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 advocacy. Show all posts
Showing posts with label advocacy. 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
Saturday, December 4, 2010
Updated Link: Soul Survivor
EbruTV updated their website with a new look. I really like the new streamlined, modern look they've created for their site! I worked with them in 2009 on a show they produce called "Soul Survivors." I'm updating all of my social networking sites with the new link. Check out the episode & see me talking about my accident, my experiences living with paralysis and my artwork. Please feel free to leave me feedback & share the link with family and friends! Thanks <3
http://www.ebru.tv/en/genres/LifestyleCulture/soul-survivors/episodes/1/110-christina-symanski
http://www.ebru.tv/en/genres/LifestyleCulture/soul-survivors/episodes/1/110-christina-symanski
Tuesday, September 7, 2010
What About Research?
Someone asked me if I've been to the Rutger's Keck Center, here in NJ, in response to my recent blogs. The Keck Center is dedicated to finding a cure to paralysis. Dr. Wise Young is the Founding Director, and holds open house sessions, where he gives updates on their latest research. Dr. Young also pioneered a SCI research program in China, due in part, to all of the restrictions and set-backs in the field, here in the USA. I've been following his work since my accident.
Here is what I wrote, in response to the suggestion to attend Dr. Young's lectures:
I haven't been to the Keck center. I live in Freehold, which is not far from Rutgers, and would really like to go. Every time I've considered it, it somehow falls through. I try to keep up to date with "cure" info through the Care Cure forums & other websites, like the CDRF. I have a lot of respect & gratitude for Dr. Young and other researchers in the field. I'm just at the point where I can't see any practical implications for myself. I'm sure people will not have to suffer from paralysis, some day, and that's certainly worth fighting for. I just don't think that there's much probability that, that "someday" will be anytime soon.
I've always been a planner. I thrived on organization and time management, and owe a lot of success to those skills. In college, I wrote papers weeks before they were due. As a teacher, I would plan out my entire sequence of lessons, for the year, for each grade level (I taught art, grades1-5), in August. In fact, the Friday before my accident, I had been working on lesson plans for an "art night" exhibit that I was planning for what would have been the following year. I still have file folders in my file cabinets, marked "2005, 2006, & 2007" with projected budgets and vacation plans. It's my planning that kept me focus and gave me the peace of mind in always knowing (or so I thought) what was around the next corner. Having control (or the illusion of control) reduced my stress, because I always felt prepared. Unfortunately, it's those rigid, perfectionist type qualities in me, that make is so hard for me to deal with my accident. I went from being a borderline "control freak", to having almost no control over my life, whatsoever. Learning to "go with the flow" has been a tremendous struggle for me. My accident shattered the illusion of control, I thought I had, and opened my eyes to the reality, that all the preparation, planning and effort in the world meant nothing, at the end of the day. Most people can't even begin to grasp the reality of how fragile their lives are, because it such a scary thought. It forces us all to realize how powerless we are, to so many aspects of life.
Not knowing, when, or if I'll ever be cured, is terrifying. The prospect of living like this for decades is unacceptable, to me. It's funny (well, to me, and my warped sense of humor) but, I can remember setting a sort of "time line" for myself, during my stay in Kessler. Ten years, has been the limit, in my mind, since that day. I thought, "I'll try my best to be strong & give myself ten years, to be patient and see what science will bring. If they do find a cure, I'll still be young enough to fulfill my dreams, and if not, I'll have given enough to feel satisfied with my effort." As morbid, or crazy as that time line might seem, it has served as a light at the end of the tunnel for me, and given me something somewhat tangible to deal with. I guess, it's been my way of giving myself the illusion of control over my life, even though, deep down I know anything could happen. Having a limit, gives me a tiny bit of comfort. Although I don't have a specific game plan, for what will happen when I hit that ten year marker, it's just my attempt at creating a goal, that I can focus on. Here I am, at the halfway point, of my illusionarytime line, and I don't feel as though researchers are realistically any closer to curing me, than when I was injured. It makes me feel like there's a very bleak future awaiting me. Without a cure, that means I'm stuck living with what I have now. What I have right now, doesn't seem nearly enough, to want to keep struggling, for any huge length of time. Even the thought of five more years, seems near impossible to me, at the moment. Yet, if I knew 100% that, let's say, on June 1, 2018, at 3:00pm, I'd be up and moving, and caring for myself again, I know I'd have the strength to hang in there. Even the worst criminals get a definitive sentence, and know what to expect of their fate. Right now, as far as I know, I've been given a life sentence. My sentence could potentially be shorter, but no one can give me concrete answers, and the current conditions are horrible.
I realize, I'm looking for answers that no one can give. I know that no advice will solve my dilemma. I don't really know what it is I'm seeking, in terms of help. Honestly, I just want some one to save me, and make this all go away, or for me to wake up, and still have it be the morning of June 4th, 2005. I know that's not going to happen, but I guess, I also want the average person to hear my pain, and stand up and fight for me, and everyone else with paralysis. I want people to open their eyes, and change their priorities (by putting finding cures and alleviating suffering at the top of their lists).
Related links:
1. Keck Center- http://keck.rutgers.edu/center/center.html
2. Just A Dollar Campaign- http://www.adollarplease.org/
Here is what I wrote, in response to the suggestion to attend Dr. Young's lectures:
I haven't been to the Keck center. I live in Freehold, which is not far from Rutgers, and would really like to go. Every time I've considered it, it somehow falls through. I try to keep up to date with "cure" info through the Care Cure forums & other websites, like the CDRF. I have a lot of respect & gratitude for Dr. Young and other researchers in the field. I'm just at the point where I can't see any practical implications for myself. I'm sure people will not have to suffer from paralysis, some day, and that's certainly worth fighting for. I just don't think that there's much probability that, that "someday" will be anytime soon.
I've always been a planner. I thrived on organization and time management, and owe a lot of success to those skills. In college, I wrote papers weeks before they were due. As a teacher, I would plan out my entire sequence of lessons, for the year, for each grade level (I taught art, grades1-5), in August. In fact, the Friday before my accident, I had been working on lesson plans for an "art night" exhibit that I was planning for what would have been the following year. I still have file folders in my file cabinets, marked "2005, 2006, & 2007" with projected budgets and vacation plans. It's my planning that kept me focus and gave me the peace of mind in always knowing (or so I thought) what was around the next corner. Having control (or the illusion of control) reduced my stress, because I always felt prepared. Unfortunately, it's those rigid, perfectionist type qualities in me, that make is so hard for me to deal with my accident. I went from being a borderline "control freak", to having almost no control over my life, whatsoever. Learning to "go with the flow" has been a tremendous struggle for me. My accident shattered the illusion of control, I thought I had, and opened my eyes to the reality, that all the preparation, planning and effort in the world meant nothing, at the end of the day. Most people can't even begin to grasp the reality of how fragile their lives are, because it such a scary thought. It forces us all to realize how powerless we are, to so many aspects of life.
Not knowing, when, or if I'll ever be cured, is terrifying. The prospect of living like this for decades is unacceptable, to me. It's funny (well, to me, and my warped sense of humor) but, I can remember setting a sort of "time line" for myself, during my stay in Kessler. Ten years, has been the limit, in my mind, since that day. I thought, "I'll try my best to be strong & give myself ten years, to be patient and see what science will bring. If they do find a cure, I'll still be young enough to fulfill my dreams, and if not, I'll have given enough to feel satisfied with my effort." As morbid, or crazy as that time line might seem, it has served as a light at the end of the tunnel for me, and given me something somewhat tangible to deal with. I guess, it's been my way of giving myself the illusion of control over my life, even though, deep down I know anything could happen. Having a limit, gives me a tiny bit of comfort. Although I don't have a specific game plan, for what will happen when I hit that ten year marker, it's just my attempt at creating a goal, that I can focus on. Here I am, at the halfway point, of my illusionarytime line, and I don't feel as though researchers are realistically any closer to curing me, than when I was injured. It makes me feel like there's a very bleak future awaiting me. Without a cure, that means I'm stuck living with what I have now. What I have right now, doesn't seem nearly enough, to want to keep struggling, for any huge length of time. Even the thought of five more years, seems near impossible to me, at the moment. Yet, if I knew 100% that, let's say, on June 1, 2018, at 3:00pm, I'd be up and moving, and caring for myself again, I know I'd have the strength to hang in there. Even the worst criminals get a definitive sentence, and know what to expect of their fate. Right now, as far as I know, I've been given a life sentence. My sentence could potentially be shorter, but no one can give me concrete answers, and the current conditions are horrible.
I realize, I'm looking for answers that no one can give. I know that no advice will solve my dilemma. I don't really know what it is I'm seeking, in terms of help. Honestly, I just want some one to save me, and make this all go away, or for me to wake up, and still have it be the morning of June 4th, 2005. I know that's not going to happen, but I guess, I also want the average person to hear my pain, and stand up and fight for me, and everyone else with paralysis. I want people to open their eyes, and change their priorities (by putting finding cures and alleviating suffering at the top of their lists).
Related links:
1. Keck Center- http://keck.rutgers.edu/center/center.html
2. Just A Dollar Campaign- http://www.adollarplease.org/
Sunday, July 18, 2010
Summer Safety
As you may or may not know, the 5th anniversary if my accident was this past June. I was injured in a swimming accident, which left me paralyzed from my chest down. A split second decision to do a shallow dive changed my life forever. It was a stupid mistake (that thousands of people make every summer) that I'm still paying for, five years later.
I no longer have the ability to care for myself. Paralysis has robbed me of my independence, privacy, career, relationships, dreams and so much more. My accident literally flipped my life upside down overnight. Right now there is no cure to paralysis, so I have to face the reality that I might spend the rest of my life in a wheelchair. I might never walk again, feel most of my body or be able to live without relying on others for my daily needs. It's a hard pill to swallow. Although I have hope for a cure, I have to live for today & deal with what I have now. It's important to me that other people understand how awful paralysis is, and why we should fight for a cure. I use my life as an example of how quickly life can change and hope people can learn from my experience.
According to the Christopher & Dana Reeve Foundation, 6,500 teens end up going to the ER every summer, due to diving accidents. That does not include other summer related injuries, like biking, riding motor cycles, surfing or sports; which are all common causes for spinal cord injuries. Given that the annual rate of spinal cord injury (USA) is about 12,000, that means over half of all spinal cord injuries occur during the summer months. The CDRF estimates that there are approximately 200,000 people currently living (in the United States) with paralysis, due to recreational related spinal cord injuries. I'm one of those people.
Please take the time to learn more about paralysis & support research for a cure. There are many causes of paralysis. Unfortunately, many cases are due disease or preexisting medical condition and can not be avoided or prevented. Most spinal cord injuries can be avoided or prevented. Educate yourself and others of the common causes of spinal cord injuries and be mindful of safety measures that you can take to help prevent yourself and/or others from injury. There are some simple tips that you should know and discuss with any children/young adults in your life. The CDRF Paralysis Resource Center has put together a list for summer safety. Please check it out & share the info with friends & family (http://www.christopherreeve.org/site/c.mtKZKgMWKwG/b.5283099/k.6B65/Summer_Safety_Checklist.htm?msource=email&auid=6574797). It'll only take five minutes and could potentially save you or a loved one from getting injured. It's something I wish I had been more aware of at the time of my accident. It's so common to feel invincible when you're young and think it's important for everyone to be reminded of how easily a careless mistake can result in a serious injury. If I had read this checklist five years ago, it could have made me more cautious and i could have potentially made better decisions. Who knows? The point is, it never hurts to play things safe.
Thanks for reading & enjoy the rest of your summer!
- Posted using BlogPress from my iPad
I no longer have the ability to care for myself. Paralysis has robbed me of my independence, privacy, career, relationships, dreams and so much more. My accident literally flipped my life upside down overnight. Right now there is no cure to paralysis, so I have to face the reality that I might spend the rest of my life in a wheelchair. I might never walk again, feel most of my body or be able to live without relying on others for my daily needs. It's a hard pill to swallow. Although I have hope for a cure, I have to live for today & deal with what I have now. It's important to me that other people understand how awful paralysis is, and why we should fight for a cure. I use my life as an example of how quickly life can change and hope people can learn from my experience.
According to the Christopher & Dana Reeve Foundation, 6,500 teens end up going to the ER every summer, due to diving accidents. That does not include other summer related injuries, like biking, riding motor cycles, surfing or sports; which are all common causes for spinal cord injuries. Given that the annual rate of spinal cord injury (USA) is about 12,000, that means over half of all spinal cord injuries occur during the summer months. The CDRF estimates that there are approximately 200,000 people currently living (in the United States) with paralysis, due to recreational related spinal cord injuries. I'm one of those people.
Please take the time to learn more about paralysis & support research for a cure. There are many causes of paralysis. Unfortunately, many cases are due disease or preexisting medical condition and can not be avoided or prevented. Most spinal cord injuries can be avoided or prevented. Educate yourself and others of the common causes of spinal cord injuries and be mindful of safety measures that you can take to help prevent yourself and/or others from injury. There are some simple tips that you should know and discuss with any children/young adults in your life. The CDRF Paralysis Resource Center has put together a list for summer safety. Please check it out & share the info with friends & family (http://www.christopherreeve.org/site/c.mtKZKgMWKwG/b.5283099/k.6B65/Summer_Safety_Checklist.htm?msource=email&auid=6574797). It'll only take five minutes and could potentially save you or a loved one from getting injured. It's something I wish I had been more aware of at the time of my accident. It's so common to feel invincible when you're young and think it's important for everyone to be reminded of how easily a careless mistake can result in a serious injury. If I had read this checklist five years ago, it could have made me more cautious and i could have potentially made better decisions. Who knows? The point is, it never hurts to play things safe.
Thanks for reading & enjoy the rest of your summer!
- 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.
Friday, June 18, 2010
Proposed budget cuts could force disabled New Jerseyans into nursing homes.
For those of you that are disabled, living in New Jersey & receive PCA (personal care services), such as home health aides, you should know that Governor Christie's new budget proposes to cut reimbursement by 17%. The program I use for paying my aides, Personal Preference recently sent all participants a letter notifying us about this about this possible change. If it passes it will mean a $2.10 per hour decrease to home health aide salaries. That is outrageous! I'm writing to my legislators online & through snail mail. You can find your legislator's information at www.njleg.state.nj.us. If you or your loved ones may be effected by this proposed cut, I urge you to write as well. Tell legislators your story & how this budget cut could impact you!
Here is my letter, if you wish to use it as an example:
"Dear Legeslator,
Hello. My name is Christina Symanski. I'm a twenty nine year old resident of Freehold, New Jersey. I have lived in New Jersey my entire life, mostly in Union and Middlesex counties. I graduated with from Kean University in 2003, with my B.A. in Fine Art (education certification K-12). After college, I worked as an art teacher in the New Jersey public school system (Lakewood and East Brunswick) for two years. I would still love to be teaching in East Brunswick; unfortunately my career was cut short in 2005 due to an accident. In June of 2005 (two weeks before the school year was over) I broke my neck in a swimming accident and was permanently paralyzed from my chest down.
Paralysis has robbed me of independence, freedom, privacy, modesty, career, relationships and many of my dreams for the future. I went from being a perfectly healthy, able bodied, working member of society, to being completely dependent on others, over night. I no longer have control of any functional movements of my body. I am completely at the mercy of others for all of life's daily needs. Living with paralysis is something you must experience, to fully understand how awful it is and how many small things we take for granted, when we are healthy (a perfect example would be having an itch you cannot scratch). High level spinal cord injuries, like mine, affect every single aspect of life. As of right now, there is no cure, so I am forced to do the best I can, by moving forward with my new life.
Life with paralysis has been a day to day struggle. My days are filled with pills, home health aides, nurses and medical equipment. I rely heavily on others to help me accomplish the simplest of life's tasks, such as dressing, eating, using the restroom and bathing. It has been a difficult and drastic adjustment from being totally independent and on my feet. I often look back and wonder how I've survived thus far.
I think one of the key components to my personal recovery has been the ability to live in my own home. Shortly after my accident and hospitalization, I moved into a nursing facility. At the time, I was newly paralyzed, terrified and did not have the strength or the knowledge to live on my own, and had no other alternative. The year I spent in the nursing home was by far the worst year of my life. Imagine losing the ability to care for yourself, your job, your home, and your freedom over night, while living in a strange environment, with no privacy and nothing to comfort you. Every day I lived in the facility I felt as though I had never left the hospital. It was a little over a year of continuous insomnia, absolutely no privacy (I shared half a room, which was divided by a curtain) and being told how and when I could shower, sleep and eat. I would not send my worst enemy to live in a nursing home. The entire experience drained the little bit of hope and happiness I had left and I knew I would not survive living there. I made it my goal to get out and back into the community. Through hard work, determination and a lot of help from a handful of state employees (Division of Disability, Medicaid, Dept. of Health and Senior Services and HUD), I achieved that goal.
Living in the community, in my own home has made my life so much better. Living in my own apartment has given me back some of the freedoms I'd lost, privacy (as much as possible), and the ability to be as independent as I can. I feel more in control of my own life and have the freedom to manage my care on a one on one basis, and on my terms. I feel like a member of society again. I have a much higher sense of self and morale. I have proven to myself that there can be life after paralysis; not just sitting around passing time, but an actual good quality of living. Since I've been home, I've done my best to contribute and give back to the community. I joined the Association for Mouth Painting Artists, and have had several art exhibits here in New Jersey. My story has been featured in the Star Ledger, Asbury Park Press, and several other publications. I've been on New Jersey channel News12 and on satellite TV. I have made it my mission to use my story to help raise awareness of spinal cord injuries and paralysis.
I know that if I were still living in a nursing facility today, I'd surely be a shell of the person I was (and am). I'm certain I would have lost my will to live, if I were still there. For me, it is quality of life that counts, not quantity. No one should have to have a lower quality life, when improvements are possible and are available. When I was planning to leave the nursing home I was shocked to find all of the wonderful programs and services that are available to people with disabilities, here in New Jersey. I am extremely grateful to the state for providing me with the resources I need to survive. That said, I am extremely worried and upset over the proposed budget cuts to PCA (personal care assistance) services, in Governor Christie's upcoming budget.
I currently receive 56 hours of care per week, with a home health aide and 3hours every other day with a nurse. My aides and my nurses are my lifeline. Without them, I'd have no way to care for myself. When you think about it, eight hours each day is not much, if consider the fact I cannot use my limbs. Yet, with proper management and supplies, I make do. My aides rely on me, just as much as I rely on them. I am their employer and they count on me for a reasonable salary and hours, so that they can support themselves. All of my care falls under a Home and Community Based waiver and I receive both Medicaid and Medicare. I pay my rent and bills with my disability benefits and help through HUD. Everything I need for my personal care (medicine, aides, nursing, supplies, doctors and equipment) is covered by a set budget of $9881 per month, which is provided by the Medicaid waiver and Medicare. On the contrary, when I lived in the facility, the state was spending approximately $500 per day for my care (around$15,000 per month). I'm much happier and healthier in my home, than in a facility and can receive the same amount of care for less cost to the state.
If Governor Christie's budget cut passes, that will mean a 17% decrease in funding to the reimbursement rate for Medicaid home health services. This is not acceptable, nor is it a fiscally sound decision. A decrease in funding would force programs, like Personal Preference, through which I receive my home health aides, to cut my workers’ salaries by $2.10 per hour. My employees cannot afford a cut in their salaries and I do not have any other means to pay them. This proposed budget cut, could make it impossible for people like me to retain home health services. I cannot live on my own without those services. Cutting my employee's salaries could potentially force me (and many other disabled citizens) to move back into a nursing facility. It makes no sense to do this. Those of us living in the community need to be able to pay our aides competitive rates, comparable to nursing facilities, in order to keep the reliable employees that we desperately depend on. Sending people back into facilities would reduce their quality of living and increase the cost to Medicaid. It is a lose-lose proposal.
I'm asking from the bottom of my heart and on the behalf of all the disabled people that cannot express themselves, to please consider eliminating this proposed cut. It will not result in savings. It will force home health workers to take jobs (or become unemployed if they are not certified to work in facilities) in the nursing homes and it will force many of us in the disabled community, to follow their lead. It is a fact that nursing home costs outweigh home health costs. Please review these facts and put yourself in my shoes. I was perfectly healthy five years ago and now I'm not. I put my trust in the government and my elected officials to do what's best, on behalf. Please keep my situation in mind (and the hundreds, if not thousands of other disabled New Jerseyans) and urge Governor Christie to do away with this particular budget cut. Cutting home health services will only cut into my quality of life, it will not decrease the deficit.
Thank you for your time and consideration. I'm trusting you will do what's right.
Sincerely,
Christina Symanski
www.christinasymanski.com"
Here is my letter, if you wish to use it as an example:
"Dear Legeslator,
Hello. My name is Christina Symanski. I'm a twenty nine year old resident of Freehold, New Jersey. I have lived in New Jersey my entire life, mostly in Union and Middlesex counties. I graduated with from Kean University in 2003, with my B.A. in Fine Art (education certification K-12). After college, I worked as an art teacher in the New Jersey public school system (Lakewood and East Brunswick) for two years. I would still love to be teaching in East Brunswick; unfortunately my career was cut short in 2005 due to an accident. In June of 2005 (two weeks before the school year was over) I broke my neck in a swimming accident and was permanently paralyzed from my chest down.
Paralysis has robbed me of independence, freedom, privacy, modesty, career, relationships and many of my dreams for the future. I went from being a perfectly healthy, able bodied, working member of society, to being completely dependent on others, over night. I no longer have control of any functional movements of my body. I am completely at the mercy of others for all of life's daily needs. Living with paralysis is something you must experience, to fully understand how awful it is and how many small things we take for granted, when we are healthy (a perfect example would be having an itch you cannot scratch). High level spinal cord injuries, like mine, affect every single aspect of life. As of right now, there is no cure, so I am forced to do the best I can, by moving forward with my new life.
Life with paralysis has been a day to day struggle. My days are filled with pills, home health aides, nurses and medical equipment. I rely heavily on others to help me accomplish the simplest of life's tasks, such as dressing, eating, using the restroom and bathing. It has been a difficult and drastic adjustment from being totally independent and on my feet. I often look back and wonder how I've survived thus far.
I think one of the key components to my personal recovery has been the ability to live in my own home. Shortly after my accident and hospitalization, I moved into a nursing facility. At the time, I was newly paralyzed, terrified and did not have the strength or the knowledge to live on my own, and had no other alternative. The year I spent in the nursing home was by far the worst year of my life. Imagine losing the ability to care for yourself, your job, your home, and your freedom over night, while living in a strange environment, with no privacy and nothing to comfort you. Every day I lived in the facility I felt as though I had never left the hospital. It was a little over a year of continuous insomnia, absolutely no privacy (I shared half a room, which was divided by a curtain) and being told how and when I could shower, sleep and eat. I would not send my worst enemy to live in a nursing home. The entire experience drained the little bit of hope and happiness I had left and I knew I would not survive living there. I made it my goal to get out and back into the community. Through hard work, determination and a lot of help from a handful of state employees (Division of Disability, Medicaid, Dept. of Health and Senior Services and HUD), I achieved that goal.
Living in the community, in my own home has made my life so much better. Living in my own apartment has given me back some of the freedoms I'd lost, privacy (as much as possible), and the ability to be as independent as I can. I feel more in control of my own life and have the freedom to manage my care on a one on one basis, and on my terms. I feel like a member of society again. I have a much higher sense of self and morale. I have proven to myself that there can be life after paralysis; not just sitting around passing time, but an actual good quality of living. Since I've been home, I've done my best to contribute and give back to the community. I joined the Association for Mouth Painting Artists, and have had several art exhibits here in New Jersey. My story has been featured in the Star Ledger, Asbury Park Press, and several other publications. I've been on New Jersey channel News12 and on satellite TV. I have made it my mission to use my story to help raise awareness of spinal cord injuries and paralysis.
I know that if I were still living in a nursing facility today, I'd surely be a shell of the person I was (and am). I'm certain I would have lost my will to live, if I were still there. For me, it is quality of life that counts, not quantity. No one should have to have a lower quality life, when improvements are possible and are available. When I was planning to leave the nursing home I was shocked to find all of the wonderful programs and services that are available to people with disabilities, here in New Jersey. I am extremely grateful to the state for providing me with the resources I need to survive. That said, I am extremely worried and upset over the proposed budget cuts to PCA (personal care assistance) services, in Governor Christie's upcoming budget.
I currently receive 56 hours of care per week, with a home health aide and 3hours every other day with a nurse. My aides and my nurses are my lifeline. Without them, I'd have no way to care for myself. When you think about it, eight hours each day is not much, if consider the fact I cannot use my limbs. Yet, with proper management and supplies, I make do. My aides rely on me, just as much as I rely on them. I am their employer and they count on me for a reasonable salary and hours, so that they can support themselves. All of my care falls under a Home and Community Based waiver and I receive both Medicaid and Medicare. I pay my rent and bills with my disability benefits and help through HUD. Everything I need for my personal care (medicine, aides, nursing, supplies, doctors and equipment) is covered by a set budget of $9881 per month, which is provided by the Medicaid waiver and Medicare. On the contrary, when I lived in the facility, the state was spending approximately $500 per day for my care (around$15,000 per month). I'm much happier and healthier in my home, than in a facility and can receive the same amount of care for less cost to the state.
If Governor Christie's budget cut passes, that will mean a 17% decrease in funding to the reimbursement rate for Medicaid home health services. This is not acceptable, nor is it a fiscally sound decision. A decrease in funding would force programs, like Personal Preference, through which I receive my home health aides, to cut my workers’ salaries by $2.10 per hour. My employees cannot afford a cut in their salaries and I do not have any other means to pay them. This proposed budget cut, could make it impossible for people like me to retain home health services. I cannot live on my own without those services. Cutting my employee's salaries could potentially force me (and many other disabled citizens) to move back into a nursing facility. It makes no sense to do this. Those of us living in the community need to be able to pay our aides competitive rates, comparable to nursing facilities, in order to keep the reliable employees that we desperately depend on. Sending people back into facilities would reduce their quality of living and increase the cost to Medicaid. It is a lose-lose proposal.
I'm asking from the bottom of my heart and on the behalf of all the disabled people that cannot express themselves, to please consider eliminating this proposed cut. It will not result in savings. It will force home health workers to take jobs (or become unemployed if they are not certified to work in facilities) in the nursing homes and it will force many of us in the disabled community, to follow their lead. It is a fact that nursing home costs outweigh home health costs. Please review these facts and put yourself in my shoes. I was perfectly healthy five years ago and now I'm not. I put my trust in the government and my elected officials to do what's best, on behalf. Please keep my situation in mind (and the hundreds, if not thousands of other disabled New Jerseyans) and urge Governor Christie to do away with this particular budget cut. Cutting home health services will only cut into my quality of life, it will not decrease the deficit.
Thank you for your time and consideration. I'm trusting you will do what's right.
Sincerely,
Christina Symanski
www.christinasymanski.com"
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.
Tuesday, January 19, 2010
Report about spinal cord injuries in Haiti
I just read this report by ABC http://abcnews.go.com/Health/Wellness/haiti-spine-specific-medical-aid-doctors/story?id=9554088&page=1 (the Christopher & Dana Reeve foundation just posted it on their Facebook).The report addresses the issue of spinal cord injuries due to the earthquake in Haiti. I'm sure the number of spinal cord injuries is staggering, considering the magnitude of devastation. I'm really pleased to see that there are initiatives under way to try and provide care to all of the survivors. I only wish (as does everyone, I'm sure) there were a way to get the medical care to survivors faster.I've been thinking about this specific problem ever since the earthquake occurred and wish I could do more.
Given my own injury (C4 complete) I understand all to well how much care these people need and how critical those first few days/hours are, after sustaining a spinal cord injury. I can only begin to imagine the pain and suffering the Haitian people are going through. It is understandable that the people with spinal cord injuries are being injured further in the desperation to save their lives. I'm sure the average person helping to rescue or free people from the rubble has no way of knowing how severely someone might be wounded. Even if it's clear that someone has been paralyzed, there is such limited access to equipment that I'm sure the priority is just getting the person in to see a doctor with what ever means they have to bring them there. Quick access to medical care is crucial with any severe injury and it's almost unbelievable that people are surviving days trapped beneath the wreckage. It is a race against the clock for the rescuers and survivors. The survivors need medical care as quickly as possible and the rescuers have to move as fast as they can for their own safety as well. It must be terrifying having to worry about tremors which could possibly kill the people still waiting to be saved and/or injure the rescuers as well.
I was pulled out of the pool (which probably did more damage) seconds after I broke my neck. My rescuers thought I was drowning (which I was) and had no way of knowing I had broken my neck until I was out of the water. I was taken away by ambulance quickly and had the best available treatments, in a clean, modern intensive care unit and yet I still almost died. Four years later, I still require special equipment and aide on a daily basis. I rely on government programs for medical supplies, medicine, medical care and day to day help. Its heartbreaking to know that the people in Haiti have no support systems or programs to fall back on. I'm so glad that there are groups out there that can hopefully coordinate their efforts to help give those people with spinal cord injures the care they need. Until a cure is found, paralysis is a lifelong condition and the survivors will need a tremendous amount more help than able bodied survivors. It will be a miracle if many people manage to pull through "recovery" and be stable enough to continue on with their lives. This earthquake has already robbed too many people of their homes, possessions, loved ones and health. Although we can never get back all the lives lost, I hope we can help give Haiti an even better system & infrastructure than they had before the earthquake.For those living with paralysis, they will need more than just the short term rescue efforts. They will need a system stable enough to provide help long after the cities are rebuilt. I hope that there will be a future filled with the care and support services for the Haitian people. I'm sure the country can rebound and advance if its people are given a fighting chance.
My heart goes out to all the people suffering in Haiti and to all the people that are helping the recovery efforts.
Given my own injury (C4 complete) I understand all to well how much care these people need and how critical those first few days/hours are, after sustaining a spinal cord injury. I can only begin to imagine the pain and suffering the Haitian people are going through. It is understandable that the people with spinal cord injuries are being injured further in the desperation to save their lives. I'm sure the average person helping to rescue or free people from the rubble has no way of knowing how severely someone might be wounded. Even if it's clear that someone has been paralyzed, there is such limited access to equipment that I'm sure the priority is just getting the person in to see a doctor with what ever means they have to bring them there. Quick access to medical care is crucial with any severe injury and it's almost unbelievable that people are surviving days trapped beneath the wreckage. It is a race against the clock for the rescuers and survivors. The survivors need medical care as quickly as possible and the rescuers have to move as fast as they can for their own safety as well. It must be terrifying having to worry about tremors which could possibly kill the people still waiting to be saved and/or injure the rescuers as well.
I was pulled out of the pool (which probably did more damage) seconds after I broke my neck. My rescuers thought I was drowning (which I was) and had no way of knowing I had broken my neck until I was out of the water. I was taken away by ambulance quickly and had the best available treatments, in a clean, modern intensive care unit and yet I still almost died. Four years later, I still require special equipment and aide on a daily basis. I rely on government programs for medical supplies, medicine, medical care and day to day help. Its heartbreaking to know that the people in Haiti have no support systems or programs to fall back on. I'm so glad that there are groups out there that can hopefully coordinate their efforts to help give those people with spinal cord injures the care they need. Until a cure is found, paralysis is a lifelong condition and the survivors will need a tremendous amount more help than able bodied survivors. It will be a miracle if many people manage to pull through "recovery" and be stable enough to continue on with their lives. This earthquake has already robbed too many people of their homes, possessions, loved ones and health. Although we can never get back all the lives lost, I hope we can help give Haiti an even better system & infrastructure than they had before the earthquake.For those living with paralysis, they will need more than just the short term rescue efforts. They will need a system stable enough to provide help long after the cities are rebuilt. I hope that there will be a future filled with the care and support services for the Haitian people. I'm sure the country can rebound and advance if its people are given a fighting chance.
My heart goes out to all the people suffering in Haiti and to all the people that are helping the recovery efforts.
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.
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
One Degree of Separation Campaign
The Christopher & Dana Reeve Foundation is running a campaign called "One Degree of Separation," in attemps to help raise funds for research to find a cure to paralysis. Their goal is to raise $1.275 million. According to a 2009 study conducted by the CDRF, there are approximately 6 million people living with paralysis. Of the six million, 1.275 people are living with paralysis due to spinal cord injuries. The campaign targets those of us who have been impacted by spinal cord injuries. The mission, is to get each person in the spinal cord injury community (this includes, families, friends, doctors, nurses, etc.) to donate just $1 dollar. '
Nowadays one dollar can't get you very much. Imagine however, what an impact one dollar could make if everyone contributed. I think giving a dollar for a cure is certainly a bargain! A cure would be a priceless gift to those of us living with paralysis. One dollar is a small investment that has the potential to make huge impact on millions of lives.
The campaign also has a website where you can read stories and see pictures of people that are living with paralysis. I think it's a great way to see the diversity of the people affected by spinal cord injuries and puts it a face to the problem. It's wonderful that the CDRF took the time to compile these individual stories. The pictures and stories can touch people's hearts in such a way that facts and statistics can not.
Just remember that behind every statistic there is a real person. You'll find my picture and story on the site, among many others. I encourage you to take the time to read the stories and share the information with family and friends. Most importantly, please donate a dollar.
I've included a link on my website and below.
http://www.reevefoundation.org/
Nowadays one dollar can't get you very much. Imagine however, what an impact one dollar could make if everyone contributed. I think giving a dollar for a cure is certainly a bargain! A cure would be a priceless gift to those of us living with paralysis. One dollar is a small investment that has the potential to make huge impact on millions of lives.
The campaign also has a website where you can read stories and see pictures of people that are living with paralysis. I think it's a great way to see the diversity of the people affected by spinal cord injuries and puts it a face to the problem. It's wonderful that the CDRF took the time to compile these individual stories. The pictures and stories can touch people's hearts in such a way that facts and statistics can not.
Just remember that behind every statistic there is a real person. You'll find my picture and story on the site, among many others. I encourage you to take the time to read the stories and share the information with family and friends. Most importantly, please donate a dollar.
I've included a link on my website and below.
http://www.reevefoundation.org/
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
I Believe Inc.
Hi everyone!
I'm happy to announce that I'll be writing weekly blogs for I Believe Inc. on their website. I Believe Inc. is a non-profit organization, dedicated to raising awareness about spinal cord injuries (SCIs), improving the lives of people living with paralysis and supporting research for a cure. The organization was recently founded by my friend Rich Gaskin (better known as Professir X); with support from a small group of family, friends & fellow SCI advocates.
For those of you that might not have heard of “Professir X,” you can check out his website (http://www.myspace.com/professirx ). He has been in a wheel chair for many years now (due to a spinal cord injury) and has traveled all over the world advocating for a cure to paralysis and educating others about SCI. Rich is a musician (rapper) and he uses the stage name “Professir X” for his performances and videos. As Professir X, Rich teaches others about paralysis through his songs, which send a positive, uplifting message of hope to his audience. Rich is also producing videos for I Believe TV as part of his many advocacy initiatives. I Believe TV is available to view online through the I Believe Inc. website and currently on local public access television stations (here in NJ). In addition to I Believe TV and Rich’s musical performances, I Believe Inc. is working on programs that will promote a variety of accessible events and provide resources and information to help improve the lives of people living with paralysis.
I Believe Incorporation’s philosophy is all about teamwork. I Believe Inc. has partnered up with similar non-profit organizations, to help one another unite and work together towards the goal of finding a cure to paralysis and improving quality of life. Just recently, I Believe Inc. received a “Quality of Life” grant from the Christopher & Dana Reeve Foundation and we are thrilled to be working alongside them. I Believe Inc. is also working with the National Spinal Cord Injury Association and helping to promote the “JustADollar” campaign (through the Rutgers University Foundation).
I’m so pleased to have been asked to be a part of I Believe Inc and hope you’ll join me, in helping to raise awareness about SCIs and paralysis. Visit us on the web at www.ibelieveinc.org. If you know someone living with paralysis (or you yourself are paralyzed), please share your thoughts with us. We’d love to help others promote their fundraising or events. After all, we are all working towards the same goal. Also, I’m asking all readers to please share our web site with others and provide feedback, ideas or questions.
I'm happy to announce that I'll be writing weekly blogs for I Believe Inc. on their website. I Believe Inc. is a non-profit organization, dedicated to raising awareness about spinal cord injuries (SCIs), improving the lives of people living with paralysis and supporting research for a cure. The organization was recently founded by my friend Rich Gaskin (better known as Professir X); with support from a small group of family, friends & fellow SCI advocates.
For those of you that might not have heard of “Professir X,” you can check out his website (http://www.myspace.com/pro
I Believe Incorporation’s philosophy is all about teamwork. I Believe Inc. has partnered up with similar non-profit organizations, to help one another unite and work together towards the goal of finding a cure to paralysis and improving quality of life. Just recently, I Believe Inc. received a “Quality of Life” grant from the Christopher & Dana Reeve Foundation and we are thrilled to be working alongside them. I Believe Inc. is also working with the National Spinal Cord Injury Association and helping to promote the “JustADollar” campaign (through the Rutgers University Foundation).
I’m so pleased to have been asked to be a part of I Believe Inc and hope you’ll join me, in helping to raise awareness about SCIs and paralysis. Visit us on the web at www.ibelieveinc.org. If you know someone living with paralysis (or you yourself are paralyzed), please share your thoughts with us. We’d love to help others promote their fundraising or events. After all, we are all working towards the same goal. Also, I’m asking all readers to please share our web site with others and provide feedback, ideas or questions.
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