act may have likely gone unnoticed if i didn't allow myself to be still. we all scurry to the light when along our travels we find fear or darkness. i continued to watch this spider as it suspended from the light; scurrying up and down. this is what life is about. its about a travel. no matter how uncomfortable it may be, the light is always attainable.-nicki
19. july seventeenth two thousand and eleven. 12:36 pm
the oddity of deliciousness
so lately i am feeling a lot stronger and happier that i am off most of the mood altering meds. the one thing that i have noticed after they had to put in the shunt in my head is my food cravings for the most random food products. i always ate pretty healthy as a kid but i did have my fair share of all american supermarket products. and well these are exactly and only what i want to eat. eggos, fruit-loops, chips-ahoy, wendy's, oreos, lasagna, popcorn, the list goes on. i am fascinated by these cravings myself. its almost like my body is backtracking to elementary school and rediscovering the joy of manufactured food. what is even weirder is that it is often that once i satisfy the craving i never want to look at the food again. i remember when i was thirteen going through osteosarcoma i was a twig of 80 lbs that needed to gain wait and wouldn't eat anything but my temporary cravings. there was this one instance where i was being heavily medicated for whatever medical reason and i had told my father i wanted an entire bologna hero. being the amazing father he is he brought me a bologna hero, i ate the entire thing after not eating full meals for weeks and then proceeded to take a nap after my inhale. i woke up form my nap with the taste of the hero in my mouth. i had no idea what the taste was from because i had no recollection of eating the hero at all. it is INSANE what power drugs have and it is also incredibly freaky. its funny how much i am recalling from my teenage battle with bone caner now that i am older and going through brain cancer (so much fun i swear). who ever thought seven (lucky) years later i'd be back eating fruit-loops and popping chemo pills. it is super interesting to look at my food patterns or disjoints and how my body works differently under the direction of all the medication i take. its actually incredibly interesting and weird to monitor. i guess it keeps life interesting. so go eat some jelly cookies and be merry. life is too short to ditch the good stuff.-nicki
18. july twelfth two thousand and eleven. 6:36 pm
incredible what meds can do
i've finally been weened off of decadron, which is an anti-seizure medication, taken for precautionary reasons after particular brain surgery or brain cancer treatment. the medication works wicked through my body. i have to say it has been me in my darkest days. i have never found myself to be someone to fall or dwell upon darkness. i've always seen color. so when i infiltrate my system with meds that work with traits of their own i feel like a complete stranger to myself. this experience is probably the most frustrating of them all- not recognizing your traits, your emotions, or your thoughts. i don't like to read the side effects you see because then i truly become them all in recognition of their activity. the list of effects is certainly longer than the purpose of the drug. its an intense and critical thing, dealing with drugs out of necessity. the summer is shrinking. i hope more answers or conclusions can be found by fall. i just realized i didn't type my name the last two times i wrote here; just goes to show you how a chemical can effect just about all of ones clear recognition of the self.-nicki
17. july tenth two thousand and eleven. 11:25 am
another summer day
i think a lot, a lot. i question time. i question purpose. i wonder of reason. time has been blurring along with the lines of pain. i can't say i've seen all my scars for what they are yet. i can't say i've realized anything at all. i am simply left with questions. these questions cannot be answered i suppose and that is where my complete indifference comes in.
16. july seventh two thousand and eleven. 1:57 pm
continuity was always a word i liked but never fully experienced and that is okay
its a weird feeling waking up with new scares. time is moving and i have thoughts that sludge from day to day. ideas that quickly come and quickly go. names and faces i remember and forget. purpose is a hard thing to find sometimes. reason and understanding blur and intertwine. i guess all we can do here on this earth is be somewhat true to our reason whatever that may be. i guess thats something i do know today.
15. july fifth two thousand and eleven. 11:45 am
happy fourth with fireworks
uh is the feeling in my stomach. uh is the utter feeling towards my life. brain swelled, needed surgery to stop it from doing so. feels like i am back at square one. can i catch a break please world. i can have conversations with 90 pluses about medical issues, experience - this is not something found ideal in my book. i wish i was sitting here happy painting my paintings. don't we all. but life and art and making ignore the bad, the mean and the dirty. i am angry. my dad always told us that we should never go to sleep angry. you have to make sure you like the person you are before you rest your head every night. but thing is i like the person i am i just hate this bodily/brain situation i am in right now. so now what? why? because i keep shorting out? will i get better after being knocked so many times? i am not the negative type and everyone knows me for that but i am angry. being angry doesn't make sitting on this chair any easier. being angry doesn't make surviving any easier but it is part of it and i know it needs to happen. i often wonder about time and how long it will stretch for me. and i hate these thoughts. i want my life back or just a life will do. =nicki
14. june twenty-third two thousand and eleven. 9:48 pm
i am itching to make new work. -nicki
13. june twentieth two thousand and eleven. 3:11 pm
yesterday, father's day, a bishop of the greek orthodox church came to my home. not only was i humbled and completely honored to have such a man visit me i was completely excited to engage in conversation. my greek orthodox faith has been very influential in my life. i recall one of the services leading to easter at the church where Bishop Savva performed the service. i remember when the entire church made loud sounds with pots and pans to shake the earth as he requested as he walked through the pews blessing and throwing the holy leaves of basil. i bowed my head as he past and as i brought it upwards i caught his eye as he threw the leaves upon me. i recall a strong and quick gaze we exchanged. i had been feeling unwell for about two weeks then and in his gaze i felt as though something was going to happen. his tense eyes made me realize that i needed help; that i was in fact ill and in need of attention. i did not get to speak these specific words to him over our visit but remembered as soon as he left my home. it was as if the memories flushed back as he stepped out my front door. during our visit i had showed some of my previous art work while discussing Basquiat, Warhol and some of our favorite art pieces. he discussed his trips to Africa as i listened with complete interest and joy. i discussed my art work with the bishop and he read my work in new ways i have never been exposed to. he opened me up to new interpretation and awareness. i feel incredibly blessed to have been sitting right next to such a man with such knowledge and spirit. he understood my visions, my thoughts and ideas. it was entirely refreshing to receive such positive influence and outlook. strengthening my soul and heart for life is the very thing i thank Bishop Savva for. i think of all those who have impacted my life. i think of all those who have inspired me in different ways. i never take for granted such moments as the one i experienced with another human being like yesterday. these connections i have been exploring and learning of, keep me positive on purpose and reason. i thank Bishop Savva for his presence and word in my life. the day is new again and i must continue on stronger than ever before. -nicki
12. june seventeenth two thousand and eleven. 8:04 pm
validation from a natural world
i looked down at my sister's boots i borrowed and i see them sprinkled with water from the rain storm. i untied them and walk into the room. the lighting from the wet window is still and subtle. the drops are not as heavy as before. a feeling of complete silence is constantly interrupted buy the thunder. i count and wait to see a bolt near by. but i cannot see any violent flashes. perhaps an awakening sunset. it is grey but has slowly become illuminated. the rain still falls into the flood upon the street. the drops are slower now. creating spirals of movement; almost dancing along with an unknown fate of the clouds above. a bird flies by quickly. everything but the rain seems completely still. the leaves only move to allow water to fall toward the earth. i see hints of orange and royal blue amongst the grey. to feel the world that is real i must breathe. in all its stillness. in all its reason. i do not hate what has happened to me. i feel as the wooden pole directly adjacent to my window. i have been rained on. i have been battered by the elements, by fate. yet i still stand with my connections and reasons outstretched like wires. i breathe. birds chirp validation. -nicki
11. june fourteenth two thousand and eleven. 9:56 am
i have been realizing beauty in simple things. sometimes i am reevaluating places as if they were completely new- but have actually been part of my life since birth. it is refreshing to take time for a spacial awareness. an awareness of your reactions and the world's reactions to you. sometimes i have thoughts that come quickly to my mind as if they will quickly leave if not caught. i scroll through my 'text messages' and i have several dozen or so drafts of messages sent to no one but lay somewhat dormant on my phone. whenever i reread them i question how they ever came about. this stream of consciousness has been constant with this entire experience. i question functions of the brain and how these fast individual thoughts come to be. because of all of this recent experience i feel i have aged. 'the more you know the less you know' they say. this world has become more and more of a mystery and more and more of an intrigue as these moments of question and experience come my way. however it is these moments of complete mystery that may point to my personal freedom. i have come to terms with my situation and the simple way to rationalize it all is to believe it as the way it was always going to be for me as a human on this earth. defining things as fair or unfair seems petty for me after a while because all humans undergo some sort of suffrage. perhaps some more than other. perhaps some more physically oriented than others. perhaps some more mentally oriented. the variations are tremendous and i have grown to respect that. in any sickness one cannot consider themselves as any form damned. we can all be liberated if we have the power to control our thoughts, our mind, and our perception. perhaps some may call this impossible. that we are the way we are because that's how we were born. well i believe those facing cancer and other serious sicknesses see a bit of a light into the reasons and purpose for living. as if there is exposure to a true reason. i just hope everyone enjoys the life they have been given and is open to see the intrigue in every action, every motion, and emotion. this world is a complex thing we may never fully understand in regards to our personal positions. but what one can gravitate toward is a beauty that has always been; a hidden personal reason that we all may search for. open your eyes to the world around you. see it for what it is. appreciate every day you are given. -nicki
10. june tenth two thousand and eleven. 6:18 pm
one week down. it is what it is.
i always see these random statistics. one out of three people suffer from cancer. oh 'suffer'. what a word to used to discuss a third of the world's population. yeah, cancer is no joke but at the same time the world does not have to describe and advertise cancer as the end all be all. after one week of treatment i am feeling good. i believe the spirit of each individual in how they receive such treatment and experience it all, is crucial. taking a positive outlook on any experience is important. if i were to convince myself entirely that "i am a cancer patient", "i am sick", "it will be really rough", then i will never get to breath in the positive side of living with this situation. yeah, there are days that everyone needs to cry and let out frustration but once thats over its time to be productive. productive physically and mentally. it is time to truly live the life given. i never thought my life would travel in this direction. it really does make me think this was my destiny. i don't think cancer should be such a damn scary word. if one out of three people have it lets start getting used to its existence. lets start thinking about prevention and treatment as a commonality instead of a potential death sentence. we are all on this earth for whatever reason. whatever will consume our bodies must have its own right of being as well. its just finding out who is stronger at the end of the day. me ( with them meds, chemo, radiation) or my brain tumor. who will win? but then in this idea of battle i think more of an understanding between the two; like a conversation had between my body and my brain. the two need to respect each other subconsciously and biologically while filtering through my conscious activity. without modern science who knows where i would be. knowledge is something i am grateful for. i often think why these tumors have returned to try to exterminate me once again. perhaps i am capable of something i am not allowed to be by some greater forces(that would be cool to call true). maybe i am an unknown's experiment in another world. trying to find reasons for situations such as mine brings my thoughts to float and travel, to wander and meander. reasons sound ridiculous when trying to substantiate a diagnosis or double diagnosis of mine. all i need to do is remain myself. remain positive and productive. remain living a life that is in sync with my physical and mental being. every night i have thoughts; every day i have thoughts... beginning and ending with questions of "why".-nicki
9. june seventh two thousand and eleven. 9:58 am
one day down. lazier beams (+ chemo pills) have begun
yesterday was my first radiation treatment. a lot different then any chemotherapy. lay on the table, the mask locks in over my head, the men disappear and then the radiation begins for about two minutes. my eyes are closed and i notice changes in light from darkness to lime green beams and then to darkness again. the table i lay on vibrates with certain mechanic movement during the process. the first set up was not bad at all compared to other 'simple' scans i've had in the past. i sat up after they unhooked the mask and the skin on my face was imprinted with the grid form the lime green mask. i now take three pills every night as my chemotherapy treatment, then wake up and go into nyc to receive the radiation treatment. i need to remain active and try to psych myself out of any side effects. i usually never want to speed up time; but this month better go real fast. -nicki
8. june fifth two thousand and eleven. 10:32 pm
this is actually happening
4/27/11= brain surgery...five seconds ago= first three chemo tamador pills swallowed. i was getting used to the idea of recovery from the massage procedure done on my head about six weeks ago. i was coming to terms with my diagnosis and have not really felt too much resistance to reality. perhaps because i did not have to completely swallow it until tonight. tomorrow will be my first radiation treatment, paired with the chemo therapy i just ingested a few minutes ago in my kitchen. the surreal reality because even more real with each swallow. its hard to trust the small capsules to save my life. its hard to believe in anything when it seems like there are never concrete answers to the problem, only educated guesses based on previous human occurrence. i have flashbacks of the past month and before. before surgery when this tumor was unknown and a complete mystery, it was a rapid digression of my health; a breakdown essentially of my health effected by the manipulation of an undefined cancerous tumor. then time for surgery and removal of whatever caused such disconnect and ill feelings. the empty hole left after surgery needed to heal. this then lead to a building up/an adaptation to a world once known. it was the strangest thing. my site was building back up from nothing as well as my memory and physicality. the world was emerging from the darkness i had been emerged in. the week i returned home, i sat outside and just looked up. i let my eyes travel through the intensified colors, as i took deep breaths of air like i had never smelt such a yard before. i would catch sight of a bird and follow its path until i became tired with the sighting. this world i have been a part of for twenty years was made completely new. i think of that day i returned home from surgery with my eyes almost always closed. i can see more than i thought i ever would again. its amazing what the body is capable of. it's amazing how i am still able to see, to hear, to read, to remember. i am lucky. i urge everyone to respect their own body. i start radiation tomorrow around five pm. just goes to show you how the whole day was packed to fit in a last minute new appointment. something needs to change in this world of living. it doesn't get more real then the start date. i finished my brain surgery, recovery, project today- a huge crochet blanket. i made today the finish date to the project because i knew treatment would begin to the start of this week. you can tell where the start of the blanket is and where the end is by the consistency of stitching. as i got better physically, so did my crochet job. it is important to me to stay productive and active both physically and mentally, going through cancer or preferably not. there is no need to stop for anyone, anything or any tumor.-nicki
7. june third two thousand and eleven. 6:28 pm
astroglioma? how old are you?
yesterday i got to my now routine biking and then off to the city for another meeting with my new doctor. we spoke to a further extent as to what my radiation treatment plans would be. firm in his jargon, my trust grew for the man that was planning the expulsion of this tumor and another chance for survival. i have always been a fast paced person. being back here on long island has given me the chance to see a world i thought i always knew. everything means more now. at the appointment with my radiation master i got to view the before and after mri scans of my brain. it was awesome. like layers to a layer cake the scans depicted a detailed view of each layer starting with the tops of my eyes and visible bones, leading through the layers of tissue to the multiple layers of muscle through the brain from bottom to top. somewhere on the journey i saw the golfball sized tumor, along with surrounding swelling, before surgery and then the nice lovely, black hole, brain after. sort of kidding about the black whole comment, the area where the tumor once lived in is blackened but should heal in time. astroglioma is a possible diagnosis for the type of cancer fueling the tumor i should probably give a pet name to. The slides are being previewed and reviewed by multiple doctors in several hospitals because of my case's rarity. osteosarcoma and astroglioma. what a lovely pair of long, commonly mispronounced, words to have on my patient resume."normally, no, we do not ask for second opinions on such cases. but considering your past diagnosis and treatment and your young age, it is necessary". says my new physician. so maybe if i were thirty this whole tumor thing would be a bit more normal. osteosarcoma at thirteen and astroglioma at twenty; seven years after? lucky number seven huh? well now thats weird. maybe its all the oil paint i've used over this span of time, or maybe not. perhaps its just what was supposed to happen, this whole brain attack scenario. at least i am building up my medical history portfolio. monday is the start of my 6-7 week radioactive journey and chemo pill popping.-nicki
6. may thirty-first two thousand and eleven. 12:27 pm
"getting to know you, getting to know all about you"
every night i have forced myself to write. to travel wherever my thoughts lead me. it is as if i loose control within them. i remove myself from any fear of judgement or fear of question. there is no editing process besides a rapid or random cross out. whenever this occurs i find myself correcting my thought, learning from the past sentences i have scratched down. there is this unconscious versus conscious way of writing as well as living and understanding the world in which we live. the way my hand moves across the page with such vigor its almost as if i float from word to work, form thought to thought. i write most in darkness. the room's isolation allows my senses to heighten and i feel both in complete control unconsciously and removed from any conscious questioning or doubt. these moments i encounter every night make me further question the activities of the brain. the reasons for these places of separation and connection between a reality in which we are currently placed and an unconscious in which we flow through. the sun finally shines bright and the world has become completely new all over again. i touch the back of my head and the scabs have slowly left my scar. i still do not know this new addition as well as the others. it takes some time to get to know your wounds and especially your self.-nicki
5. may twenty-eighth two thousand and eleven. 8:06 pm
yesterday arriving back to the medical center with decision of treatment plans set me back on track with who i really am. returning home that first week after surgery resulted in thinking thoughts i would normally never throw around. but yesterday i was a lot closer to the person i remembered from before. i completely appreciated my experience friday and all those involved. i was fitted for my radiation procedure head gear. after heating the specific flat sheet of a rubber meets plastic like material they placed it over my face and the sheet melted a mask for me. the mask of the lime green gridded material will lay on my head every time i receive those lazar beams of radiation. the three locations where the beams would travel into my brain were marked with to diminish any cancerous cells. the man and young woman who fitting the mask for magic markers. before they placed the mask i was casually joking with the man was carrying out the task. he has a wholesome laugh and the young woman working with him was swedish, if i remember correctly, and had the kindest eyes. the liked the two of them, as technicians, as people, after throwing around a few jokes with the man with the glasses who was missing a finger. as the mask was placed i did a test run perhaps? or maybe i was just going for a ride for the hell of it. i must saw if anything trained me for this scan it was all those god dam plaster and wax molds i did in the workshop. i would love to get my hands on this mystery mask material and make some amazing art pieces out of it. they took pictures of me while i was in the mask (with my eyes closed) so i could not tell if this was a new addition to the scan or if it was just someone snapping some shots while i looked like i was an alien. believe it or not i had a bit of fun that day. everyone wonders why any of that could be fun. when you are restricted you must seek a certain freedom in that confinement. by accepting the reality i am now gravitating toward making that reality work specifically for me. you would not believe how many patients come in every week to receive radiation. apparently its the thing to do. old, young, men women all kinds of um. i was booking all the dates i would come in to receive the lasers of love and the schedule was endless of unknown names. the actual radiation procedure takes about two minutes, set-up etc. a patient is maybe there for 10-20 min? A lot different than the two week chemo parties i had back in the day. upon making my schedule for the next six-seven or so weeks to receive treatment the man and woman who worked with me showed me the photos they had taken while i was in the machine. i would imagine for filing reasons? of course me being me i asked for a copy of the images in the scan, wearing the mask, on the scan table. best part: i get to keep the mask when i finish all my radiation = awesome.-nicki
4. may twenty-seventh two thousand and eleven. 9:20 am
today i have a meeting for simulation of radiation. i have never done this kind of treatment before. this prep should be interesting. i'll be having to engage in such activity every day for a month straight. maybe i'll get a cool helmet or some interesting dots on my head- to accompany the scar beautifully. i'm getting more badass with all these physical marks. oh and remember this is not a relapse people this is brand spanking new. -nicki
3. may twenty-fourth two thousand and eleven. 4:03 pm
surrounded by uncertainties
i have been to several doctor appointments. i find myself left with feelings of emptiness upon leaving many of them. i am unsure of my future in several ways. physically i am gaining strength and my ability to read is getting faster. i feel like my brain is perhaps slowly returning to its initial state but i often wonder if i am now in a completely new state and there will be a halt of progression at some point. i still have complex thoughts, various ideas and emotions. i find myself a lot happier in general since the first week home from surgery. coming off of all that medication was rough. i was no longer lifted by any formula or mentally elevated to a happier esteem. starring at myself in the mirror, feeling the scar in the back of my head, missing vision at a certain elevation on the right side introduces a completely new way of living. existing has completely altered and the uncertainty of so many as to what actually existed in my head and how it most likely will return if untreated, irks me the most. the uncertainties and lack of immediate definition is what pained me those first few weeks home the most. i wondered how much longer i will have every morning. those thoughts still exist daily but have not controlled my everyday anymore. i could not stomach to research my condition for the past few weeks myself. everyone around me has been reading, researching, finding informative stories about other patients, treatments, doctors, and their discoveries. I think what turns me away from it all is the lack of specificity in anyone else's story. those stories are not mine and no cancer patient is exactly alike. how will the next treatment be catered, altered and made specific to my brain and my body. now that i am more aware and physically better than i have been the past few weeks i am approaching this situation differently. i have more of a clear head than the first week i can home. i would have mornings that i would and could not physically move to wash my body in the bathtub. i was delimitated and completely stripped of any humanity, any complete privacy. i would sit in the tub and wonder how the hell i ended up here. i would wonder what day it was. i did not know what year it was initially i had to ask. it is memories of these moments that i now reflect on and feel even more anxious to prevent any kind of tumor from resurfacing and re-attacking my brain. i just want to fix whatever has been made wrong in my body physically. i reflect on philosophical readings from my last semester and think about how my body is almost a burden in some cases to my mind. my mind has always been strong in my opinion through all of these trying times. but it seems as those my physical body is failing me in terms of internal bone and brain. when will the body and mind exist in harmony for me so i will not be attacked by these combative diseases and i will be free of any fight to live? it is completely interesting fighting to live. i have experienced and learned so much already i am surprised i am destined for whatever reason to undergo such a trial again. i pray everyone lives their life with great appreciation. life is trying for every one person that lives and breathes on this earth. perhaps greater levels of trials for some than others but we are all here in unison. something needs to be communicated between us all that forces us to understand ourselves and each other to a greater extent.-nicki
2. may twentieth two thousand and eleven. 6:41 pm
memories are beginning to return in pieces
i had to check my spine to make sure no other tumors were manifesting in there. let's just not even think that could be a possibility at this moment. the days go so fast for me. my memories of the past three weeks are starting to resurface. today i went approaching hospital locations i've apparently visited before multiple times. my memory had been blurred by all sorts of hard drugs after my intense brain surgery. i would have drug day dreams of these physicians and test administrators. they would become like a part of a fantastical world i was dreaming of. usually you hear about these stories in LSD and acid trips taken by those in the sixties. well hate to break it to you straight shoppers but these drugs are commonly used and almost forced on plenty of patients-including the young ones. i hear stories about different situations in which i yelled at nurses who weren't living up to my standards. normally i am a respectable person. at least i thought so. i treat people kindly even if i don't feel they are doing the best at their job. well these drugs, whatever they were, or whatever combination it was, caused me to act as a new person. it is insane what drugs can do to the body and brain. it makes me think a lot about what it is they put inside my body and what is it that is removed from me because of these discussions. when i was under the influence of multiple medications after my brain surgery i was purely enjoying certain moments depending on the individual that was in charge of my test or me in general. for some reason i really responded to the man who was performing my one scan. i imagined him as originating from a tropical place where the women that existed there swam through exotic waters with me, had long tales, extremely interesting and exotic faces, and held my neck as support while showing me the array of exotic children they had who lay on the moist moss and store at me as i closed my eyes. i had dreams of myself showcases in a gallery amazing works of art i could not remember creating. when i woke up i convinced myself i had made these pieces because i thought of them in the first place in my drugged dream. amongst all this pain and suffering i found complete happiness in the complete oddity and abstraction of my dreams and thoughts produced. i wasn't sure if my mind finally felt free because the 99.9 percent of the tumor was removed from my brain or i was simply high off of the mass of drugs. maybe it was a combination of both. it is quite funny because after writing that first story and posting it here and exposing it to the world i begin to find reason to this all. at first i really did experience a dark depression. once all of those drugs wore off i was left in a weak state that i found worthless at the time. it slightly reminds me of the pain when i was thirteen but i never felt so dilapidated, so broken, so ruined. my life was going amazing and i was becoming the person i always dreamed to be. at first i believed cancer was ruining my life again and i was almost ready to give up this time and say okay you win. but not any more. after today repeating everything completely sober from any medical medication, i became more knowledgeable about what happened the past three weeks to me. i became more knowledgeable about my own situation. everyday i learn something about what happened in the last three weeks. its almost as if i am relearning to live again. i am somewhat happy -finally- after all these weeks. of course i have a lot to battle in the future but i have a better head now in my opinion. the tumor is out so now i need to prevent another one from coming and ruining it all again. i do need to learn how to read better and edit these writings better. things take time. i like to do a lot you see. and i know this sickness will not ruin me in that way. it may alter me in different ways but if my brain hangs in there i will overpower anything with my powers to think. memory is an interesting thing. if anything remains in your thoughts-address it. there must be a reason it remains within you. confront such thoughts, such emotions-it is necessary. this is why i can never throw people away. because i care completely about everyone who has entered my life.-nicki
1. may sixteenth two thousand and eleven. 12:26 pm
recently everything has changed
it has been about six years since i was last diagnosed with bone cancer in my right humerus. i return to the hospitals and treatments i once left again at the age of thirteen now at the age of twenty. why is a question i ask myself every morning i wake up exhausted from the brain surgery that was done on me three weeks ago while i was in the middle of preparing my final projects and art pieces in the city. its quite strange because i never knew this was possible. i never knew i could be diagnosed again with a completely new form of cancer in a completely new location on my body. i never thought i could loose my ability to eat, to read, to understand any form of text on my computer. i never knew all my dreams and plans for the upcoming season and year would be completely shattered by another illness begging in my brain god knows when. i knew something was beginning to be not right last semester when i underwent great unhappiness in my personal life. i seemed to battle those feelings of sadness in the winter. i cried on my twentieth birthday last year and maybe it was a sign towards this moment i now experience. i've always been a happy person. this birthday i was not. i got an email from a museum in nyc about the internship i so desired the week i underwent surgery on my brain. i had just booked an apartment in nyc to live in all summer. i am now back on long island in my childhood home feeling completely displaced from a location i so desire to live. its been three weeks since my surgery in which the surgeon removed my cancerous tumor which was quite large in the left side of my brain. it is unknown when the tumor started growth. i wonder about the reasons why cancer struck me for a second time when my life was heading somewhere important. i wonder why i could not read words before and after the surgery. i wonder why the tumor altered my life so dramatically and my family, friends, everyone i've ever known must digest my experience as new or all over again. i think about the grandfather i never knew that i just produced a piece for in a new gallery in brooklyn started by fellow fine arts students. that was the last fully completed and displayed piece of art i showed. it must mean something that i found and produced such an image so in relationship to me. he died of cancer before i was born. when i found such a photograph i was intrigued by it intensely. as if my late grandfather was trying to say something through such an old image. his eyes moved me and alerted me instantly. along with this photograph i produced work all about my battle with cancer. my sculpture class provoked me to address issues i previously faced as a battler of bone cancer. little did i know such interest in that time in my life was really a prediction of what was about to come. my mother wondered why i was exploring interest in my past cancer situation and memorabilia. perhaps she felt a strange emotion toward a future happening involving or surrounding cancer. i was supposed to be fine you see. i was supposed to be clear of cancer after the sixth year. they say one you pass five years everything most likely will not return. hence i will have less of a chance or relapse. well whoever made that up has been seriously proved wrong. i am confused you see about everything that has happened and i am angry at the pause or corruption of my amazing life i started in new york city. i am unsure who is aware of what. it has taken me a while to learn how to read, write, understand, or gain any reality of what is actually truthfully happening to me. i felt horrible toward the end of the semester. i did not enjoy going out anymore. i didn't enjoy much because things were not right with me. my brain was no longer in a good place. i was sick. and i had no idea of what or why or how. i made plans to travel to california with my good friends. but after booking the trip i had a strange feeling i would not be able to take part of it. i think about all the art and how its as if unconsciously i knew what was going on with my body. i've always considered myself a happy and kind person- this semester did not expose me as such to all. i was easily irritated and let down by the ways and those of the city. perhaps this was my tumor attacking my emotions, my interpretations, or not. i do know i was not myself, whoever that is anymore, this past year entirely. the two weeks before the discovery of the brain tumor i would have episodes where i would feel as though i was intoxicated with some sort of block in my head. i would write papers fast and believe them to be my worst. i would receive these papers back and receive excellent grades in confusion. i would analyze the art pieces of others better and quicker than i ever have before. i would misunderstand people at times or feel completely distracted by mental thoughts. i was unwell but did not want to acknowledge it. i was unhappy with my healthy but did not realize that was the root of the cause. my last sculpture piece for my final was going to involve me sitting in a constructed wood and glass made box that i would sit in covered in black liquid as it seeped slowly out of the box that was enclosed with small holes drilled in and i would sit inside covered in this black liquid or paint. i would sit in the box naked but drenched in this fluid. the viewers would enter the room with an instruction to place on a face mask drenched in purell germ remover. there would then enter the room with the face mask on which would be intense in smell and almost cause complete leave of the space because of its intensity. there would be high pitched sounds of my neck cracking (these sounds would have been pre-recorded from my own neck and muscles cracking previously) the sound would be so incredibly loud it would be bothersome to each viewer. i would place hand made tumors all around my body in the box that the paint would drain toward. this was my last project idea before reviews. i never got to do this piece. the plans for the box construction lie in my last sketchbook that reviews such odd work that relates to my tormented brain. my last painting for oil painting class is one of the cleanest pieces i've made. very simple and disturbing. i now review all my work and i wonder why i never thought consciously about having another cancerous problem involving a tumor in my brain. my life is a mysterious situation. i wake in the morning and wonder how the hell i returned here and how the hell so much weight has left my body and how so much time has passed by. its been almost three weeks since this all occurred and i still have issues believing i'm in this position. for a second time in my young life. i look at all my work that i produced over the semester and i find connections to what occurs right now in my life. i don't really know how to end this message i release on this website. i don't expect anyone to understand. i don't expect anyone to say anything. this has been a battle i have already faced, dealing with cancer. having to survive it when everyone i met along the way who joined me in a fight died too. i meet so many girls that i think of daily who have left me as the only living survivor. will i be able to keep that title? will i be able to remain on this earth for a long time? i've been thinking a lot. others have been praying a lot. i'll never know my response to all these treatments. ill never fulling know an outcome until, if, i reach that point. i don't want much sympathy either. that won't help me. i just want to be treated as the human being i hope to continue to be. i just want to get better. i just want to be able to read fast again. to figure out how to deal with this new vision limitation asap. just live your life to the fullest please. i am lucky to still be alive. i am lucky to have the family i do. pay attention to your own feelings. pay attention to your life. and to those of others you care for. i have realized the lack of control each individual has over their own life, especially medically. but i have come to realize the power of each individual. the strength each individual can have and activate in their life. -nicki