I'm sure many of my blog readers have been wondering why I haven't posted any new blogs in over a month. It is because I was busy focusing my energy of finishing my autobiography. It is a project I started shortly after my accident, but kept hitting mental roadblocks and perpetually procrastinated on getting it done.
One of the biggest obstacles was my physical limitations and not being patient enough to work with dictation software. When I still lived at Cheshire I was limited to pecking away on my keyboard with my mouth-stick. I was a lighting fast typer when I could use my hands (never had to look at the keys) and can type surprising fast with my mouth-stick. The task just became tedious. A couple of the other residents highly recommended I buy the dictation software, "Dragon Naturally Speaking" and many of them used it regularly. I felt foolish speaking to the computer, and hated the fact I never had privacy and would have inevitably be overheard by roommates. At that point I decided against wasting the money, and kept on pecking away at the project.
For whatever reason, I only ever seemed to get the first thirty or so pages written. I kept hitting mental roadblocks whenever I tried recalling my time at Kessler. Honestly, I think I was so stressed out by the immediate issues, of being sleep deprived, stuck in a nursing home and dealing with the high stress level of each day, that I couldn't delve into the haunting memories and difficult experiences of my stay at Kessler. If anything, I wanted to run far away from those memories and much preferred to escape my miserable reality, through reading books, watching anime, spending time with friends and vegging out on video games.
After a while, I just stopped trying. I put the project on the back burner and focused my writing on current, day to day things. I used my MySpace blog as an outlet to vent my daily frustrations and every day struggles. When things became unbearable, and I hit my breaking point I switched gears and focused all my time and energy on getting myself out of Cheshire and into my own place. It took six long months of relentless researching, planning, pleading and begging, but I did it.
Once I was home I tried a few times to pick the book project up again, but would constantly spend all my time re-reading and re-editing; never making progress. I started focusing a lot of energy into painting, instead of writing and worked hard to build up a body of work worth exhibiting. I wrote about my artwork, as the book started to collect virtual dust, again. I was limited to the time I was able to be up in my chair, so I had to prioritize how best to spend that time, since it was when I could be most productive. I made the choice to paint and remained focused on that.
The book was always lingering in the back of mind. It bothered me, having it unresolved and unfinished. It wasn't like me to give up on anything I started. I caved in and bought the Dragon dictation software, hoping I could use it to be productive during my time in bed. I figured instead of playing my Nintendo DS, reading, or watching TV, I could begin putting my thoughts down and use my evening hours to write. I still felt silly speaking to the computer, but felt a little better knowing at least I had privacy. The software was glitchy and I didn't have the patience to do the training exercises. It ended up being more irksome than handy, and yet again I abandoned the project.
This past April my ex-boyfriend Jimmy resurfaced into my life. He knew I was struggling, and was at my wits end, with everything. He wanted to know how he could help me. I instantly knew that THIS was my opportunity to dust off my book file, and tackle the project once and for all. He was happy with the idea and we decided to begin working on it right away. I just knew that having HIM help me, would give me the accountability of meeting deadlines and the fact that it was OUR project gave me the focus and motivation I needed. I felt like deep inside there was so much I wanted to say, so much I wanted to share. I believed my story has the potential to help others and I felt like it would give Jimmy and I some much needed closure and mutual understanding. Although he'd remained in and out of my life over the last six years, there was a lot of things he missed out on. Out of all the people in my life, it was important to me that he understands my WHOLE experience with paralysis; from start to finish. I wanted him to understand my suffering and hope that having completed the project together it will put everything into perspective for him, and for us.
At first it was really challenging, just laying out the structure for the book and putting together a game plan. It had been so long since I had really thought about the dark days of Kessler and my time at Cheshire. I knew writing the book would open up a lot of old scars, but I felt ready and able to handle it. Luckily, for a large majority of my time post accident, I have kept blogs, or journals. I was grateful to have those entries to use as a reference, to try and create outlines of what I wanted to say in each chapter, and to put everything in chronological order, and to attempt to maintain a coherent flow, without too much repetition. If my memories were fuzzy, or I had gaps in my records I turned to family and friends to double check my facts, and to piece it all together.
Jimmy would come down to NJ (from PA) about once a week, or every other week and he would help me type huge chunks of chapters. I tried my best to write a little every day. Having my iPad was a tremendous help. As my health had declined, further and further my time sitting up has progressively decreased. Thankfully, I can write on my iPad laying flat in bed. It allowed me to keep up a fast momentum. Every so often, throughout the day or night I would write a few paragraphs. I tried to save the emotional parts about my relationship as my own personal project and forced myself to get those parts finished, between our visits.
The first third of the book was emotionally the hardest, but having Jimmy's support helped me stay focused and kept me on task. The last third of the book was the easiest part to write, because it focuses on the most current events in my life and my present day thoughts, opinions and struggles. I ended up writing middle portion of the book last, since I had the least amount of reference material to go off of. It took me a while, to interview friends and family and get the outlines finished. Once the outlines were completed, I just worked on checking off each topic from each list, until it was finished.
That said, from start to finish, it took me the past four and a half months of intensive writing to get the entire story down on paper. It's twenty one chapters long and over 250 pages. It was a monumental task, but I did it. I couldn't have done it without Jimmy and am eternally grateful for his assistance, in helping me realize my goal. The hardest part is over. I've said everything I want to say, and truly believe that he and I were meant to do this project together. For so long, we've both struggled over trying to make sense over why we met, and had such a wonderful, loving relationship, only to see our dreams get shattered and torn apart. This is not the life either of us wanted, or planned, but this book is something that we were able to turn our pain and tragedy into something good, and helpful; that hopefully will benefit others and inspire people to support research and change their perspectives on life and death. It will be our legacy and something that can continue to help, and inspire others to enact change, even once we're long gone. That feels good.
Right now I've been working with a couple of editors and trying to determine how much it will cost to get the book professionally edited. I've gotten some great feedback, but it's going to take a substantial (between $2,000-5,000) amount of money to get the job done right. I'm waiting to hear back from lawyer, to see if this is something I can use my trust for. We shall see. Honestly, I think it should be permissible, because it's definitely an expense that will go towards improving the quality of my life and hopefully that of many others. Once I get the editing logistics/fees ironed out and the book is edited and ready for publication, I plan to use lulu.com to covert the book into e-book (aka paperless) format. Once it's published it will be available to purchase through Apple's iBook app (on iPad), through Barnes and Noble's Nook and Nook Color and hopefully through Amazon's Kindle.
I'm super stressed, waiting to hear back from both editors with quotes and timelines. I'm even more stressed at how much it might cost me. I'm anxiously awaiting my lawyers input (and hopefully his approval). As soon as I have those answers, I'll know what is the best way to proceed. Either way, I have faith it WILL get published soon (within the next few months at the latest). I'm thrilled about it and can't wait to share my story (my WHOLE story) with the world. I look forward to hearing reader feedback! I'll keep everyone up to date on the progress and definitely inform you all once it's actually for sale. I'm so close, and very proud of myself. I hope readers will enjoy it, and that it will open some hearts and minds.
- Posted using BlogPress from my iPad
Showing posts with label disabled artist. Show all posts
Showing posts with label disabled artist. Show all posts
Tuesday, September 13, 2011
Monday, September 12, 2011
"Schwartz Center Rounds Annual Dinner"
I'm happy to announce that fifteen of my paintings are going to be on display (October 3, 2011) at Overlook Medical Center, as part of their "Schwartz Center RoundsAnnual Dinner." The event facilitator, Jeanne is a friend of mine. She and I met online about six months (through my many searches about palliative care and hospice). She is the "Ethics & Palliative Care Program Coordinator" at Overlook Hospital (here in NJ). I had contacted her, asking about patient's rights and shared a brief history about my accident, and my struggles. It turned out that she and I shared a mutual acquaintance (from Kessler). We shared email correspondences over a period of several months, and she was very moved by my blogs and artwork. Before long we became friends. She has been very supportive, and caring.
She came to visit me a couple of months ago, and we discussed the possibility of displaying some of my artwork at the hospital. She explained that she worked very closely with doctors, nurses and other medical professionals and thought that the medical community at her hospital could benefit from seeing my paintings and reading my writing. She said that part of her job entailed helping new doctors and nurses learn to be more compassionate and empathetic to patient's needs. I agreed, and was happy for the opportunity. I have often felt frustrated by the lack of help that medical science has been able to offer me, and upset by the treatments and lifestyle that I'm forced to endure because of my injury. I do believe my artwork could potentially help medical professionals better understand what it is like to live paralysis, and to suffer with chronic pain and illness. It has always been my hope, that by sharing my writing and my artwork that I would educate others and open people's hearts and minds.
I truly believe in order for a cure to paralysis being found, more people must understand how horribly and profoundly it can change a person's life and how difficult it can be to live with it, everyday. I have also come to believe strongly in patient's having the right to advocate for themselves and to have the right to die with dignity (when medical science can not offer a cure or relief to severely debilitating or incurable illness/conditions). I think it is important for medical professionals to do everything within their means to give patients the highest quality of life they possibly can, to listen to what their patients are saying and to alleviate suffering whenever possible.
I think it is crucial for the medical community and society at large, to recognize that some conditions are worse than death, and when/if a patient is mentally competent to asses his/her own situation, that he/she alone should be able to determine what lengths he/she is willing to go through to preserve his/her own life and those wishes should be respected. In many ways, I feel our society is more "humane" to our pets than we are to millions of people that are essentially forced into suffering, because there is no cure, or treatment available to alleviate their pain. Not everyone with an incurable, terminal, debilitating disease or injury would choose death, over life. However, I believe there ought to be a quick, peaceful alternative available to those who want it. I hope my artwork and my writing will inspire change.
I think this dinner at Overlook hospital is another small step in my journey to open hearts and minds towards suffering, quality of life and death. I really hope my works hits a soft spot and sinks in, for all the medical professionals that attend. I hope it makes an impact.The dinner itself is an annual event, and has an interesting history. I feel honored to be included in the tradition. I asked Jeanne to tell me a little bit about the purpose of the dinners and about their collective history. This is what she sent me:
"Schwartz Center Rounds were started by Kenneth B. Schwartz, a health care attorney from Boston, who died from lung cancer at a young age. He wanted to leave a legacy of support for professional healthcare workers to enhance and replenish their abilities to provide compassionate care for patients and families. He recognized that some of the most important work of healthcare professionals is to deliver compassion to their patients (hand holding, listening, laughing, combing hair, etc.).
The purpose of the monthly Rounds are to provide a forum and “level playing field” where caregivers from diverse disciplines (doctors, nurses, social workers, chaplains, dietary workers, etc.) discuss difficult emotional and social issues that arise in caring for patients. It is a forum to explore the human and emotional side of clinical medicine ---but with the focus on the patient-caregiver relationship rather than solely on the patient’s medical situation. Even though doctors and nurses cannot cure many conditions/diseases, they can still relate to one another and to patients and families in a way that provides hope, support and sustenance to the healing process.
We have these Rounds monthly and usually present a case that was difficult or emotional in some way. We often shed tears. Once a year, we hold a special “Rounds” where we invite a patient or family member to share their views about the experience they had. As you can see, your artwork and story will be a very powerful topic for discussion and expression of feelings from all.
Your paintings and your voice will carry your story to the hearts of each of those who come and will strengthen their ability to reflect on the suffering of all patients."
Good stuff :) I'm excited to hear the feedback!
- Posted using BlogPress from my iPad
She came to visit me a couple of months ago, and we discussed the possibility of displaying some of my artwork at the hospital. She explained that she worked very closely with doctors, nurses and other medical professionals and thought that the medical community at her hospital could benefit from seeing my paintings and reading my writing. She said that part of her job entailed helping new doctors and nurses learn to be more compassionate and empathetic to patient's needs. I agreed, and was happy for the opportunity. I have often felt frustrated by the lack of help that medical science has been able to offer me, and upset by the treatments and lifestyle that I'm forced to endure because of my injury. I do believe my artwork could potentially help medical professionals better understand what it is like to live paralysis, and to suffer with chronic pain and illness. It has always been my hope, that by sharing my writing and my artwork that I would educate others and open people's hearts and minds.
I truly believe in order for a cure to paralysis being found, more people must understand how horribly and profoundly it can change a person's life and how difficult it can be to live with it, everyday. I have also come to believe strongly in patient's having the right to advocate for themselves and to have the right to die with dignity (when medical science can not offer a cure or relief to severely debilitating or incurable illness/conditions). I think it is important for medical professionals to do everything within their means to give patients the highest quality of life they possibly can, to listen to what their patients are saying and to alleviate suffering whenever possible.
I think it is crucial for the medical community and society at large, to recognize that some conditions are worse than death, and when/if a patient is mentally competent to asses his/her own situation, that he/she alone should be able to determine what lengths he/she is willing to go through to preserve his/her own life and those wishes should be respected. In many ways, I feel our society is more "humane" to our pets than we are to millions of people that are essentially forced into suffering, because there is no cure, or treatment available to alleviate their pain. Not everyone with an incurable, terminal, debilitating disease or injury would choose death, over life. However, I believe there ought to be a quick, peaceful alternative available to those who want it. I hope my artwork and my writing will inspire change.
I think this dinner at Overlook hospital is another small step in my journey to open hearts and minds towards suffering, quality of life and death. I really hope my works hits a soft spot and sinks in, for all the medical professionals that attend. I hope it makes an impact.The dinner itself is an annual event, and has an interesting history. I feel honored to be included in the tradition. I asked Jeanne to tell me a little bit about the purpose of the dinners and about their collective history. This is what she sent me:
"Schwartz Center Rounds were started by Kenneth B. Schwartz, a health care attorney from Boston, who died from lung cancer at a young age. He wanted to leave a legacy of support for professional healthcare workers to enhance and replenish their abilities to provide compassionate care for patients and families. He recognized that some of the most important work of healthcare professionals is to deliver compassion to their patients (hand holding, listening, laughing, combing hair, etc.).
The purpose of the monthly Rounds are to provide a forum and “level playing field” where caregivers from diverse disciplines (doctors, nurses, social workers, chaplains, dietary workers, etc.) discuss difficult emotional and social issues that arise in caring for patients. It is a forum to explore the human and emotional side of clinical medicine ---but with the focus on the patient-caregiver relationship rather than solely on the patient’s medical situation. Even though doctors and nurses cannot cure many conditions/diseases, they can still relate to one another and to patients and families in a way that provides hope, support and sustenance to the healing process.
We have these Rounds monthly and usually present a case that was difficult or emotional in some way. We often shed tears. Once a year, we hold a special “Rounds” where we invite a patient or family member to share their views about the experience they had. As you can see, your artwork and story will be a very powerful topic for discussion and expression of feelings from all.
Your paintings and your voice will carry your story to the hearts of each of those who come and will strengthen their ability to reflect on the suffering of all patients."
Good stuff :) I'm excited to hear the feedback!
- Posted using BlogPress from my iPad
Tuesday, July 26, 2011
Sketchbook Is Finally Digitized & Online!
Last year I entered an Art House Co-Op project, called "Sketchbook Project: 2011." Each artist was asked to choose a theme from a list of predesignated themes (I chose "Help!") and sent a 80 page sketchbook. The only requirements were to fill the sketchbook according to the theme you chose & send it back. Each sketchbook was given a barcode for tracking purposes. About 10,000 artists participated & the sketchbooks were taken on a cross country tour, to multiple exhibits, where people from all different states could look through them. Once the tour was concluded, the books were all brought back to the Brooklyn Art Library and some were digitized (if you chose to pay the additional fee) as part of Art House Co-op's digital library.
Since I do all my artwork by mouth, it was much easier for me to create the sketches/artwork for my sketchbook on my iPad & print them out. I created a description page and image for each two page layout. The book is now digitized and available for viewing through my Art House Co-op profile, or directly through this link (www.arthousecoop.com/library/4604).
It took me months to fill the book. Unlike painting, I can work on my digital artwork in bed. Since I haven't been well enough to get up & paint as often as I'd like (these last couple of years) my iPad has given me a new outlet for artistic expression. I thought this project would be a great way to help raise awareness about paralysis & spinal cord injuries. The theme "Help!" fit in perfectly with my intent to ask people to help me (and the millions of people suffering with paralysis world wide) by supporting research for a cure to paralysis. All the sketches, digital images & collages I included in my sketchbook are about my struggles with my accident, my injury and my life with paralysis.
I'm pleased with how the book turned out (with the exception of the first two page layout- my collage was pasted upside down by mistake). I'm hoping that now it is available online for viewing it will get a lot hits, and get people thinking about paralysis & spinal cord injuries. They say a picture is worth a thousand words, so I hope my artwork has an impact on the people that see it. I want to open people's eyes, educate the general public & hopefully inspire some people to support research & advocate for a cure. I'd love to hear feedback & please share the link with friends! Thanks <3
- Posted using BlogPress from my iPad
Since I do all my artwork by mouth, it was much easier for me to create the sketches/artwork for my sketchbook on my iPad & print them out. I created a description page and image for each two page layout. The book is now digitized and available for viewing through my Art House Co-op profile, or directly through this link (www.arthousecoop.com/library/4604).
It took me months to fill the book. Unlike painting, I can work on my digital artwork in bed. Since I haven't been well enough to get up & paint as often as I'd like (these last couple of years) my iPad has given me a new outlet for artistic expression. I thought this project would be a great way to help raise awareness about paralysis & spinal cord injuries. The theme "Help!" fit in perfectly with my intent to ask people to help me (and the millions of people suffering with paralysis world wide) by supporting research for a cure to paralysis. All the sketches, digital images & collages I included in my sketchbook are about my struggles with my accident, my injury and my life with paralysis.
I'm pleased with how the book turned out (with the exception of the first two page layout- my collage was pasted upside down by mistake). I'm hoping that now it is available online for viewing it will get a lot hits, and get people thinking about paralysis & spinal cord injuries. They say a picture is worth a thousand words, so I hope my artwork has an impact on the people that see it. I want to open people's eyes, educate the general public & hopefully inspire some people to support research & advocate for a cure. I'd love to hear feedback & please share the link with friends! Thanks <3
- Posted using BlogPress from my iPad
Monday, May 9, 2011
Meeting With Fr. Doug
Well, I just met with Fr. Doug. He was very nice, and younger than I imagined. Most of the priests I knew growing up, were easily old enough to be my grandfather, or great great grandfather. We talked for about an hour and a half. I explained pretty much everything I've been thinking, and going through; lots and lots of tears. I showed him some of my still life paintings, I had laying around the apartment and gave him my card, to check out my website.
He said he could see a definite reason why God wanted me here, to use my gifts, to help others. I brought up the fact, that I feel I have been generous, and giving, but wonder how long I'm meant to keep living for the sake of others. I said, it's unfair, to hold me to the standard of Jesus, when Jesus had a clear knowledge, of his purpose, about his death, and about his resurrection. He said that's true, but that life isn't always fair. I explained that I don't blame God, for my accident, because I feel it is a product of my own freewill. He agreed, and said, although God doesn't create suffering, he can make good things happen, despite of it.
I understand, that I've been blessed with gifts, despite my severe disabilities. My gifts, of writing, and painting have helped me to cope, and teach others, about paralysis. However, the daily bouts of autonomic dysreflexia, and the grueling treatments, and degrading, embarrassing nature, of being totally dependent, makes living this way, seem so overwhelming, and often overshadows, the few positives in my life. I am thankful, to be able to express my feelings, but sometimes feel like my mind itself, is my own worst enemy. Being so trapped, with nothing but my thoughts, is often a punishment, within itself, because I'm constantly remembering what I had, what I can't have, what I miss, and what I want. The disparity between my old life, and my reality, is constantly weighing down on me, and makes it hard to be satisfied with what I've been left with.
He said I seemed to be much harder on myself, than others, and said I needed to find a way to forgive myself, for the accident. He said I had to start loving myself. I have heard those words many times, but am at a loss, at how to begin to do that. He said we're often much nicer to others, than we are to ourselves, and in my case, that's certainly true. He said God, is also more forgiving than I am, which I'm hoping is true. I know I didn't intend to hurt myself, but it was MY poor judgment, and MY action, that ultimately resulted in my injury. In many ways, I feel like a murder. I feel like the person I was, died that day, and I've been grieving for her, ever since. Paralysis has stolen almost every aspect of my old life; a life a loved.
I have lost my freedom to care for myself, my privacy, my dignity, my hopes, my dreams, my career, and the life I had built for myself. In many, many ways I lost myself. I miss the old Christina. I miss living my old life. I have no to blame, for the life paralysis had given me, but myself. How do you forgive someone that has stolen everything you loved, and held dear? How do you forgive someone that has robbed you of your health, and in turn, sentenced you, to a life a suffering? How do you forgive someone, that has robbed you of your potential, and your dreams, for the future, by placing extreme obstacles, and limitations upon you? I'm not sure if I CAN forgive myself.
Talking with Fr. Doug, did help provide me comfort, in that he said I had the right, to refuse extreme measures, like a tracheotomy, colostomy, or vent. Although, deep down, he's just a man, I felt relieved of the heavy burden, of knowing he (as a Catholic priest) recognized, that some situations are TOO much, and that God would understand, not wanting to preserve "life" to ANY and ALL extent necessary. Ever since those first few weeks, in ICU, my worst fear, has been ever having to be hooked up to a vent, again. I have a hard enough time, dealing with being reliant on people, I don't want to ever be reliant on machines again.
Fr. Doug said he thought a lot of my feelings, and dark thoughts are just depression, and suggested I reevaluate my medications. I said, I'd be open to trying. I already have tried a few. I had been taking Effexor, up until last year, and felt like it was no longer working. I asked my doctor, if I could try something different, and I started Pristiq. I've been taking it for at least six months. In the past six months, I've also added Remeron, and Xanax at night (both have been increased in doses a couple of times), to help with my insomnia. That said, I'm as down as ever, and in a very dark place.
I get a little annoyed, when people just write my feelings off as depressed, because I feel the true root of my sadness, stems directly from my paralysis. I'm not saying I'm not depressed, because I clearly am. I'm just saying that, no matter what medication I take, I will ALWAYS have a certain degree of depression. I pointed out, that anti-depressants, are not going to take away the key problems, that are plaguing me: the daily bouts of AD, my physical limitations, bowel program, or my catheter. I suppose, the right medication COULD make dealing with these things more bearable, but on a whole, I honestly can't envision ever being happy, or satisfied with living the way paralysis forces me to live.
After our long talk, Fr. Doug performed the anointing of sick ritual, and we said the "Our Father" together. I hope God was listening, and can offer me some relief, one way, or the other. In the meantime, I'll take Fr. Doug's advice, and talk to my doctor, about possibly trying to change my medications. At this point, I feel I have nothing to lose. I don't want to seem unreasonable, or unwilling to take suggestions. If I didn't want help, I wouldn't bother asking. I just want some peace, and to feel better, for a change. I do wish God would just cure me, or take me. I hate feeling stuck, in constant limbo.
Our conversation, hasn't really changed my mind, about not wanting antibiotics. I feel like, if God truly does want me alive, God certainly has the power to keep me alive, despite that decision. For now, I'm willing to experiment, and see if new meds, can offer any relief. I will also continue to pray, meditate, read, and search, to try and strengthen my faith. I will continue to be open, and honest with my friends, and family, and try to enjoy each day, the best I can. I'm really trying my best. I don't know what more I can do.
- Posted using BlogPress from my iPad
He said he could see a definite reason why God wanted me here, to use my gifts, to help others. I brought up the fact, that I feel I have been generous, and giving, but wonder how long I'm meant to keep living for the sake of others. I said, it's unfair, to hold me to the standard of Jesus, when Jesus had a clear knowledge, of his purpose, about his death, and about his resurrection. He said that's true, but that life isn't always fair. I explained that I don't blame God, for my accident, because I feel it is a product of my own freewill. He agreed, and said, although God doesn't create suffering, he can make good things happen, despite of it.
I understand, that I've been blessed with gifts, despite my severe disabilities. My gifts, of writing, and painting have helped me to cope, and teach others, about paralysis. However, the daily bouts of autonomic dysreflexia, and the grueling treatments, and degrading, embarrassing nature, of being totally dependent, makes living this way, seem so overwhelming, and often overshadows, the few positives in my life. I am thankful, to be able to express my feelings, but sometimes feel like my mind itself, is my own worst enemy. Being so trapped, with nothing but my thoughts, is often a punishment, within itself, because I'm constantly remembering what I had, what I can't have, what I miss, and what I want. The disparity between my old life, and my reality, is constantly weighing down on me, and makes it hard to be satisfied with what I've been left with.
He said I seemed to be much harder on myself, than others, and said I needed to find a way to forgive myself, for the accident. He said I had to start loving myself. I have heard those words many times, but am at a loss, at how to begin to do that. He said we're often much nicer to others, than we are to ourselves, and in my case, that's certainly true. He said God, is also more forgiving than I am, which I'm hoping is true. I know I didn't intend to hurt myself, but it was MY poor judgment, and MY action, that ultimately resulted in my injury. In many ways, I feel like a murder. I feel like the person I was, died that day, and I've been grieving for her, ever since. Paralysis has stolen almost every aspect of my old life; a life a loved.
I have lost my freedom to care for myself, my privacy, my dignity, my hopes, my dreams, my career, and the life I had built for myself. In many, many ways I lost myself. I miss the old Christina. I miss living my old life. I have no to blame, for the life paralysis had given me, but myself. How do you forgive someone that has stolen everything you loved, and held dear? How do you forgive someone that has robbed you of your health, and in turn, sentenced you, to a life a suffering? How do you forgive someone, that has robbed you of your potential, and your dreams, for the future, by placing extreme obstacles, and limitations upon you? I'm not sure if I CAN forgive myself.
Talking with Fr. Doug, did help provide me comfort, in that he said I had the right, to refuse extreme measures, like a tracheotomy, colostomy, or vent. Although, deep down, he's just a man, I felt relieved of the heavy burden, of knowing he (as a Catholic priest) recognized, that some situations are TOO much, and that God would understand, not wanting to preserve "life" to ANY and ALL extent necessary. Ever since those first few weeks, in ICU, my worst fear, has been ever having to be hooked up to a vent, again. I have a hard enough time, dealing with being reliant on people, I don't want to ever be reliant on machines again.
Fr. Doug said he thought a lot of my feelings, and dark thoughts are just depression, and suggested I reevaluate my medications. I said, I'd be open to trying. I already have tried a few. I had been taking Effexor, up until last year, and felt like it was no longer working. I asked my doctor, if I could try something different, and I started Pristiq. I've been taking it for at least six months. In the past six months, I've also added Remeron, and Xanax at night (both have been increased in doses a couple of times), to help with my insomnia. That said, I'm as down as ever, and in a very dark place.
I get a little annoyed, when people just write my feelings off as depressed, because I feel the true root of my sadness, stems directly from my paralysis. I'm not saying I'm not depressed, because I clearly am. I'm just saying that, no matter what medication I take, I will ALWAYS have a certain degree of depression. I pointed out, that anti-depressants, are not going to take away the key problems, that are plaguing me: the daily bouts of AD, my physical limitations, bowel program, or my catheter. I suppose, the right medication COULD make dealing with these things more bearable, but on a whole, I honestly can't envision ever being happy, or satisfied with living the way paralysis forces me to live.
After our long talk, Fr. Doug performed the anointing of sick ritual, and we said the "Our Father" together. I hope God was listening, and can offer me some relief, one way, or the other. In the meantime, I'll take Fr. Doug's advice, and talk to my doctor, about possibly trying to change my medications. At this point, I feel I have nothing to lose. I don't want to seem unreasonable, or unwilling to take suggestions. If I didn't want help, I wouldn't bother asking. I just want some peace, and to feel better, for a change. I do wish God would just cure me, or take me. I hate feeling stuck, in constant limbo.
Our conversation, hasn't really changed my mind, about not wanting antibiotics. I feel like, if God truly does want me alive, God certainly has the power to keep me alive, despite that decision. For now, I'm willing to experiment, and see if new meds, can offer any relief. I will also continue to pray, meditate, read, and search, to try and strengthen my faith. I will continue to be open, and honest with my friends, and family, and try to enjoy each day, the best I can. I'm really trying my best. I don't know what more I can do.
- Posted using BlogPress from my iPad
Saturday, June 19, 2010
Virtual Art
I've always been on the fence in terms of how I feel towards virtual art. On one hand, I don't see it as "Fine Art," and tend to place a higher value on traditional materials: paint, chalk, ink, clay, plaster, pastels, canvas, etc. I think this is because I recognize the skill, work & cost that's involved in traditional art work, and am more familiar working with traditional supplies.. On the other hand, I can't deny that training and skill are just as important in the digital arena. Besides, let's face it, when it comes to discussing art, creativity trumps it all. Creativity aside, the cost of materials, time and labor do factor in, in terms of value. With virtual art, the artist has to invest in the equipment and software necessary to produce work, however those materials do not deplete with use and results can be infinitely copied. With traditional materials, every work of art is guaranteed to be unique.
There's something to be said for the interaction between an artist and his/her tools of trade. It is a totally different experience when you physically interact with tangible materials, versus simulated versions. The results may be similar, but the artist is missing out on the kinesthetic experience, when he/she creates their artwork through virtual means. As an artist, I love the different smells, textures and feel of working with different materials. Each material has a unique feel to it and reacts differently depending on what you mix it with and what techniques you use.
Being a disabled artist, there are so many things that I miss out on, due to my paralysis. The freedom to use a variety of materials is one of the many things I can no longer do. Although I still paint, there are tons of other materials and tools that are not suited well to be used with my mouth. Plus, the sensations of feeling things with your hands is totally different from the sensations you might feel using your foot or mouth. Even switching from one hand to another can be a new experience. If you've ever tried working with your weaker hand, I'm sure you can relate.
I miss being able to feel the tension of the scissors as they press down on the paper, and the sound the paper makes, as you slice through it. I miss the smoothness of gliding markers across paper and the smells of the ink. I miss being able to fold, crinkle, pinch, pull, glue, cut, tear and tape paper. I was never really good with clay, but miss experimenting with it. Clay can be cold and wet or oily and slimy. You can squish clay through your fingers and mold it with your hands. Building a sculpture might mean chipping away at a stone, welding metal together or sawing pieces of wood. Two materials I don't miss are chalk and charcoal. I hate the feeling of chalk: the dustiness of it, the scratchy sound it makes on paper and the dryness in creates in my hands. Some people love using chalk and charcoal, because it's great for drawing and easy to create values, by rubbing or smearing it. All of the common materials for two dimensional artwork can be simulated with computer software. Many art programs can mimic how materials blend and overlap as well. However, with digital art, you lose out on tactile texture. You can print out a picture that looks rough in texture, but it will only have the smooth surface of the paper.
Most traditional art supplies are messy. Materials like chalk, pastels and crayons are meant to be held, and often times have no covering and you must touch them directly with your skin. Such materials are not suited well for using your mouth. There are many supplies that I'd need to greatly modify or cover to use them. Although I could add coverings to make certain materials safe to put in my mouth, it often makes the materials cumbersome and awkward to grip. Wet materials like paint and ink work best for mouth art, because they are designed to be applied with instruments (brushes and pens) and provide the artist with a much safer distance to the material and work surface. The other challenge to mouth art, is that it is not easy to work in color (other than paint) or erase. Constantly having to switch out markers or color pencils is annoying and the inability to flip the pencil over, or needing a separate eraser is frustrating. There are many materials I avoid, because it is not worth the aggravation. For me, the paintbrush is the easiest to control, correct and use color. Using my mouth is also very different from using my hands and while I'm grateful to be able to at least paint, it's an entirely new experience.
I'll admit, virtual art also takes skill and talent. With most professional grade art software, you still need to start out with good drawing skills and knowledge of color. There's tons of high tech software that requires training. Most computer artists and animators have to know how to translate 3D objects onto a flat surface, mimic lighting effects and textures. Artists that make computer animation need strong understanding of traditional drawing skills (pencil and paper), before they pick up a mouse and a keyboard. I realize that most professional digital artists have fine art backgrounds as part of their training. The thing that irks me about digital art, is that there are a lot of cheaper programs out there that let the average person cut, paste and tweak photos or prefab images and then call it art. It's similar to professional photographers using an SLR 35mm manual camera, versus Joe Shmoe with his point and click, fully automatic, digital camera. It just gets on my nerves when untrained people make cookie cutter art and pass it off as original, fine art. It's totally different if you create original digital art, using your own ideas and skills. Unfortunately, the average person doesn't always know what they're looking at or the work (or lack thereof) involved in creating a work of art. That is why I sometimes get annoyed when I see "art" made from prefab clip art or someone just fooling around with filter effects on Photoshop. I feel that some computer programs make it too easy to create "digital art", which detracts from the validity and skill involved in making true, high quality art (digital or traditional).
Despite my misgivings with digital art, I've embraced the future and have begun experimenting with different possibilities. Sharing information on the materials and process I use, with the viewer, is an important part of adding value and validity to my art. I figure, if viewers are informed about the different types of software out there, they can better assess the work for themselves. It's important to me that people know what goes into making each piece and the ideas behind it. As long as I stick to that plan, I feel confident about showing my digital art, alongside my traditional paintings.
Technology has given me back the ability to easily sketch and draw with color. Although I was already familiar with Photoshop and Paint, using the mouse makes it very difficult for me to maintain control or accuracy. The program that works best for me is Sketchbook Pro, which is on my iPad. The iPad is wonderful, because it uses touch and I can draw directly on the screen, as if I were using a paintbrush, or pen. I can easily swap colors, textures (mimicking different materials), erase and store my work. I was pleasantly surprised (and shocked) at how precise you can be on it, using a stylus and at how well it simulates various materials. The other great thing about the iPad is that it's compact and light. There's no mess involved either, so I'm free to draw almost anywhere, including in bed. It has been wonderful being able to draw and sketch again.
So far I've posted a handful of drawings on my Flickr site. I also signed up for "Project Sketchbook", which is through the Arthouse Co-op. I'll be using my iPad to create all the sketches I plan to use in my book. Once the sketchbook is full, it'll get mailed back to the Co-op in Brooklyn. The sketches will ultimately go on tour across the country to several exhibits and finally stored in the Brooklyn Art Library, where people can access the drawings in person or online. I'll be able to keep track of where my book is and who's seen it. It's a great chance to raise awareness for spinal cord injuries and so far it's been fun working on it.
One other digital art venture I recently took part in was an online contest for a game I play, called "Super Poke Pets!" or "SPP" for short. The game is by Slide and available to play on social networking sites, like Facebook and Myspace. In the game you adopt a virtual pet and earn points and virtual coins, by caring for it and by having play dates with your friend's virtual pets. The coins you earn are used to buy items to decorate your pet's habitat. Players can place as many items in their habitats as they like, in an infinite amount of ways. There are millions of people that currently play and they have a rather active online forum, where players can share ideas, trade items and show off their habitats. I fell in love with game for it's cute style and open ended possibilities for creativeness. I enjoy going on the forums and seeing how other people decorate their habitats. The staff chooses a handful of the best habitat entries each week and winners get a special collector's badge and their habitat earns a spot in the game's hall of fame. There are tons and tons of amazing habitats and really creative, innovative ways that players use the in game items to create pictures. I enter my creations from time to time as well.
Back in January, I entered a picture I made, called "Picasso Inspired Habitat," which was inspired by Picasso's painting, " Girl Before a Mirror." In the picture I recreated Picasso's original painting and then added a detail of the girl's face and her reflection on each side. It was really well received and I ended up winning the "Staff Choice Award" badge and it was added to the hall of fame. It was pretty cool getting the recognition and getting to see my habitat pop up on the hall of fame window, every once in a while. They also contacted me about sharing my story with an LA Times reporter. Apparently, they had my habitat hanging in the office and they pitched the idea to the reporter, who was covering something else for Slide. I was happy to talk with them, figuring it'd be more exposure for SCIs on the west coast. We did a phone interview, but the reporter said she couldn't promise that anything would be printed. She was just interested in the story & how I created the picture. So far no word back from them about it.
Then, about a month ago, a staff member from SPP emailed me and I thought it might be regarding the newspaper article. Instead, it was about a new series of items they planned on releasing. They sell gold items, which cost real money and one of the series they do is called the "Masterpiece" series. Each masterpiece is an SPP recreation (which replaces people with SPP pets) of a famous painting and sells for about $50. The masterpieces are rare releases and purchasers get a special badge for buying them. The new series they wrote to me about, is called "Community Classics" and each gold item is a replica of community members' habitats. They are equally as rare as masterpieces, sell for $20 and also grant buyers a badge. To my surprise, they decided to use my Picasso habitat as their first "Community Classic" item! I got a special creator badge, $25 worth of game gold and my own item. It was super exciting getting to see my picture on the Facebook announcement and in the forums. I got to write about the picture (included in the forum post) and it was great exposure for my cause. I've gotten a ton of nice comments and feedback and it's been a good opportunity to promote my website.
There's something to be said for the interaction between an artist and his/her tools of trade. It is a totally different experience when you physically interact with tangible materials, versus simulated versions. The results may be similar, but the artist is missing out on the kinesthetic experience, when he/she creates their artwork through virtual means. As an artist, I love the different smells, textures and feel of working with different materials. Each material has a unique feel to it and reacts differently depending on what you mix it with and what techniques you use.
Being a disabled artist, there are so many things that I miss out on, due to my paralysis. The freedom to use a variety of materials is one of the many things I can no longer do. Although I still paint, there are tons of other materials and tools that are not suited well to be used with my mouth. Plus, the sensations of feeling things with your hands is totally different from the sensations you might feel using your foot or mouth. Even switching from one hand to another can be a new experience. If you've ever tried working with your weaker hand, I'm sure you can relate.
I miss being able to feel the tension of the scissors as they press down on the paper, and the sound the paper makes, as you slice through it. I miss the smoothness of gliding markers across paper and the smells of the ink. I miss being able to fold, crinkle, pinch, pull, glue, cut, tear and tape paper. I was never really good with clay, but miss experimenting with it. Clay can be cold and wet or oily and slimy. You can squish clay through your fingers and mold it with your hands. Building a sculpture might mean chipping away at a stone, welding metal together or sawing pieces of wood. Two materials I don't miss are chalk and charcoal. I hate the feeling of chalk: the dustiness of it, the scratchy sound it makes on paper and the dryness in creates in my hands. Some people love using chalk and charcoal, because it's great for drawing and easy to create values, by rubbing or smearing it. All of the common materials for two dimensional artwork can be simulated with computer software. Many art programs can mimic how materials blend and overlap as well. However, with digital art, you lose out on tactile texture. You can print out a picture that looks rough in texture, but it will only have the smooth surface of the paper.
Most traditional art supplies are messy. Materials like chalk, pastels and crayons are meant to be held, and often times have no covering and you must touch them directly with your skin. Such materials are not suited well for using your mouth. There are many supplies that I'd need to greatly modify or cover to use them. Although I could add coverings to make certain materials safe to put in my mouth, it often makes the materials cumbersome and awkward to grip. Wet materials like paint and ink work best for mouth art, because they are designed to be applied with instruments (brushes and pens) and provide the artist with a much safer distance to the material and work surface. The other challenge to mouth art, is that it is not easy to work in color (other than paint) or erase. Constantly having to switch out markers or color pencils is annoying and the inability to flip the pencil over, or needing a separate eraser is frustrating. There are many materials I avoid, because it is not worth the aggravation. For me, the paintbrush is the easiest to control, correct and use color. Using my mouth is also very different from using my hands and while I'm grateful to be able to at least paint, it's an entirely new experience.
I'll admit, virtual art also takes skill and talent. With most professional grade art software, you still need to start out with good drawing skills and knowledge of color. There's tons of high tech software that requires training. Most computer artists and animators have to know how to translate 3D objects onto a flat surface, mimic lighting effects and textures. Artists that make computer animation need strong understanding of traditional drawing skills (pencil and paper), before they pick up a mouse and a keyboard. I realize that most professional digital artists have fine art backgrounds as part of their training. The thing that irks me about digital art, is that there are a lot of cheaper programs out there that let the average person cut, paste and tweak photos or prefab images and then call it art. It's similar to professional photographers using an SLR 35mm manual camera, versus Joe Shmoe with his point and click, fully automatic, digital camera. It just gets on my nerves when untrained people make cookie cutter art and pass it off as original, fine art. It's totally different if you create original digital art, using your own ideas and skills. Unfortunately, the average person doesn't always know what they're looking at or the work (or lack thereof) involved in creating a work of art. That is why I sometimes get annoyed when I see "art" made from prefab clip art or someone just fooling around with filter effects on Photoshop. I feel that some computer programs make it too easy to create "digital art", which detracts from the validity and skill involved in making true, high quality art (digital or traditional).
Despite my misgivings with digital art, I've embraced the future and have begun experimenting with different possibilities. Sharing information on the materials and process I use, with the viewer, is an important part of adding value and validity to my art. I figure, if viewers are informed about the different types of software out there, they can better assess the work for themselves. It's important to me that people know what goes into making each piece and the ideas behind it. As long as I stick to that plan, I feel confident about showing my digital art, alongside my traditional paintings.
Technology has given me back the ability to easily sketch and draw with color. Although I was already familiar with Photoshop and Paint, using the mouse makes it very difficult for me to maintain control or accuracy. The program that works best for me is Sketchbook Pro, which is on my iPad. The iPad is wonderful, because it uses touch and I can draw directly on the screen, as if I were using a paintbrush, or pen. I can easily swap colors, textures (mimicking different materials), erase and store my work. I was pleasantly surprised (and shocked) at how precise you can be on it, using a stylus and at how well it simulates various materials. The other great thing about the iPad is that it's compact and light. There's no mess involved either, so I'm free to draw almost anywhere, including in bed. It has been wonderful being able to draw and sketch again.
So far I've posted a handful of drawings on my Flickr site. I also signed up for "Project Sketchbook", which is through the Arthouse Co-op. I'll be using my iPad to create all the sketches I plan to use in my book. Once the sketchbook is full, it'll get mailed back to the Co-op in Brooklyn. The sketches will ultimately go on tour across the country to several exhibits and finally stored in the Brooklyn Art Library, where people can access the drawings in person or online. I'll be able to keep track of where my book is and who's seen it. It's a great chance to raise awareness for spinal cord injuries and so far it's been fun working on it.
One other digital art venture I recently took part in was an online contest for a game I play, called "Super Poke Pets!" or "SPP" for short. The game is by Slide and available to play on social networking sites, like Facebook and Myspace. In the game you adopt a virtual pet and earn points and virtual coins, by caring for it and by having play dates with your friend's virtual pets. The coins you earn are used to buy items to decorate your pet's habitat. Players can place as many items in their habitats as they like, in an infinite amount of ways. There are millions of people that currently play and they have a rather active online forum, where players can share ideas, trade items and show off their habitats. I fell in love with game for it's cute style and open ended possibilities for creativeness. I enjoy going on the forums and seeing how other people decorate their habitats. The staff chooses a handful of the best habitat entries each week and winners get a special collector's badge and their habitat earns a spot in the game's hall of fame. There are tons and tons of amazing habitats and really creative, innovative ways that players use the in game items to create pictures. I enter my creations from time to time as well.
Back in January, I entered a picture I made, called "Picasso Inspired Habitat," which was inspired by Picasso's painting, " Girl Before a Mirror." In the picture I recreated Picasso's original painting and then added a detail of the girl's face and her reflection on each side. It was really well received and I ended up winning the "Staff Choice Award" badge and it was added to the hall of fame. It was pretty cool getting the recognition and getting to see my habitat pop up on the hall of fame window, every once in a while. They also contacted me about sharing my story with an LA Times reporter. Apparently, they had my habitat hanging in the office and they pitched the idea to the reporter, who was covering something else for Slide. I was happy to talk with them, figuring it'd be more exposure for SCIs on the west coast. We did a phone interview, but the reporter said she couldn't promise that anything would be printed. She was just interested in the story & how I created the picture. So far no word back from them about it.
Then, about a month ago, a staff member from SPP emailed me and I thought it might be regarding the newspaper article. Instead, it was about a new series of items they planned on releasing. They sell gold items, which cost real money and one of the series they do is called the "Masterpiece" series. Each masterpiece is an SPP recreation (which replaces people with SPP pets) of a famous painting and sells for about $50. The masterpieces are rare releases and purchasers get a special badge for buying them. The new series they wrote to me about, is called "Community Classics" and each gold item is a replica of community members' habitats. They are equally as rare as masterpieces, sell for $20 and also grant buyers a badge. To my surprise, they decided to use my Picasso habitat as their first "Community Classic" item! I got a special creator badge, $25 worth of game gold and my own item. It was super exciting getting to see my picture on the Facebook announcement and in the forums. I got to write about the picture (included in the forum post) and it was great exposure for my cause. I've gotten a ton of nice comments and feedback and it's been a good opportunity to promote my website.
Sunday, May 16, 2010
Slacker
Lately I've been feeling like a complete slacker. Mostly because I have painted in a while, and have nothing concrete planned. It's important to me to feel like I'm contributing to society, especially now, since I'm no longer teaching. I want to be working. I miss my job terribly. Sometimes I think teaching full time, on an elementary school schedule would be near impossible for me, in my condition. On the other hand, I'm confident that I could still do my job, if I had the assistance I needed. Realistically, I'm just not sure that I'd have the health or stamina to handle a forty (more like sixty) hour work week. So I've tried my best to compromise and still feel like I'm giving something. I never want to feel like I'm just leeching off the system. There are already too many people out there that choose to be selfish and lazy and abuse the system. That's not me.
The past two years I've had something to prepare for, every couple of months. Starting with the fundraiser, I sat for several newspaper interviews, did several online interviews, prepared for the three exhibits, painted for MFPA, went to an artist forum & did the two television shows. Now that it's all finished, I feel like I'm just sitting around. Part of the problem is the fact that I just don't feel well a lot of the time. My tolerance for the chair has been weakened, ever since I had that really bad bedsore on my upper thigh. After three or four hours I often feel feverish, have the chills or this weird tingly sensation I attribute to my catheter being pinched, or going to the bathroom. Either way, they are uncomfortable symptoms that often have no visible cause. I think it's just my body's way of letting me know I need to lay down. During the past six months or so, I've also been dealing with mysterious chest pains. It's not so much pain, as it is discomfort, but it is very annoying and makes it hard to relax. It started out as a tightness in between my ribcage and has since migrated to my left breast. At times, it feels like I have a huge boulder on top of the area. Other days, it feels like a giant is squeezing me with all its might. The worst is when it combines with my neck/shoulder pain. Most recently, I've been getting a throbbing pain all through my back, especially in my lower back. It's all very odd and frustrating, because I can't feel the exterior; I only feel the interior. Could I really be feeling my bones and muscles? I doubt it. Regardless, I've had all kinds of tests done in hopes of finding a cause and haven't had any luck. All my major organs are fine. My breathing is good and my blood work is fine. That leaves me with, "it could be stress or neurological pain." Great.
Long story short, is that I've been staying in bed quite a bit, these past six months or so. Mostly because I don't feel it's worth getting up, if I'm only going to feel crappy and crave being in bed the whole time. My painting has taken a back seat, as it is the one thing I can't do in bed. Even when I do get up, it's so few and far between that I usually don't feel like using the time to paint. However, then I feel guilty, like I'm being lazy. I have ideas ready; I just need to get started. It's especially hard to force myself when I know I don't have a set deadline or schedule. The shows kept me motivated. On the other hand, I start to think, if I got my butt in gear and painted more, I'd have more work to potentially exhibit. Instead, I've been trying to work on my website and I got some really nice color business cards printed up. I thought it would be more professional and an easy way to share my information. They're a custom design with one on my paintings on the front, along with my website address and a statistic about spinal cord injuries on the reverse side. Luckily, there are a million ways to promote yourself and/or a cause using the internet. I plan to continue working on computer stuff, but I really do need a push to paint!
In efforts of motivating myself, signed up to participate in something.called "the sketchbook project." It's run by a group called the "arthouse co-op, out of The Brooklyn Art Library. I just happened to click on a Facebook ad for it the other night, because it looked interesting. Basically, you sign up, they send you a sketchbook, you fill it & send it back. All of the sketchbooks then go on to exhibitions as part of a cross country tour. Each sketchbook gets abarcode, which can be used to track the book & see if people looked at it. The tour includes exhibits in a bunch of major cities: Brooklyn, NY Austin, TX San Francisco, CA Portland, MEAtlanta, GA &Chicago, IL. Once it's over, people will be able to look at them in the Brooklyn Art Library. I also paid a small extra fee, for the book to be digitized and added to an online library. It sounds like a really cool idea and I'm excited about participating. All I have to do is choose a theme, use the book & not change it's dimensions. I chose the theme "Help!" I thought it was perfect for the purpose of advocacy. I plan on making my sketchbook about paralysis and my hope for a cure. The cool thing is, I can sketch everything on my iPad and then print and transfer them to the book. So staying in bed is no excuse! It'll be interesting to document my progress and follow the book, on its travels. I'll definitely blog about it once I get started.
Speaking of blogs, I had read this article about a paralyzed pro gamer (Randy) & thought it would make for an interesting blog, if I could interview him. I took a chance & contacted him through his youtube site. He agreed & most likely I'll be talking to him soon, through Skype.It'll be cool to compare notes with Randy & hopefully make an interesting blog. I'm sure there are people out there that think they can't play video games, because of physical disabilities. I'm hoping by sharing mine and Randy's techniques and stories we can inspire some new gamers. I've always been into gaming, but it's been especially helpful in coping with my situation. Gaming provides a much needed escape and source of enjoyment.
Long story short, is that I've been staying in bed quite a bit, these past six months or so. Mostly because I don't feel it's worth getting up, if I'm only going to feel crappy and crave being in bed the whole time. My painting has taken a back seat, as it is the one thing I can't do in bed. Even when I do get up, it's so few and far between that I usually don't feel like using the time to paint. However, then I feel guilty, like I'm being lazy. I have ideas ready; I just need to get started. It's especially hard to force myself when I know I don't have a set deadline or schedule. The shows kept me motivated. On the other hand, I start to think, if I got my butt in gear and painted more, I'd have more work to potentially exhibit. Instead, I've been trying to work on my website and I got some really nice color business cards printed up. I thought it would be more professional and an easy way to share my information. They're a custom design with one on my paintings on the front, along with my website address and a statistic about spinal cord injuries on the reverse side. Luckily, there are a million ways to promote yourself and/or a cause using the internet. I plan to continue working on computer stuff, but I really do need a push to paint!
In efforts of motivating myself, signed up to participate in something.called "the sketchbook project." It's run by a group called the "arthouse co-op, out of The Brooklyn Art Library. I just happened to click on a Facebook ad for it the other night, because it looked interesting. Basically, you sign up, they send you a sketchbook, you fill it & send it back. All of the sketchbooks then go on to exhibitions as part of a cross country tour. Each sketchbook gets abarcode, which can be used to track the book & see if people looked at it. The tour includes exhibits in a bunch of major cities: Brooklyn, NY Austin, TX San Francisco, CA Portland, MEAtlanta, GA &Chicago, IL. Once it's over, people will be able to look at them in the Brooklyn Art Library. I also paid a small extra fee, for the book to be digitized and added to an online library. It sounds like a really cool idea and I'm excited about participating. All I have to do is choose a theme, use the book & not change it's dimensions. I chose the theme "Help!" I thought it was perfect for the purpose of advocacy. I plan on making my sketchbook about paralysis and my hope for a cure. The cool thing is, I can sketch everything on my iPad and then print and transfer them to the book. So staying in bed is no excuse! It'll be interesting to document my progress and follow the book, on its travels. I'll definitely blog about it once I get started.
Speaking of blogs, I had read this article about a paralyzed pro gamer (Randy) & thought it would make for an interesting blog, if I could interview him. I took a chance & contacted him through his youtube site. He agreed & most likely I'll be talking to him soon, through Skype.It'll be cool to compare notes with Randy & hopefully make an interesting blog. I'm sure there are people out there that think they can't play video games, because of physical disabilities. I'm hoping by sharing mine and Randy's techniques and stories we can inspire some new gamers. I've always been into gaming, but it's been especially helpful in coping with my situation. Gaming provides a much needed escape and source of enjoyment.
Friday, April 23, 2010
iPad Review (with people with disabilities in mind)
I've had my iPad for a week now & have to say, I'm loving it! I haven't gone nuts downloading a ton of apps, but I do have a variety that I think are worth mentioning. There are a few things I'd definitely like to see in the next generation of iPads and a few flaws, that Apple could probably address with software updates.
Overall, the functionality is pretty intuitive and I can do most things that anyone else could. There are a few multi-finger gestures that I can't do, but for the most part, I've been able to navigate quite well, using my stylus. Certain functions can be done in multiple ways, for example, you can enlarge or shrink pages by pinching and pulling at the corners or you can double tap. I have noticed that the iPad is very particular and is programed to sense tiny differences in movement, pressure and the duration of your finger or stylus is on the screen. Because it is so sensitive, it does seem to work more accurately and consistently with fingers, versus the stylus. There have been many times that I've been using it and I have to try to push the same area two or three times, before I get it just right. It can be annoying at times. I think the easiest solution would be, for Apple to design a capacitive stylus with a more precise tip. All of the capacitive styluses that I've come across (including the Pogo that I'm using) have a thick tip, about the circumference of a pencil eraser. If they could somehow narrow the tip to a point, it would make it easier to be accurate.
As far as accessibility to goes, I really think Apple should include some sort of override setting for the stylus. It would solve the problem of not being able to do multi-finger gestures and it would help the iPad to recognize the difference between stylus and fingers. I haven't tried the Voice option yet, but the ability to change font size and adjust the volume and brightness, in the settings menu is helpful. I'm very pleased that there aren't many external buttons. The only other "problem" I've come across in concerns of accessibility is that, some apps rely on movement and/or do not self adjust the orientation. In terms of being accessible, Apple should consider the fact that many people with disabilities cannot pick up, or move the iPadthemselves. I realize that there are only a small amount of iPad users with this unique problem, however, it is a concern to those of us dealing with paralysis and motor skill deficiencies. It's a minor issue that could most likely be easily resolved by giving users the option of shutting of kinetic features and/or individual apps could give users alternative means of controlling the device.
The iPad technically, has no "correct" orientation, and is supposed to adjust itself based on the movement of the iPad itself. You can choose to lock the orientation if you wish, however some apps (mostly games) rely on kinetics, such as Nintendo Wii. In the game Sims3, for example, you need to shake the iPad as part of earning cooking skills. Since I can't shake, or handle my iPad, I'm destined for virtual cooking failure. It would be simple for creators to allow tapping as an alternative; just as lazy people have the choice to play their Wii from the couch. Kinetic gaming features are cool, but I don't see any justification for them being absolutely necessary. Many of the current apps already allow for customization, so I don't see why Apple couldn't make the kinetic features optional.
A lot of the iPad apps are iPhone apps that Apple has tweaked for use with the iPad. The one glitch I've encountered in several apps, is that they are only setup to work in the "portrait" position. This means, you're forced to use the iPad vertically, and depending on how you have to position the iPadin order to use it, vertical might not be the most convenient orientation. I for one, use my iPad in the horizontal orientation, because the height is shorter than the width, thus making it easier for me to reach/touch the entire surface.The current apps that only work vertically, could easily provide updates to rectify the issue. Some of the TV sites like, ABC, TLC and Discovery Channel do not (yet) automatically self adjust, or the home page is vertical, while the videos can be watched in either portrait or landscape. I'm hoping more apps will update the iPad apps to work in both orientations. I find it ironic that there are (at times) unnecessary kinetic features embedded into games and yet, apps that should respond to movement, to auto-correct the orientation of the iPad don't always work.
My only other complaint is the inability to view or use anything to do with Flash. I think this is a big mistake, as tons of very popular websites use Flash and aren't accessible on the iPad. No Flash means only having a limited access to the web; which stinks. I'll be using my iPad primarily from home, so I rely on my existing wireless network for internet access. However, I'd be ticked off if I was one of the thousands of people that are paying extra for 3G (access on the go) service. I can't see paying full price for internet services, if you don't have full access. Some of my favorite sites rely on Flash, like HULU and Facebook games (like Zynga and Slide games). You can also forget about playing huge multi-player games, like World ofWarcraft and Maple Story. I can't even access the social section of my own website, because it uses Flash. If I really want/need to access Flash websites, I can switch off to my laptop. Apple would like you to think that the iPad is a smaller, more convenient version of a laptop PC, but that isn't true. The iPad has the potential to replace traditional laptops in the future, but currently, there are too many missing capabilities to make the switch from a PC to iPad alone. Right now, iPad's capabilities are stuck in between the versatility of a PC and the limitations of specialized mobile gadgets, like e-books. That said, the things the iPad CAN do are pretty sweet!
Two of the best features of the iPad are it's compact size (smaller than the average magazine) and its full touchscreen. The iPad is definitely easier to lug around than a laptop, and easier to read, and operate than smart phones. My dad is always complaining about the ever shrinking size of electronic gadgets; he says, "they're designed for Leprechauns." I know myself, that trying to use my cell phone or other electronic devices are difficult to use, because of my limited mobility. I no longer have the dexterity or fine motor skills required to push buttons that are a quarter inch in size. I'm sure many people with disabilities, and the elderly, find it frustrating, not being able to read or accurately press buttons. The iPad is great, because it allows for customization. You can increase the size and type of font of text and easily zoom the screen in and out, which makes for much easier reading. The lack of buttons is also a plus. The touch screen is far easier to operate than pushing keys or having to scroll and select things with a mouse. If I want to type on a PC, using Microsoft's on-screen keyboard, I have to use mouse to select and press each key. The process is so tedious that it's not worth it for me to use. My iPad's on-screen keyboard is huge and I touch each key directly, as if I were using a traditional keyboard. Being able to type laying down gives me more time in the day to write, answer emails and surf the web. Before I owned the iPad, I was limited to only typing if I was sitting and only being able to use the mouse, if I were laying down. Now, I have more options to how I spend my day, because I have extra time to write.
The other great features of the iPad are: e-reader, social networking, productivity, gaming, music, videos and creativity. Even though there are limitations to surfing the web, it's great to be able to check e-mails and keep up with social networking sites, like Twitter and Facebook. The e-reader feature is awesome, and has all the best qualities of the top three competitors. iPad gives users the freedom to download and purchase books from a variety of sources, so you can shop around for deals and freebies. The fact that it has a full color touchscreen, makes it feel more like you're reading an actual book or magazine. The advantage is, you can store thousands of books into it's small size, customize the font and look up words, with it's built in dictionary and search features. Not to mention, for someone like me, that has to turn pages with a stick and has an elaborate set-up (tables and book stands), every time I want to read, the e-books are a godsent. My iPad has taken out all the stress that comes along with reading and made me more motivated to want to read.
If you get tired of reading, there are tons of fun games, which are all operated by touch, similar to the Nintendo DS. You can also save space withiTunes, since you can store tons of your CDs and movies. It's pretty amazing how much stuff you can carry around in such a small device. There's also lots of great productivity apps, that give you the ability to work on the go, manage/organize information and jot down ideas. One of my favorite apps is Sketchbook Pro, which lets me create art. I haven't had the freedom to sketch in a long time. For me, the annoyance of having to ask for help every two seconds, (for an eraser or changing colors) takes away the enjoyment of drawing. The iPad sketch book gives me the freedom to switch colors and textures, as well as to make corrections on my own. It's amazing how well the program simulates different mediums and it gives you the ability to create work in layers. I'd say it's a must have for any artist.
I realize the iPad is a bit pricey, for the average middle class person. The good news is that it does come in several versions; the cheapest runs around $500. If you already own a smart phone, you might want to wait and see what (if any) changes they make to the next generation of iPads. The originaliPad is sure to drop in price as newer versions get released. If you don't own a laptop or a smart phone, you really should take a trip the Apple store and check out the iPad. Also, if you're thinking about investing in an e-reader, it's well worth the extra $100-200, considering everything the iPad can do. I'd highly recommend the iPad for people with disabilities, especially those people that enjoy reading and/or writing. It can take the place of bulkier, assistive devices, that aren't as versatile or easy to use. Plus, the iPad gives the user freedom to switch between tasks independently. I'm always grateful to have anything that gives me back a sense of freedom or independence.
Overall, the functionality is pretty intuitive and I can do most things that anyone else could. There are a few multi-finger gestures that I can't do, but for the most part, I've been able to navigate quite well, using my stylus. Certain functions can be done in multiple ways, for example, you can enlarge or shrink pages by pinching and pulling at the corners or you can double tap. I have noticed that the iPad is very particular and is programed to sense tiny differences in movement, pressure and the duration of your finger or stylus is on the screen. Because it is so sensitive, it does seem to work more accurately and consistently with fingers, versus the stylus. There have been many times that I've been using it and I have to try to push the same area two or three times, before I get it just right. It can be annoying at times. I think the easiest solution would be, for Apple to design a capacitive stylus with a more precise tip. All of the capacitive styluses that I've come across (including the Pogo that I'm using) have a thick tip, about the circumference of a pencil eraser. If they could somehow narrow the tip to a point, it would make it easier to be accurate.
As far as accessibility to goes, I really think Apple should include some sort of override setting for the stylus. It would solve the problem of not being able to do multi-finger gestures and it would help the iPad to recognize the difference between stylus and fingers. I haven't tried the Voice option yet, but the ability to change font size and adjust the volume and brightness, in the settings menu is helpful. I'm very pleased that there aren't many external buttons. The only other "problem" I've come across in concerns of accessibility is that, some apps rely on movement and/or do not self adjust the orientation. In terms of being accessible, Apple should consider the fact that many people with disabilities cannot pick up, or move the iPadthemselves. I realize that there are only a small amount of iPad users with this unique problem, however, it is a concern to those of us dealing with paralysis and motor skill deficiencies. It's a minor issue that could most likely be easily resolved by giving users the option of shutting of kinetic features and/or individual apps could give users alternative means of controlling the device.
The iPad technically, has no "correct" orientation, and is supposed to adjust itself based on the movement of the iPad itself. You can choose to lock the orientation if you wish, however some apps (mostly games) rely on kinetics, such as Nintendo Wii. In the game Sims3, for example, you need to shake the iPad as part of earning cooking skills. Since I can't shake, or handle my iPad, I'm destined for virtual cooking failure. It would be simple for creators to allow tapping as an alternative; just as lazy people have the choice to play their Wii from the couch. Kinetic gaming features are cool, but I don't see any justification for them being absolutely necessary. Many of the current apps already allow for customization, so I don't see why Apple couldn't make the kinetic features optional.
A lot of the iPad apps are iPhone apps that Apple has tweaked for use with the iPad. The one glitch I've encountered in several apps, is that they are only setup to work in the "portrait" position. This means, you're forced to use the iPad vertically, and depending on how you have to position the iPadin order to use it, vertical might not be the most convenient orientation. I for one, use my iPad in the horizontal orientation, because the height is shorter than the width, thus making it easier for me to reach/touch the entire surface.The current apps that only work vertically, could easily provide updates to rectify the issue. Some of the TV sites like, ABC, TLC and Discovery Channel do not (yet) automatically self adjust, or the home page is vertical, while the videos can be watched in either portrait or landscape. I'm hoping more apps will update the iPad apps to work in both orientations. I find it ironic that there are (at times) unnecessary kinetic features embedded into games and yet, apps that should respond to movement, to auto-correct the orientation of the iPad don't always work.
My only other complaint is the inability to view or use anything to do with Flash. I think this is a big mistake, as tons of very popular websites use Flash and aren't accessible on the iPad. No Flash means only having a limited access to the web; which stinks. I'll be using my iPad primarily from home, so I rely on my existing wireless network for internet access. However, I'd be ticked off if I was one of the thousands of people that are paying extra for 3G (access on the go) service. I can't see paying full price for internet services, if you don't have full access. Some of my favorite sites rely on Flash, like HULU and Facebook games (like Zynga and Slide games). You can also forget about playing huge multi-player games, like World ofWarcraft and Maple Story. I can't even access the social section of my own website, because it uses Flash. If I really want/need to access Flash websites, I can switch off to my laptop. Apple would like you to think that the iPad is a smaller, more convenient version of a laptop PC, but that isn't true. The iPad has the potential to replace traditional laptops in the future, but currently, there are too many missing capabilities to make the switch from a PC to iPad alone. Right now, iPad's capabilities are stuck in between the versatility of a PC and the limitations of specialized mobile gadgets, like e-books. That said, the things the iPad CAN do are pretty sweet!
Two of the best features of the iPad are it's compact size (smaller than the average magazine) and its full touchscreen. The iPad is definitely easier to lug around than a laptop, and easier to read, and operate than smart phones. My dad is always complaining about the ever shrinking size of electronic gadgets; he says, "they're designed for Leprechauns." I know myself, that trying to use my cell phone or other electronic devices are difficult to use, because of my limited mobility. I no longer have the dexterity or fine motor skills required to push buttons that are a quarter inch in size. I'm sure many people with disabilities, and the elderly, find it frustrating, not being able to read or accurately press buttons. The iPad is great, because it allows for customization. You can increase the size and type of font of text and easily zoom the screen in and out, which makes for much easier reading. The lack of buttons is also a plus. The touch screen is far easier to operate than pushing keys or having to scroll and select things with a mouse. If I want to type on a PC, using Microsoft's on-screen keyboard, I have to use mouse to select and press each key. The process is so tedious that it's not worth it for me to use. My iPad's on-screen keyboard is huge and I touch each key directly, as if I were using a traditional keyboard. Being able to type laying down gives me more time in the day to write, answer emails and surf the web. Before I owned the iPad, I was limited to only typing if I was sitting and only being able to use the mouse, if I were laying down. Now, I have more options to how I spend my day, because I have extra time to write.
The other great features of the iPad are: e-reader, social networking, productivity, gaming, music, videos and creativity. Even though there are limitations to surfing the web, it's great to be able to check e-mails and keep up with social networking sites, like Twitter and Facebook. The e-reader feature is awesome, and has all the best qualities of the top three competitors. iPad gives users the freedom to download and purchase books from a variety of sources, so you can shop around for deals and freebies. The fact that it has a full color touchscreen, makes it feel more like you're reading an actual book or magazine. The advantage is, you can store thousands of books into it's small size, customize the font and look up words, with it's built in dictionary and search features. Not to mention, for someone like me, that has to turn pages with a stick and has an elaborate set-up (tables and book stands), every time I want to read, the e-books are a godsent. My iPad has taken out all the stress that comes along with reading and made me more motivated to want to read.
If you get tired of reading, there are tons of fun games, which are all operated by touch, similar to the Nintendo DS. You can also save space withiTunes, since you can store tons of your CDs and movies. It's pretty amazing how much stuff you can carry around in such a small device. There's also lots of great productivity apps, that give you the ability to work on the go, manage/organize information and jot down ideas. One of my favorite apps is Sketchbook Pro, which lets me create art. I haven't had the freedom to sketch in a long time. For me, the annoyance of having to ask for help every two seconds, (for an eraser or changing colors) takes away the enjoyment of drawing. The iPad sketch book gives me the freedom to switch colors and textures, as well as to make corrections on my own. It's amazing how well the program simulates different mediums and it gives you the ability to create work in layers. I'd say it's a must have for any artist.
I realize the iPad is a bit pricey, for the average middle class person. The good news is that it does come in several versions; the cheapest runs around $500. If you already own a smart phone, you might want to wait and see what (if any) changes they make to the next generation of iPads. The originaliPad is sure to drop in price as newer versions get released. If you don't own a laptop or a smart phone, you really should take a trip the Apple store and check out the iPad. Also, if you're thinking about investing in an e-reader, it's well worth the extra $100-200, considering everything the iPad can do. I'd highly recommend the iPad for people with disabilities, especially those people that enjoy reading and/or writing. It can take the place of bulkier, assistive devices, that aren't as versatile or easy to use. Plus, the iPad gives the user freedom to switch between tasks independently. I'm always grateful to have anything that gives me back a sense of freedom or independence.
Monday, February 8, 2010
Art Education: Bringing Light to Contemporary Issues
Although it's been four years since my accident I still think about my "old" life on a daily basis. I can't speak for other people in my situation, but personally I find it impossible to not be reminded of everything I had and lost. One of the aspects of my old life that I miss the most is my career. It saddens me to think about all the years I spent in collage and all the time and effort I put into my work. I was truly blessed to know what I wanted early on in life and to have the motivation and talent to achieve my goals. So many of my friends floundered through college and/or chose career paths that they are unhappy with. I genuinely loved my college experience and my career. Not many people can say they enjoy their job. I have pictured myself as an art teacher ever since I was in junior high and although I always believed I'd create art on the side, I never envisioned myself as a "starving artist." I chose teaching because I wanted the stability of a steady job and for my love of children. Being an art teacher was the perfect profession for me, because I got to create art every day and inspire children to love art just as much as I do. It was also greatly satisfying to see the children creating and to see their finished artwork. Children's art is special because it captures the world from their perspective. I couldn't help but feel happy and re-energized when I would see all my students' work. Displaying the finished projects was one of my favorite things to do, because I was so proud of the work and wanted everyone to see how wonderful it was. Hanging displays also gave me the opportunity to teach the concepts or history behind each lesson to the larger school community.
It was (and still is) important to me to teach children to appreciate art and understand the vital role art plays in our every day lives. All of my lessons included historical examples of art work and highlighted the reasons behind each piece of artwork or specific techniques. This way, my students could learn about practical uses for art as well as understand how art impacts humanity and how all cultures use art as a form of expression.
I suppose there is a certain irony to my life, in the sense of how my career path changed. Most art majors in college would probably say their dream is to be a successful artist in terms of exhibiting and selling their work. In fact, it irks me that a lot of people use teaching as a "fall back" career option. My dream has always been focused on the teaching aspect of art education and never so much on my own artistic fame or success. That is why I say it is ironic that I find myself outside of the classroom and "working" as an artist.
Once I began painting again, after my accident I focused primarily on skill and technique. I joined the AMFPA and the paintings I give to them I create with the intention of them being able to reproduce them and raise money for the organization. I paint mostly still-lives for the AMFPA and working on them is great practice and skill building for me.
As many of you already know, my personal artwork focuses on my feelings and struggles with paralysis. I choose not to sell my work at this time and rather use it as a teaching tool. Although I am no longer in my classroom, it is my hope that I can educate others through my art. The paintings I've had in exhibits all touch on different issues that impact my life. Some of my work is highly person and depicts specific challenges I face or events that were traumatic. Creating each painting helps me to flush out certain emotions and thoughts I've kept bottled up. In this sense I'm sharing a small part of my burdens with the viewer. It is my hope that when people see my work they walk away with a new perspective on paralysis and desire to help raise awareness. Anyone is subject to injury and I think it's crucial that people understand that they could very easily end up in my shoes. Empathy is more important to me than sympathy. I want people to have a greater appreciation for what they have and to think about how they might feel in my situation. Many of the struggles I face are general issues that all people with disabilities can relate to. I also think it's important to shed light on the big picture and to highlight current events that impact my life, both directly and indirectly.
So, I guess you could say I am still teaching, just in a different way. I'd prefer to still be in my classroom, but am grateful that I still have an avenue for inspiring others to love art and to use art as teaching tool. I've been fortunate that people have taken an interest in my work and have supported me in my goals. I'd like to exhibit more in the future and will continue to grab opportunities to raise awareness whenever I can. For me, fame is not a concern. If I can help educate others about paralysis and in turn help find a cure, that's all that matters to me.
Friday, January 1, 2010
2009: A Year in Review
2009 was a very busy year for me!
I had my work exhibited in two galleries. The first exhibit was held at the Arts Unbound gallery, from July to September. During that time, I also participated in a filming of an episode of the show Soul Survivors. The show is about people that have had traumatic, life changing experiences and how they have overcome them. The show is produced by Ebru TV. Ebru TV is currently available through the cable provider RCN (unfortunately this provider is not in New Jersey), online on the Ebru TV official website and via satellite (not Direct TV, an actual satellite dish that uses specific coordinates). Apparently, EbruTV producers discovered my story through my involvement with the Association for Mouth and Foot Painting Artists and contacted me through them.The episode is about my accident and the impact it's had on my life; as well as how I use art to cope with my situation and help others by raising awareness. We filmed the episode on two separate occasions, which included a sit down interview and painting demonstration at my apartment and at the reception for the Arts Unbound exhibit. The episode has already aired on cable (RCN), and is now available to download and watch online. I'm waiting for permission to include the video on my site as well. Despite my ability to find a million flaws in myself; I'm very pleased at the final result. I'm hoping to share it with as many people as I possibly can! I think they did a wonderful job in putting my story together (there are just two mistakes on the captions, which include: the date of my accident and the fact that I was familiar with pool). I'm hoping to use the video as a teaching tool, in my efforts to raise awareness.
This past September to October I had a solo exhibit at Kean University (my alma mater). The exhibit featured about 15 of my paintings and was held in the student gallery. The exhibit was a big hit! I was so pleased at the turn out for the opening reception and am continually greatful to my friends (mostly ex-professors of mine) in the Kean community for their support. I got to know a lot of faculty and staff when I was an undergraduate student and have remained in touch with many of them. As an added bonus, all incoming freshman received flyers about the show and information about spinal cord injuries. I worked as a freshman advisor for three years during my years at Kean and was thrilled at the opportunity to reach out to so many people, especially college freshman who are in the most common age bracket for spinal cord injuries. News 12 (NJ cable news station) also filmed the exhibit. I'm working with John Bathke, who is a reporter for News 12 and host of his own show, called On the Scene. The show focuses on local artists, actors and musicians. I was filmed at the gallery and here in my home, similarly to Soul Survivors. I'm still working on the painting for that show and look forward to seeing it once it's all put together. I will of course, let everyone know when it is due to air and I'm waiting to hear if it can be included on my website.
As for 2010, I will be participating in another Ebru TV show called Blank Canvas and continuing to paint. I'm hoping to exhibit more in the future and work on maintaining and improving my website. In the end, all my efforts are to help raise awareness and support for a cure to paralysis. I'm praying 2010 will bring about exciting breakthroughs and new treatments, ideally a cure.
Tuesday, November 17, 2009
Technology gives a paralyzed artist a new way to express himself through art.
My brother-in-law sent me this article/video (http://gizmodo.com/5403741/eyewriter-allows-man-to-paint-despite-paralysis). It is a great demonstration of how technology can open up new possibilities & return independence to people with disabilities. As a disabled artist, I can certainly understand how liberating the creative process can be. Painting is one of few things that I can still do (with a limited amount of assistance to help set up). I feel as though I can relate to the man (Tony) in this story on many levels. He is completely paralyzed, due to ALS, but was a gifted graffiti artist before his illness. I too am paralyzed (from my chest down) and have a background in art. Prior to my accident I was an art teacher. I was also studying painting at night. The love of art & the ability to still be able to express myself through painting, has been one of the few things that gives me the strength I need to keep moving forward.I am fortunate to have a bit more function than Tony, but I know the desperate feeling being locked-in your own body.Shortly after my accident I was placed on a ventilator and completely unable to move or speak. I know exactly what it is like to have your mind racing with thoughts and being unable to communicate them. Even now, it is extremely frustrating that I can't instantaneously jot down thoughts or sketch ideas as they come to me. Although I'm sure they've developed a system for Tony to communicate his needs, I'm sure it is only a fraction of what he'd like to say. Not to mention the fact, that you can only communicate when people are with you. It becomes impossible to communicate by phone or initiate conversations. I can remember my nurses, friends and family using alphabet charts and lists to help me communicate through a system of blinks. It was an arduous task to try and hold the most basic conversations. I felt frustrated and trapped during my time spent on the ventilator.Tony's condition, ALS, or Lou Gehrig's disease is progressive and I'm guessing he has lost function/mobility over time, and will unfortunately continue to degenerate in the future. I recognize the differences in our conditions, but feel the similarities are such that I can relate to Tony's situation much better than the people that wrote the article and filmed him. I can imagine what he's going through and what emotions he's feeling because I can draw from my own experiences.My paralysis is due to a spinal cord injury, which means I lost practically all of my function/mobility in an instant. After the initial impact of a spinal cord injury, the spinal cord swells and the body goes into shock. In my case, I only recovered movement/feeling in the areas controlled by the portion of spine at or above the injury site. Luckily, that meant I was able to get off the ventilator as the swelling subsided. Although it's not much, my ability to speak and move my head and neck has given me enough function to paint using my mouth. Painting has become a vital outlet for expression for me. Painting has also given me a sense of purpose.I'm not usually interested in gadgets. I'm always focused more on finding a cure to paralysis, than finding adaptive equipment. My aversion to "gadgets," as I always call them, is due in part to my stubbornness and refusal to accept my situation as permanent. Part of me feels like if I embrace life in a wheelchair whole heartily, I'm giving up my belief in a cure. I much rather invest my time/money towards finding a cure, versus the development of adaptive equipment. That said, I understand the quality of life factor and agree that gadgets play an important role in allowing people with disabilities to retain as much freedom as possible.I'm positive that Tony's quality of life has been improved by owning/using this eye writer technology. I think it's wonderful that he can express his thoughts and continue to share his artwork with the world. I've seen similar technology used to navigate the computer as well. It is amazing that these machines can interpret so many different commands from such infinitely small movements and blinks. I know that I would feel lost without my computer these days and devastated if I could no longer paint. The power of expression is an awesome thing. This eye writer technology can give Tony (and people in similar situations) the ability to express more than just his needs. He can express his thoughts and feelings through art in ways that might not ever be able to with words. Art provides an outlet for such a deep and complicated emotions and can be very therapeutic in helping people deal with traumatic situations. It's not often that a gadget catches my eye, but this is something that excited me and gave me a need to share the info with others. Brain power is so often wasted on creating trivial things or on inventions that ultimately hurt society (like bombs and weapons). I find it refreshing to see a device that has the potential to improve the quality of peoples' lives. The eye writer is a wonderful application of technology.
Monday, November 16, 2009
My new website
I'm very excited to announce that I have a new website. Although I've had a Myspace account for some time now, I thought it would be best to have my own domain. I use most of the popular social networking and media sharing sites: Myspace, Facebook, Twitter, Youtube and Flickr. It gets bothersome to keep up with all of them and they can be limiting to people that don't have/want an account. My new website compiles all of the websites I use into a concise, easy to use format. My new website will be constantly evolving as I make changes and update the individual sites I use. I'm hoping it will provide all my friends, families and readers an easier way to access information and keep in touch.
My main objective for having a website is to use the web as a means to spread the word about spinal cord injuries and educate others about paralysis. My secondary objective is communicate with family and friends. Lastly, I hope to network with other spinal cord injury advocates and people that are living with paralysis.
I've been blessed to be able to share my story and feeling through my paintings and writing. I'm grateful to have been given opportunities to exhibit my work and speak. I hope I will continue to forge new connections and find new ways to keep exhibiting and educating others. I'm hoping my new website will be a useful tool to help me achieve my goals and a resource to others.
I'm anxious to hear opinions & feedback, so please let me know what you think. Feel free to share ideas or point out areas that need improvement!
www.christinasymanski.com
My main objective for having a website is to use the web as a means to spread the word about spinal cord injuries and educate others about paralysis. My secondary objective is communicate with family and friends. Lastly, I hope to network with other spinal cord injury advocates and people that are living with paralysis.
I've been blessed to be able to share my story and feeling through my paintings and writing. I'm grateful to have been given opportunities to exhibit my work and speak. I hope I will continue to forge new connections and find new ways to keep exhibiting and educating others. I'm hoping my new website will be a useful tool to help me achieve my goals and a resource to others.
I'm anxious to hear opinions & feedback, so please let me know what you think. Feel free to share ideas or point out areas that need improvement!
www.christinasymanski.com
Friday, September 25, 2009
Life; Paralyzed Exhibit, Kean University
LIFE; PARALYZED EXHIBIT
I’m happy to report that my recent exhibit opening was a big success. This particular exhibit is my third art exhibit and second solo show. The exhibit is at Kean University, in their Student Art Gallery. The gallery is located in Vaughn-Eames, which is the art building. Vaughn-Eames has two art galleries on the first floor, as well as a small theater. The opening reception was held in the Vaughn-Eames building lobby, from two to five p.m., Sunday, September 13, 2009. The exhibit will be available for viewing until October, 2, 2009. If you have friends or family that live in the area, please tell about the show.
HISTORY
I am a Kean University alumnus; haven graduated in 2003 with a B.A. in Fine Art (K-12 teaching certification). I had begun taking graduate courses in painting in 2004, in addition to working full time as an art teacher. I didn’t “pick up” a paintbrush again until late 2005, due to my accident and resulting spinal cord injury. I began painting by mouth about six months post accident. Painting gave me back a sense of independence, as there is very little, to nothing that I can do myself, without assistance. Being able to paint again also gave me an escape (mentally), that I desperately needed, during the first year and a half after my injury. I would consider the first two years post accident the darkest days of my life, especially because I living in a nursing home. At first, I was solely interested in building up my skills and trying to hone my technique using my mouth. I painted mostly still life paintings during that period. It was also during that time that I applied to join the Association for Mouth and Foot Painters.
By the time I moved back into my own apartment in January, 2007, I felt pretty confident in my painting abilities. At that point I felt that I was at about the same skill level I had been prior to my accident. That said, painting is like any skill; it requires constant practice and there is always room for improvement. It was around this time that I began painting more personal artwork. Many of the first paintings I did were meant to go to the AMFPA, so I tried to paint things that would be most appropriate for greeting cards and calendars. My personal work is based on ideas I’ve been storing in my mind since my accident.
I hadn’t felt emotionally prepared to really delve into my feeling related to the accident until I was in my home. During that same year that I moved, a committee of my friends and family members were working on raising funds for me, for a modified van. The committee contacted local papers about my story, in hopes of raising more funds for the van. It was through my interviews with the newspaper journalists that I got my first chance to spread the message about spinal cord injuries and research. It felt great knowing that a large group of people would have access to my story and I would be able to educate people about paralysis. I began receiving feedback immediately, and was very touched that people appreciated me sharing my story.
Since then, I’ve made it my mission to advocate for a cure to paralysis. Early on, after my accident, I had created a website dedicated to advocacy, but I still wished I could do more. Although I was feeling good about my painting skills, I was still apprehensive to share my artwork. I’m a very self conscious person by nature, so at first I wasn’t overly thrilled about having my story (worst yet, my picture) plastered all over New Jersey. However, so many people were working hard to improve my situation that declining the invitations to do the interviews was never an option, in my mind. After the first couple of articles ran I received so much positive feedback that it gave me the courage to try and find other ways I could use my accident to help others. I received dozens of letters and cards of appreciation and I thought, “I’ve been given an opportunity to speak, not only for myself, but all these other people that are struggling just like me. If I’m given a chance to talk about my accident or share my work I better do it, otherwise it’d be an insult to all these people that don’t have a voice.”
Thanks to the publicity for the fundraiser I was able to meet other advocates and people that worked for various art and/or disability related organizations. It wasn’t until after the fundraiser that I started thinking that I might actually be able to publicly exhibit my work. I worked hard to try and build up enough paintings to have a small body of work, which I could show. I never lacked ideas. My accident had provided me with enough things to paint about for a lifetime. I just needed time to create a decent amount of work, while still fulfilling my obligations to the AMFPA. I decided to only exhibit my personal work, because I felt it was a way for people to understand paralysis in a way my words alone could not express. My still lives help me improve my technical skills, while my personal works give me an outlet to deal with all that I’ve been through. I wasn’t interested in selling (nor am I now) my paintings. I just wanted to exhibit them; for people to see them. I know when I first started working on my paintings my family and friends were a bit shocked or disturbed by the images. I remember my dad joking with me, “How about painting another one of those nice flower paintings?” I would joke back saying, “Dad no one is going to care about a cure if I portray my life as rainbows and butterflies.” I want people to see the reality of my situation. I’m guessing those closest to me feel the pain I put into my work a bit more acutely than a stranger, but even still, my dad and the rest of my inner circle understand my need to paint and are very supportive. I often wonder if I put on such a good act that people don’t realize what I’m really going through, until they see my work and that’s why it knocks them off their guard.MY MOTIVATION
What’s important to me is that people can make a connection to my paintings. I’ve been fortunate so far, in that galleries have been willing to display my work. I plan to keep painting and hope I can continue to exhibit. I truly believe that if people make an emotional connection with something and/or are more informed about something, that the chances of them supporting that cause drastically increases. My current exhibit is so special to me because of my connection to the University. I spent so many hours of my life on campus (the majority in the VE art building), between classes, work and clubs, that Kean feels like a second home in a way. When I was an undergraduate I worked as a freshman advisor for three years. I got to know a wide variety of staff and faculty that I might have never met, if I hadn’t worked on campus. I consider many of my old coworkers and professors my friends and I remain in connect with them. It means a lot to me to be able to exhibit at my alma mater.
This show has given me the opportunity to share my story with thousands of students. Every incoming freshman will be given a flyer with information about my show and about spinal cord injuries. More importantly, they will learn about the bigger picture of paralysis and its effects. I’m using my life as an example and it’s my hope that can relate to me and not only support a cure, but to be aware of the choices they make every day and to be thankful for every day they are healthy. As far as spinal cord injuries go, all too many occur during the college age years. I hope my story will show students how fragile our lives really are and that I can help prevent spinal cord injuries in addition to teaching about them.
I’ll never claim to be a great artist; there are many others that are far better and more talented than me. Although, having an exhibit at Kean has definitely helped me to get over some of my insecurities. This is my first show that is not related to any disability related organization. Although I’m grateful to the other organizations I’ve worked with, and support their efforts one hundred percent, this exhibit at Kean has helped me deal with my disability in a way those other organizations couldn’t. It’s given me more confidence in the power of my message. I say this, because all the other organizations work specifically with “disabled artists.” I have a hard time dealing with that label, because it always makes me wonder why people are interested in my work. I don’t want people to take interest in my work because it was painted by a “disabled artist.” I want to be confident that people are interested in my work for the messages behind them. Sometimes I wish I didn’t have to tell people I painted them with my mouth, although it is part of my life story. I feel like the work should be considered worthy on its own merit, regardless of how I created it. I fear that people might get distracted by the way I paint, instead of focusing on what I paint about. It is an inner struggle and having my first exhibit at a gallery that is open to all artists has been a big emotional boost for me. I think of my personal artwork as a tiny glimpse into my mind. It is my hope that when people look at my work they can feel what I feel, even if only for a moment. A moment in my shoes is more than enough time for anyone to realize the importance and immediacy of finding a cure for paralysis.
*Kean's Cougar's Byte review:
*My website: www.myspace.com/sci_cure
*Link to the exhibit flyer:
https://share.acrobat.com/adc/adc.do?docid=edc563a5-0c58-4db2-814d-9032983ecc3a
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