I wrote this in my journal the other night & thought I'd share:
Tuesday, June 22, 2010
Waiting for my Wings
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"
Thursday, June 17, 2010
Regret & Forgiveness
I checked my website email account today and discovered a few new messages. One of the emails was from someone who had watched the episode of Soul Survivors that I did, on Youtube. He asked me if I often re-live (in my thoughts) the day of my accident and how I deal with regret. I thought they were great questions and want to share my response in the form of a blog, since I'm sure there are many other people out there that can relate.
Regret and forgiveness are two things I struggle with every day. I think the worst part about my accident (other than the consequences) is the fact that I did this to myself. I've experienced a lot of horrible things since that day. One of the worst things that happened right after my injury, was the fact that some of my closest friends and family made my situation worst for me, by arguing, accusing, blaming, judging and guilting me and one another. Everyone deals with grief and trauma differently and a lot of things that people in my life at the time, did and said, really shocked me. It is very true that people show their true colors, when you are at your lowest point. Some people soar and go above and beyond your wildest dreams and show you support and love you never expected. Other people shut down, close you out and disappoint you. The surprise comes in when people you've trusted your entire life let you down. They say love is unconditional, but I've learned that unfortunately, that is not always the case.
It has been incredibly hard for me to deal with all the loss and drastic changes that I've experienced. Many of the people that claim to love me, say it is sometimes equally painful (or so they think) for them, to see me suffer. The key difference is, I have no escape. I can't put my paralysis by the wayside when it gets too tough. I don't get to go back to my normal life or choose to remove myself from the situation. My family and friends have the choice to run from the situation, or at the very least, distance themselves, distract themselves or focus on other things. Some people might feel they're not strong enough to handle being in my life. For them, it is easier to dull the pain by turning a blind eye and remove themselves from the situation. At times, it upsets me, because I consider it selfish and cowardly. No matter how sad I am, how hard I try or desperate I might feel, I'm stuck. I either deal with it, or go mad. It's challenging to find strength, when people on the outside are not supportive. You can't help but think, "What's with them? They still have everything, just the same as before. They get to leave here and go on with there life." On the other hand, I suppose it's not fair of me to expect other people to put themselves through discomfort or drama, on my behalf. My family situation is tangled and broken, and added to the difficulty of my situation. My parents divorced when I was a baby and I've bounced back & forth between two families my entire life. The animosity and tension amongst my two families bubbled over after my injury and added a ton of extra stress and pain to my already horrible situation. Despite all the tears, anger and hurtful words, I've been able to forgive everyone, except myself. I guess this stems from the fact that I love my family and friends, but hate myself. It is easy to forgive someone you love, despite how much they hurt you; at least it is for me.
I've never had terriffic self esteem. I've always been hard on myself and much more critical of my own flaws, than the flaws of others. I think the perfectionist in me helped me to achieve a ton of positive things in my life, but it has certainly added anxiety and stress as well. It's very hard for me to be totally satisfied with what I do. I'm not competitive by nature, with other people, but I'm constantly striving to fit the vision inside my head (of myself, goals and aspirations). I've always pushed myself to strive for really high goals and try hard to achieve them. However, I managed to unravel all my hard and shatter my dreams in the matter of seconds. I destroyed everything I worked for with one very stupid mistake. The fact that my mistake seems so obviously idiotic, makes it all the harder to deal with and admit to the fact. Although a lot of people have told me I've made them proud (in how I've dealt with my paralysis), I'm a disappointment to myself.
I don't have any answers for myself, as to why I did what I did. Perhaps, if I had had some sort of plan in mind (like trying to do a shallow dive) and botched it, at least I'd be able to look at it as just being a mistake. However, I have no logical answer and I don't remember any specific intentions. I just dove in, blindly, without thinking. The frustrating part of it all, is that I never dove (as an adult). Swimming was one of the very few physical activities I enjoyed and looked forward to each year. I'd been swimming almost as long as I'd been walking. My family had above ground pools throughout my entire childhood and I was familiar with pool from my accident. I also had regular access (community pool and family) to in-ground pools growing up and as an adult. The last time I can remember ever diving head first into a pool, would've been before the age of eleven. I attended a pool party around that age, which turned me off from diving. Nothing particularly drastic happened at that party, I just recall it being the first time I felt afraid or thought I might hurt myself swimming. I vividly remember climbing the ladder to the high dive board, walking to the edge of the board, preparing to dive and chickening out last minute, to the annoyance of everyone behind me. I can't remember if I was forced to jump in, or if I climbed back down the ladder, but I never attempted a dive again, until the night of my accident.
I normally liked to jump into pools feet first or cannon ball style. The thought of getting accustomed to the water temperature inch, by inch, does not appeal to me. I much rather just take the plunge and be done with it all at once. I know I was feeling lazy the night of the accident and climbing up onto the side of the pool seemed the fastest way into the water. It would be no surprise to me if I would've chosen to jump into the pool, feet first and had broken my leg, stubbed my toes, or banged up my feet. That would make sense. That would sound like me. Diving in, head first, into sixty inches of water makes no sense and doesn't mesh with my character.
For a long time I beat myself up over the fact that I had been drinking that night. Those guilty (guilty of what, I'm not sure) feelings were only exacerbated by the blame and shame that was drilled into me, over and over again, during the first weeks after my accident. At my weakest point, my mistake was thrown back at me, time and time again and the story became exagerated and distorted. I was experiencing fevers 106 degrees and above, hallucinated and heavily drugged. I was living off of machines and was close to death. Despite all that was happening, I had to endure (some) my loved ones telling me how foolish I was and picking at every little flaw I had. I can remember feeling like dirt, here I was, beating myself up more than anyone, fighting to live, and yet certain people felt it necessary to make me feel worst. Aspects of my life were blown out of proportion and lies were made. I was weak, with cloudy thoughts and the desperation of not knowing what my life was going to be like. My loved ones were fighting and all I could do at that point was cry and try to make it seem like it would ok. I really believed that if I tried hard enough, I could heal myself and make up for my dumb mistake. Looking back, it all makes me very angry. I'm angry at myself, for not being stronger to stand my ground and be more in control of the situation, but at the time, my life had just dissolved in front of me and all I could think about was making it all right again.
Naturally, I think I'll always wonder how much the alcohol contributed to my decisions that night. I'll always wonder if those drinks influenced me to dive. I certainly wasn't falling down drunk, nor had I really felt drunk at the time. However from the minute I can remember waking up in the ER, that became the focus point of it all. The alcohol became the scapegoat as to why I dove and the guilt just piled on and on. It's only recently that I've forgiven myself a tiny bit over the fact that I had drank. At the time, I was twenty-four years old. I had bought my own drinks and had no intention of driving home that night. I only had had a few, and was obviously coordinated enough to scale the side of the pool and balance myself on top of the rim. It apparently had seemed shocking to some (obvious by their reactions), that a twenty four year old teacher might like to relax with friends and drink on the weekends. At the time, I let that guilt and shame eat away at me. Fortunately for my sanity, I've since realized that I was not an anomaly. Even now (pushing thirty), tons of my hardworking, educated, professional friends enjoy drinks on the weekends, have parties with friends and enjoy going out. I'm not exactly sure why I was made to feel like an ax murderer, for having a few drinks, but I was. I was balancing a lot of things that year and did stretch myself too thin at times, but that's hardly a crime. I take comfort in the fact that I know I had my life on track (it's easy to judge, when you only see one piece of the puzzle) and had accomplished a lot of things in my life that I'm still proud of. I no longer feel wrong for drinking, however much or little. I could sit here all day and list specific regrets for that day (changing our plans, going to the party, planning to swim, drinking, diving), but it's only because it's in hindsight and because of the overall consequence of the chain of events. I regret drinking because I'll always have that doubt over what role it played that night. I haven't had a sip of liquor since and made a promise to myself to never drink again; not because it's wrong or evil, but because I don't want to ever feel like I'm not 100% in control of my thoughts and decision making.
Drinking is just one of many regretful decisions I made that day. However, I only regret them because of what happened. Any other time, I wouldn't have regretted planning to swim; I'd swum at night before. I wouldn't normally regret the fact that we (me and my ex-boyfriend) had decided to go to the party last minute, instead of just staying home. I'd been swimming a million times before, had drank alcohol and had been to plenty of parties before that night, and had had a fun time and life continued on as usual. I'm sure millions of Americans will enjoy barbecues, drinking and swimming this summer without a problem. In fact, millions of people will do extremely risky things, like ride motorcycles, extreme sports, cliff diving, jump on trampolines, or just silly stunts for fun, and they will get hurt and walk away. Then there's the few thousand people that will get hurt and never walk again. For what ever reason, I was one of those thousand people, in the summer of 2005.
Since my injury, I see the world from an entirely different perspective. I see things on tv or when I go out, that make me cringe, because I know how close that person was to ending up like me. I watch shows like "World's Dumbest...Videos" and I'm just flabbergasted by the things I see people do on purpose and with a specific intent (One example, is a man sets a ladder up against his neighbor's tree, attempts to jump over his fence and land on his pool cover, but gets his foot caught on a rung on the way down and falls on the cement. Another example, is a boy that decided to ride his bicycle off the roof of his house, into a pile of snow down below.) and not only survive, but get up and walk away. At times, it makes me frustrated and angry when I see people do something similar to me or worst, and nothing happens. In fact, in the typical irony to my life, I watched (and recorded) a commercial the other day for Branchburg Pools, in which the salesman dives head first into a similar above ground pool and pops right back up to continue his sales pitch. Don't get me wrong, I don't want to see the other people paralyzed; I just can't help but think, "Why I am so different? Why didn't I pop back up? Why couldn't I walk away?" I certainly can't answer those questions, nor can anyone else.
Having no answers as to why I chose to do what I did, or reason as to why I have to pay such a high price, is extremely difficult to deal with. Given the fact that I was the one that ultimately dove (regardless of any outside contributing factors) into the pool, makes it near impossible to forgive myself. Especially given the fact, that I was an experienced swimmer and have no clear explanation as to what I was trying to do. Did I think I could shallow dive the length of the pool? Did I miscalculate the depth, because I couldn't see the bottom clearly? I'll never know for sure, but I will always regret the choice. The next question is, how do you forgive someone that ruined your life (stole your freedom, took your independence, robbed you of relationships, ended your career and in essence, killed a part of you.)? More importantly, what if you are that person? It's been five years, and I've yet to come up with any solutions. I just continue to try to do the best I can.
- Posted using BlogPress from my iPhone
Regret and forgiveness are two things I struggle with every day. I think the worst part about my accident (other than the consequences) is the fact that I did this to myself. I've experienced a lot of horrible things since that day. One of the worst things that happened right after my injury, was the fact that some of my closest friends and family made my situation worst for me, by arguing, accusing, blaming, judging and guilting me and one another. Everyone deals with grief and trauma differently and a lot of things that people in my life at the time, did and said, really shocked me. It is very true that people show their true colors, when you are at your lowest point. Some people soar and go above and beyond your wildest dreams and show you support and love you never expected. Other people shut down, close you out and disappoint you. The surprise comes in when people you've trusted your entire life let you down. They say love is unconditional, but I've learned that unfortunately, that is not always the case.
It has been incredibly hard for me to deal with all the loss and drastic changes that I've experienced. Many of the people that claim to love me, say it is sometimes equally painful (or so they think) for them, to see me suffer. The key difference is, I have no escape. I can't put my paralysis by the wayside when it gets too tough. I don't get to go back to my normal life or choose to remove myself from the situation. My family and friends have the choice to run from the situation, or at the very least, distance themselves, distract themselves or focus on other things. Some people might feel they're not strong enough to handle being in my life. For them, it is easier to dull the pain by turning a blind eye and remove themselves from the situation. At times, it upsets me, because I consider it selfish and cowardly. No matter how sad I am, how hard I try or desperate I might feel, I'm stuck. I either deal with it, or go mad. It's challenging to find strength, when people on the outside are not supportive. You can't help but think, "What's with them? They still have everything, just the same as before. They get to leave here and go on with there life." On the other hand, I suppose it's not fair of me to expect other people to put themselves through discomfort or drama, on my behalf. My family situation is tangled and broken, and added to the difficulty of my situation. My parents divorced when I was a baby and I've bounced back & forth between two families my entire life. The animosity and tension amongst my two families bubbled over after my injury and added a ton of extra stress and pain to my already horrible situation. Despite all the tears, anger and hurtful words, I've been able to forgive everyone, except myself. I guess this stems from the fact that I love my family and friends, but hate myself. It is easy to forgive someone you love, despite how much they hurt you; at least it is for me.
I've never had terriffic self esteem. I've always been hard on myself and much more critical of my own flaws, than the flaws of others. I think the perfectionist in me helped me to achieve a ton of positive things in my life, but it has certainly added anxiety and stress as well. It's very hard for me to be totally satisfied with what I do. I'm not competitive by nature, with other people, but I'm constantly striving to fit the vision inside my head (of myself, goals and aspirations). I've always pushed myself to strive for really high goals and try hard to achieve them. However, I managed to unravel all my hard and shatter my dreams in the matter of seconds. I destroyed everything I worked for with one very stupid mistake. The fact that my mistake seems so obviously idiotic, makes it all the harder to deal with and admit to the fact. Although a lot of people have told me I've made them proud (in how I've dealt with my paralysis), I'm a disappointment to myself.
I don't have any answers for myself, as to why I did what I did. Perhaps, if I had had some sort of plan in mind (like trying to do a shallow dive) and botched it, at least I'd be able to look at it as just being a mistake. However, I have no logical answer and I don't remember any specific intentions. I just dove in, blindly, without thinking. The frustrating part of it all, is that I never dove (as an adult). Swimming was one of the very few physical activities I enjoyed and looked forward to each year. I'd been swimming almost as long as I'd been walking. My family had above ground pools throughout my entire childhood and I was familiar with pool from my accident. I also had regular access (community pool and family) to in-ground pools growing up and as an adult. The last time I can remember ever diving head first into a pool, would've been before the age of eleven. I attended a pool party around that age, which turned me off from diving. Nothing particularly drastic happened at that party, I just recall it being the first time I felt afraid or thought I might hurt myself swimming. I vividly remember climbing the ladder to the high dive board, walking to the edge of the board, preparing to dive and chickening out last minute, to the annoyance of everyone behind me. I can't remember if I was forced to jump in, or if I climbed back down the ladder, but I never attempted a dive again, until the night of my accident.
I normally liked to jump into pools feet first or cannon ball style. The thought of getting accustomed to the water temperature inch, by inch, does not appeal to me. I much rather just take the plunge and be done with it all at once. I know I was feeling lazy the night of the accident and climbing up onto the side of the pool seemed the fastest way into the water. It would be no surprise to me if I would've chosen to jump into the pool, feet first and had broken my leg, stubbed my toes, or banged up my feet. That would make sense. That would sound like me. Diving in, head first, into sixty inches of water makes no sense and doesn't mesh with my character.
For a long time I beat myself up over the fact that I had been drinking that night. Those guilty (guilty of what, I'm not sure) feelings were only exacerbated by the blame and shame that was drilled into me, over and over again, during the first weeks after my accident. At my weakest point, my mistake was thrown back at me, time and time again and the story became exagerated and distorted. I was experiencing fevers 106 degrees and above, hallucinated and heavily drugged. I was living off of machines and was close to death. Despite all that was happening, I had to endure (some) my loved ones telling me how foolish I was and picking at every little flaw I had. I can remember feeling like dirt, here I was, beating myself up more than anyone, fighting to live, and yet certain people felt it necessary to make me feel worst. Aspects of my life were blown out of proportion and lies were made. I was weak, with cloudy thoughts and the desperation of not knowing what my life was going to be like. My loved ones were fighting and all I could do at that point was cry and try to make it seem like it would ok. I really believed that if I tried hard enough, I could heal myself and make up for my dumb mistake. Looking back, it all makes me very angry. I'm angry at myself, for not being stronger to stand my ground and be more in control of the situation, but at the time, my life had just dissolved in front of me and all I could think about was making it all right again.
Naturally, I think I'll always wonder how much the alcohol contributed to my decisions that night. I'll always wonder if those drinks influenced me to dive. I certainly wasn't falling down drunk, nor had I really felt drunk at the time. However from the minute I can remember waking up in the ER, that became the focus point of it all. The alcohol became the scapegoat as to why I dove and the guilt just piled on and on. It's only recently that I've forgiven myself a tiny bit over the fact that I had drank. At the time, I was twenty-four years old. I had bought my own drinks and had no intention of driving home that night. I only had had a few, and was obviously coordinated enough to scale the side of the pool and balance myself on top of the rim. It apparently had seemed shocking to some (obvious by their reactions), that a twenty four year old teacher might like to relax with friends and drink on the weekends. At the time, I let that guilt and shame eat away at me. Fortunately for my sanity, I've since realized that I was not an anomaly. Even now (pushing thirty), tons of my hardworking, educated, professional friends enjoy drinks on the weekends, have parties with friends and enjoy going out. I'm not exactly sure why I was made to feel like an ax murderer, for having a few drinks, but I was. I was balancing a lot of things that year and did stretch myself too thin at times, but that's hardly a crime. I take comfort in the fact that I know I had my life on track (it's easy to judge, when you only see one piece of the puzzle) and had accomplished a lot of things in my life that I'm still proud of. I no longer feel wrong for drinking, however much or little. I could sit here all day and list specific regrets for that day (changing our plans, going to the party, planning to swim, drinking, diving), but it's only because it's in hindsight and because of the overall consequence of the chain of events. I regret drinking because I'll always have that doubt over what role it played that night. I haven't had a sip of liquor since and made a promise to myself to never drink again; not because it's wrong or evil, but because I don't want to ever feel like I'm not 100% in control of my thoughts and decision making.
Drinking is just one of many regretful decisions I made that day. However, I only regret them because of what happened. Any other time, I wouldn't have regretted planning to swim; I'd swum at night before. I wouldn't normally regret the fact that we (me and my ex-boyfriend) had decided to go to the party last minute, instead of just staying home. I'd been swimming a million times before, had drank alcohol and had been to plenty of parties before that night, and had had a fun time and life continued on as usual. I'm sure millions of Americans will enjoy barbecues, drinking and swimming this summer without a problem. In fact, millions of people will do extremely risky things, like ride motorcycles, extreme sports, cliff diving, jump on trampolines, or just silly stunts for fun, and they will get hurt and walk away. Then there's the few thousand people that will get hurt and never walk again. For what ever reason, I was one of those thousand people, in the summer of 2005.
Since my injury, I see the world from an entirely different perspective. I see things on tv or when I go out, that make me cringe, because I know how close that person was to ending up like me. I watch shows like "World's Dumbest...Videos" and I'm just flabbergasted by the things I see people do on purpose and with a specific intent (One example, is a man sets a ladder up against his neighbor's tree, attempts to jump over his fence and land on his pool cover, but gets his foot caught on a rung on the way down and falls on the cement. Another example, is a boy that decided to ride his bicycle off the roof of his house, into a pile of snow down below.) and not only survive, but get up and walk away. At times, it makes me frustrated and angry when I see people do something similar to me or worst, and nothing happens. In fact, in the typical irony to my life, I watched (and recorded) a commercial the other day for Branchburg Pools, in which the salesman dives head first into a similar above ground pool and pops right back up to continue his sales pitch. Don't get me wrong, I don't want to see the other people paralyzed; I just can't help but think, "Why I am so different? Why didn't I pop back up? Why couldn't I walk away?" I certainly can't answer those questions, nor can anyone else.
Having no answers as to why I chose to do what I did, or reason as to why I have to pay such a high price, is extremely difficult to deal with. Given the fact that I was the one that ultimately dove (regardless of any outside contributing factors) into the pool, makes it near impossible to forgive myself. Especially given the fact, that I was an experienced swimmer and have no clear explanation as to what I was trying to do. Did I think I could shallow dive the length of the pool? Did I miscalculate the depth, because I couldn't see the bottom clearly? I'll never know for sure, but I will always regret the choice. The next question is, how do you forgive someone that ruined your life (stole your freedom, took your independence, robbed you of relationships, ended your career and in essence, killed a part of you.)? More importantly, what if you are that person? It's been five years, and I've yet to come up with any solutions. I just continue to try to do the best I can.
- Posted using BlogPress from my iPhone
Wednesday, June 9, 2010
Acceptance
I often read posts from the Care Cure & Christopher and Dana Reeve Foundation forums. Both websites are dedicated to spinal cord injury and paralysis awareness and research towards finding a cure. Both websites also have active online communities of people living with paralysis, caregivers and medical & mental health professionals. It's helpful to be able to read how other people deal with paralysis and know that there are other people that can understand your situation. I contribute my opinion, information and advice from time to time. I'd encourage anyone effected by paralysis to check out both websites.
The other day a person with a C6-C7 injury posted a question that caught my attention. This person was injured nine months ago, and wanted to know how other people cope with their injuries. Specifically, he asked, "those of you that are years out, when did you (if you did) come to terms with your new self? How long did it take for the emotional pain to subside?"
I didn't really ask myself this question until much later in my "recovery." I think I was in complete denial that I wouldn't "get better" for at least a year after my accident. Even now, a part of me wants to reject my "new self." Acknowledging this is it, means admitting that I won't ever get better. That is a hard pill to swallow. My way of "coming to terms" with reality is to essentially grieve for myself. I grieve over the loss of the "old Christina" and try to make the best out of the "Christina" that was left behind. That might sound bizarre to some people, but when every aspect of your life is turned completely upside down, you can't help but feel a sharp divide. One day you're independent, the next day you're dependent. The easiest way for me to deal with my life now, is to not constantly harbor on the past. That life is gone.
I decided to respond to the question about acceptance, because it is something I'm still struggling over today. I'm not so sure I want to accept this life. Here is what I wrote:
I think "acceptance" might not mean the same thing to everyone. When I think of that word, I always think of validation and surrender. On one hand, I acknowledge the fact that my life has changed (C5 complete, 6/5/05) and I recognize that the chances of me ever being "cured" are slim, to none. On the other hand, I will never be satisfied with this life and will fight to change as much as I can. A lot of people use the word acceptance to express being at peace with their situation or the fact that they have given up hope for anything better.
I'm a realist, so I know I'll probably spend the rest of my life in a chair. However, I feel like the moment I accept that this is it, that I'd be giving up hope. Without hope, I'd have no reason to try to keep moving forward. We've been dealt a really crap luck hand of cards and no matter how you look at it, it's always going to be crap, unless something changes. We can choose to do what we can to improve the situation we've been handed and make the best of it, or we can just accept it for what it is and leave it at that. If you accept someone, or something, you are essentially saying, "you/it are/is fine the way it are/is." Some people have learned how to accept their injuries and still move forward (reality is, life moves forward with, or without you) and are content. I will never be content living with paralysis.
It's horrible, what we go through and how we have to live. I wouldn't wish paralysis on anyone. Every adult human being should have the basic freedom of being able to care for themselves and privacy, for modesty. Paralysis steals both of those basic human rights, in addition to the pain & suffering due to all the other aspects of life that change or are lost altogether (physical talents, careers, material possessions, dreams, intimacy, life without medication, relationships, etc.).
No one should have to endure all of the loss and suffering that paralysis can cause. I can understand and accept losing abilities or senses gradually, with age. There are a lot of elderly people that require assistance, but the difference is that they were fortunate enough to live full, "normal" lives. If I were eighty or ninety years old, I'd be able to accept needing help. It's natural to lose or experience a decline in abilities, strengths and senses as part of aging, and getting older. Paralysis is so awful because it steals all that and more, in the matter of seconds. People that suffer a spinal cord injury aren't given a lifetime to deal with gradual change. Paralysis forces you to cope with a lifetime's worth of loss (not even, because there are tons of relatively healthy people in the eighties and up) overnight and robs you of the future you planned.
Another one of the worst aspects of spinal cord injuries is that they are completely random. There are no genetic markers, family history or warning symptoms to an injury. Anyone can get injured at any time and the results/recovery are often just as unpredictable a the injury itself. There is no full proof way to avoid injury and everybody's spinal cord injury is entirely unique to their physiology and the exact way they are injured. In fact, I'm always reminded of this man Gene, that was in rehab with me, at Kessler. Gene had been a fire fighter in NYC. One night, he and five other fire fighters were forced to jump out of a five story building (or be burnt to death). Two of those men died at the scene, while four survived. Obviously, Gene was among the four survivors. He was the last of his group to leave rehab after having survived the fifty foot plus fall, a coma and about eight months of therapy. On his last day of therapy, Gene walked out of Kessler with a cane.I can remember watching him leave, in disbelief. I recall feeling happy for him and jealous of him at the same time. It made no sense to me, how a man could walk after falling five stories and yet, doctors were telling me it was impossible for me to do the same. Contrarily to Gene, I broke my neck in a failed attempt to shallow dive in a swimming pool. I dove from about five and a half feet off the ground. I only spent three months at Kessler and left in a head controlled wheelchair. There is no rhyme or reason when it comes to spinal cord injuries. That is why I feel it is so important to teach people about paralysis. People need to understand how difficult it is to live with paralysis and recognize the fact that they can be injured just as easily, and unpredictably as we were.
It's insanely frustrating that doctors (the scientific community as a whole) still have little to offer in terms of a cure or recovery. It makes me angry and sad to know that right now, someone could be getting injured and doctors won't be able to help that person, any more than they helped me five years ago. It's sometimes baffling to me how far humanity has come and yet, we still have failed to figure out all there is to know about our own bodies. You can't help but want to lash out, at times, over how absurd it all seems and how messed up our priorities seem to be. Scientists say a cure is possible. Since I've been injured, I've heard and read the magic time span of five to ten years, over and over again. Unfortunately, people with injuries decades older than mine have been hearing, hoping and waiting for the same results, for much longer. It makes me sick when I hear researchers say it's just a matter of funding and policies (keep in mind, every country has it's own set of priorities and regulations).The thought that I could be cured (or that I might have never had to endure all that I have the past five years) if it weren't for lack of money and support, makes me want to scream.
At times, I get so fed up and just wish there was someone to give me answers. It all seems so unfair and hard to understand why more isn't being done. Research towards understanding and repairing the central nervous system is promising and on-going, but moving at a snail's pace. Our spinal cord and brains are the most important parts of our body (also extremely complex) and unlocking the keys to repairing damage, would have huge practical applications and alleviate tremendous suffering (even save on spending, in the long run). So why is it that we spend more money on detrimental things, like war and oil? How can our government thinks it's ok to invest billions of dollars to search for microbes in space, while he have millions of people suffering here on Earth? Many of the world's brightest minds are focused on questions of curiosity, versus questions of necessity. While fascinating, I fail to see what practical information that (most of) our space program can hope to provide. It seems like common sense, that humanity would want to understand all there is to know about ourselves, before wasting brainpower and time on other topics.
Sometimes I wonder if our society is the way it is, due to ignorance. Logic tells me that our priorities as a country, stem mostly from greed and selfishness. I think the rest of society just doesn't think about something, unless it effects them personally, or it's constantly in their face. So often I feel like people need to be hit over the head, before they'll pay attention. The majority of people are so self absorbed that it's hard for them to see the bigger picture. I always joke that its as if I see the world through a pair of one hundred year old eyes. Before my accident, I was guilty of being caught up in material things and had a totally different perspective on life. I stressed over stupid, insignificant things and didn't realize how blessed I was. I'd like to think of myself as a kind, helpful person, but before my accident, there was a lot of wonderful things I took for granted. In general, people need to be reminded and need some kind of emotional connection to really care about and support a cause. The out pour of aide and money that went to Haiti the first few weeks after their horrific earthquake is one example, of the potential support people are willing to give, if it touches their heart.
Right now, the support for paralysis research is not enough, especially when you look at diseases like AIDS and Cancer, and compare the amount of support that is generated for those illnesses. I think it's our job (for our own sake as well as others) to be out there, reminding people and/or teaching people about paralysis. It shouldn't have to take a celebrity to raise awareness. Part of the problem is that not enough people are exposed to disabilities, know someone with a severe disability or realize how quickly their life can change. I believe if more people really understood what paralysis is like, that there would be more support towards finding a cure. Naturally, a cure to paralysis would mean wiping out a ton of diseases and disabilities(ALS, MS, MD, Parkinson's, CP, etc.), and would effect millions more than just people with spinal cord injuries.
I can't imagine that my sadness, anger or frustration will ever really go away. I've just learned to channel my feelings into something productive (when I can) and try to find purpose in it all. I also think it's perfectly normal to have up and down days. I'm sure if you think back to your old life, you had your share of bad days too. I often feel like I've been given an impossible task. Although people try their best to be supportive, unless they've lived with paralysis, it's near impossible for them to truly understand. Other people will offer you a ton of advice and try to cheer you up. People mean well, but only you know yourself best. You have to find your own reasons for wanting to keep moving forward. I've gotten better at dealing with certain things over time, but find it hard to believe I'll ever be satisfied or happy in my situation. Don't get me wrong, I still have things to be grateful for and things that make me happy, but it's always bittersweet.
I just take it one day at a time & try to give myself purpose. My family and friends are one reason I try to keep going forward. My hope for a cure is my second reason and my desire to salvage something positive from my accident is my third reason. For right now, those three reasons are enough. If my SCI has taught me anything, it's how fragile life is and how little control we ultimately have over our lives. I still struggle with the past, although I know I can't change it; I miss it. I try not to think ahead too far into the future, because I know how quickly things can change. I set loose goals for myself and take things as they come, day by day. Tomorrow my reasons to keep going might not be enough, or I might find even more. Who knows? Just do your best; that's all you can expect from yourself.
Right now, your quality of life rests heavily on your own choices. You have more power to improve your state of mind and/or your situation than anyone else. I have a website, dedicated to SCI & paralysis awareness. It's not a big deal, or anything, it's just one of my attempts at reaching out to others. It makes me feel good, to do things to raise awareness, even if it's small. It's important to me to feel like I'm doing something productive and that I'm contributing towards a cure. If you're interested, check it out. I hope my advice helps a little.
Sent from my iPad
- Posted using BlogPress from my iPhone
The other day a person with a C6-C7 injury posted a question that caught my attention. This person was injured nine months ago, and wanted to know how other people cope with their injuries. Specifically, he asked, "those of you that are years out, when did you (if you did) come to terms with your new self? How long did it take for the emotional pain to subside?"
I didn't really ask myself this question until much later in my "recovery." I think I was in complete denial that I wouldn't "get better" for at least a year after my accident. Even now, a part of me wants to reject my "new self." Acknowledging this is it, means admitting that I won't ever get better. That is a hard pill to swallow. My way of "coming to terms" with reality is to essentially grieve for myself. I grieve over the loss of the "old Christina" and try to make the best out of the "Christina" that was left behind. That might sound bizarre to some people, but when every aspect of your life is turned completely upside down, you can't help but feel a sharp divide. One day you're independent, the next day you're dependent. The easiest way for me to deal with my life now, is to not constantly harbor on the past. That life is gone.
I decided to respond to the question about acceptance, because it is something I'm still struggling over today. I'm not so sure I want to accept this life. Here is what I wrote:
I think "acceptance" might not mean the same thing to everyone. When I think of that word, I always think of validation and surrender. On one hand, I acknowledge the fact that my life has changed (C5 complete, 6/5/05) and I recognize that the chances of me ever being "cured" are slim, to none. On the other hand, I will never be satisfied with this life and will fight to change as much as I can. A lot of people use the word acceptance to express being at peace with their situation or the fact that they have given up hope for anything better.
I'm a realist, so I know I'll probably spend the rest of my life in a chair. However, I feel like the moment I accept that this is it, that I'd be giving up hope. Without hope, I'd have no reason to try to keep moving forward. We've been dealt a really crap luck hand of cards and no matter how you look at it, it's always going to be crap, unless something changes. We can choose to do what we can to improve the situation we've been handed and make the best of it, or we can just accept it for what it is and leave it at that. If you accept someone, or something, you are essentially saying, "you/it are/is fine the way it are/is." Some people have learned how to accept their injuries and still move forward (reality is, life moves forward with, or without you) and are content. I will never be content living with paralysis.
It's horrible, what we go through and how we have to live. I wouldn't wish paralysis on anyone. Every adult human being should have the basic freedom of being able to care for themselves and privacy, for modesty. Paralysis steals both of those basic human rights, in addition to the pain & suffering due to all the other aspects of life that change or are lost altogether (physical talents, careers, material possessions, dreams, intimacy, life without medication, relationships, etc.).
No one should have to endure all of the loss and suffering that paralysis can cause. I can understand and accept losing abilities or senses gradually, with age. There are a lot of elderly people that require assistance, but the difference is that they were fortunate enough to live full, "normal" lives. If I were eighty or ninety years old, I'd be able to accept needing help. It's natural to lose or experience a decline in abilities, strengths and senses as part of aging, and getting older. Paralysis is so awful because it steals all that and more, in the matter of seconds. People that suffer a spinal cord injury aren't given a lifetime to deal with gradual change. Paralysis forces you to cope with a lifetime's worth of loss (not even, because there are tons of relatively healthy people in the eighties and up) overnight and robs you of the future you planned.
Another one of the worst aspects of spinal cord injuries is that they are completely random. There are no genetic markers, family history or warning symptoms to an injury. Anyone can get injured at any time and the results/recovery are often just as unpredictable a the injury itself. There is no full proof way to avoid injury and everybody's spinal cord injury is entirely unique to their physiology and the exact way they are injured. In fact, I'm always reminded of this man Gene, that was in rehab with me, at Kessler. Gene had been a fire fighter in NYC. One night, he and five other fire fighters were forced to jump out of a five story building (or be burnt to death). Two of those men died at the scene, while four survived. Obviously, Gene was among the four survivors. He was the last of his group to leave rehab after having survived the fifty foot plus fall, a coma and about eight months of therapy. On his last day of therapy, Gene walked out of Kessler with a cane.I can remember watching him leave, in disbelief. I recall feeling happy for him and jealous of him at the same time. It made no sense to me, how a man could walk after falling five stories and yet, doctors were telling me it was impossible for me to do the same. Contrarily to Gene, I broke my neck in a failed attempt to shallow dive in a swimming pool. I dove from about five and a half feet off the ground. I only spent three months at Kessler and left in a head controlled wheelchair. There is no rhyme or reason when it comes to spinal cord injuries. That is why I feel it is so important to teach people about paralysis. People need to understand how difficult it is to live with paralysis and recognize the fact that they can be injured just as easily, and unpredictably as we were.
It's insanely frustrating that doctors (the scientific community as a whole) still have little to offer in terms of a cure or recovery. It makes me angry and sad to know that right now, someone could be getting injured and doctors won't be able to help that person, any more than they helped me five years ago. It's sometimes baffling to me how far humanity has come and yet, we still have failed to figure out all there is to know about our own bodies. You can't help but want to lash out, at times, over how absurd it all seems and how messed up our priorities seem to be. Scientists say a cure is possible. Since I've been injured, I've heard and read the magic time span of five to ten years, over and over again. Unfortunately, people with injuries decades older than mine have been hearing, hoping and waiting for the same results, for much longer. It makes me sick when I hear researchers say it's just a matter of funding and policies (keep in mind, every country has it's own set of priorities and regulations).The thought that I could be cured (or that I might have never had to endure all that I have the past five years) if it weren't for lack of money and support, makes me want to scream.
At times, I get so fed up and just wish there was someone to give me answers. It all seems so unfair and hard to understand why more isn't being done. Research towards understanding and repairing the central nervous system is promising and on-going, but moving at a snail's pace. Our spinal cord and brains are the most important parts of our body (also extremely complex) and unlocking the keys to repairing damage, would have huge practical applications and alleviate tremendous suffering (even save on spending, in the long run). So why is it that we spend more money on detrimental things, like war and oil? How can our government thinks it's ok to invest billions of dollars to search for microbes in space, while he have millions of people suffering here on Earth? Many of the world's brightest minds are focused on questions of curiosity, versus questions of necessity. While fascinating, I fail to see what practical information that (most of) our space program can hope to provide. It seems like common sense, that humanity would want to understand all there is to know about ourselves, before wasting brainpower and time on other topics.
Sometimes I wonder if our society is the way it is, due to ignorance. Logic tells me that our priorities as a country, stem mostly from greed and selfishness. I think the rest of society just doesn't think about something, unless it effects them personally, or it's constantly in their face. So often I feel like people need to be hit over the head, before they'll pay attention. The majority of people are so self absorbed that it's hard for them to see the bigger picture. I always joke that its as if I see the world through a pair of one hundred year old eyes. Before my accident, I was guilty of being caught up in material things and had a totally different perspective on life. I stressed over stupid, insignificant things and didn't realize how blessed I was. I'd like to think of myself as a kind, helpful person, but before my accident, there was a lot of wonderful things I took for granted. In general, people need to be reminded and need some kind of emotional connection to really care about and support a cause. The out pour of aide and money that went to Haiti the first few weeks after their horrific earthquake is one example, of the potential support people are willing to give, if it touches their heart.
Right now, the support for paralysis research is not enough, especially when you look at diseases like AIDS and Cancer, and compare the amount of support that is generated for those illnesses. I think it's our job (for our own sake as well as others) to be out there, reminding people and/or teaching people about paralysis. It shouldn't have to take a celebrity to raise awareness. Part of the problem is that not enough people are exposed to disabilities, know someone with a severe disability or realize how quickly their life can change. I believe if more people really understood what paralysis is like, that there would be more support towards finding a cure. Naturally, a cure to paralysis would mean wiping out a ton of diseases and disabilities(ALS, MS, MD, Parkinson's, CP, etc.), and would effect millions more than just people with spinal cord injuries.
I can't imagine that my sadness, anger or frustration will ever really go away. I've just learned to channel my feelings into something productive (when I can) and try to find purpose in it all. I also think it's perfectly normal to have up and down days. I'm sure if you think back to your old life, you had your share of bad days too. I often feel like I've been given an impossible task. Although people try their best to be supportive, unless they've lived with paralysis, it's near impossible for them to truly understand. Other people will offer you a ton of advice and try to cheer you up. People mean well, but only you know yourself best. You have to find your own reasons for wanting to keep moving forward. I've gotten better at dealing with certain things over time, but find it hard to believe I'll ever be satisfied or happy in my situation. Don't get me wrong, I still have things to be grateful for and things that make me happy, but it's always bittersweet.
I just take it one day at a time & try to give myself purpose. My family and friends are one reason I try to keep going forward. My hope for a cure is my second reason and my desire to salvage something positive from my accident is my third reason. For right now, those three reasons are enough. If my SCI has taught me anything, it's how fragile life is and how little control we ultimately have over our lives. I still struggle with the past, although I know I can't change it; I miss it. I try not to think ahead too far into the future, because I know how quickly things can change. I set loose goals for myself and take things as they come, day by day. Tomorrow my reasons to keep going might not be enough, or I might find even more. Who knows? Just do your best; that's all you can expect from yourself.
Right now, your quality of life rests heavily on your own choices. You have more power to improve your state of mind and/or your situation than anyone else. I have a website, dedicated to SCI & paralysis awareness. It's not a big deal, or anything, it's just one of my attempts at reaching out to others. It makes me feel good, to do things to raise awareness, even if it's small. It's important to me to feel like I'm doing something productive and that I'm contributing towards a cure. If you're interested, check it out. I hope my advice helps a little.
Sent from my iPad
- Posted using BlogPress from my iPhone
Sunday, May 16, 2010
Slacker
Lately I've been feeling like a complete slacker. Mostly because I have painted in a while, and have nothing concrete planned. It's important to me to feel like I'm contributing to society, especially now, since I'm no longer teaching. I want to be working. I miss my job terribly. Sometimes I think teaching full time, on an elementary school schedule would be near impossible for me, in my condition. On the other hand, I'm confident that I could still do my job, if I had the assistance I needed. Realistically, I'm just not sure that I'd have the health or stamina to handle a forty (more like sixty) hour work week. So I've tried my best to compromise and still feel like I'm giving something. I never want to feel like I'm just leeching off the system. There are already too many people out there that choose to be selfish and lazy and abuse the system. That's not me.
The past two years I've had something to prepare for, every couple of months. Starting with the fundraiser, I sat for several newspaper interviews, did several online interviews, prepared for the three exhibits, painted for MFPA, went to an artist forum & did the two television shows. Now that it's all finished, I feel like I'm just sitting around. Part of the problem is the fact that I just don't feel well a lot of the time. My tolerance for the chair has been weakened, ever since I had that really bad bedsore on my upper thigh. After three or four hours I often feel feverish, have the chills or this weird tingly sensation I attribute to my catheter being pinched, or going to the bathroom. Either way, they are uncomfortable symptoms that often have no visible cause. I think it's just my body's way of letting me know I need to lay down. During the past six months or so, I've also been dealing with mysterious chest pains. It's not so much pain, as it is discomfort, but it is very annoying and makes it hard to relax. It started out as a tightness in between my ribcage and has since migrated to my left breast. At times, it feels like I have a huge boulder on top of the area. Other days, it feels like a giant is squeezing me with all its might. The worst is when it combines with my neck/shoulder pain. Most recently, I've been getting a throbbing pain all through my back, especially in my lower back. It's all very odd and frustrating, because I can't feel the exterior; I only feel the interior. Could I really be feeling my bones and muscles? I doubt it. Regardless, I've had all kinds of tests done in hopes of finding a cause and haven't had any luck. All my major organs are fine. My breathing is good and my blood work is fine. That leaves me with, "it could be stress or neurological pain." Great.
Long story short, is that I've been staying in bed quite a bit, these past six months or so. Mostly because I don't feel it's worth getting up, if I'm only going to feel crappy and crave being in bed the whole time. My painting has taken a back seat, as it is the one thing I can't do in bed. Even when I do get up, it's so few and far between that I usually don't feel like using the time to paint. However, then I feel guilty, like I'm being lazy. I have ideas ready; I just need to get started. It's especially hard to force myself when I know I don't have a set deadline or schedule. The shows kept me motivated. On the other hand, I start to think, if I got my butt in gear and painted more, I'd have more work to potentially exhibit. Instead, I've been trying to work on my website and I got some really nice color business cards printed up. I thought it would be more professional and an easy way to share my information. They're a custom design with one on my paintings on the front, along with my website address and a statistic about spinal cord injuries on the reverse side. Luckily, there are a million ways to promote yourself and/or a cause using the internet. I plan to continue working on computer stuff, but I really do need a push to paint!
In efforts of motivating myself, signed up to participate in something.called "the sketchbook project." It's run by a group called the "arthouse co-op, out of The Brooklyn Art Library. I just happened to click on a Facebook ad for it the other night, because it looked interesting. Basically, you sign up, they send you a sketchbook, you fill it & send it back. All of the sketchbooks then go on to exhibitions as part of a cross country tour. Each sketchbook gets abarcode, which can be used to track the book & see if people looked at it. The tour includes exhibits in a bunch of major cities: Brooklyn, NY Austin, TX San Francisco, CA Portland, MEAtlanta, GA &Chicago, IL. Once it's over, people will be able to look at them in the Brooklyn Art Library. I also paid a small extra fee, for the book to be digitized and added to an online library. It sounds like a really cool idea and I'm excited about participating. All I have to do is choose a theme, use the book & not change it's dimensions. I chose the theme "Help!" I thought it was perfect for the purpose of advocacy. I plan on making my sketchbook about paralysis and my hope for a cure. The cool thing is, I can sketch everything on my iPad and then print and transfer them to the book. So staying in bed is no excuse! It'll be interesting to document my progress and follow the book, on its travels. I'll definitely blog about it once I get started.
Speaking of blogs, I had read this article about a paralyzed pro gamer (Randy) & thought it would make for an interesting blog, if I could interview him. I took a chance & contacted him through his youtube site. He agreed & most likely I'll be talking to him soon, through Skype.It'll be cool to compare notes with Randy & hopefully make an interesting blog. I'm sure there are people out there that think they can't play video games, because of physical disabilities. I'm hoping by sharing mine and Randy's techniques and stories we can inspire some new gamers. I've always been into gaming, but it's been especially helpful in coping with my situation. Gaming provides a much needed escape and source of enjoyment.
Long story short, is that I've been staying in bed quite a bit, these past six months or so. Mostly because I don't feel it's worth getting up, if I'm only going to feel crappy and crave being in bed the whole time. My painting has taken a back seat, as it is the one thing I can't do in bed. Even when I do get up, it's so few and far between that I usually don't feel like using the time to paint. However, then I feel guilty, like I'm being lazy. I have ideas ready; I just need to get started. It's especially hard to force myself when I know I don't have a set deadline or schedule. The shows kept me motivated. On the other hand, I start to think, if I got my butt in gear and painted more, I'd have more work to potentially exhibit. Instead, I've been trying to work on my website and I got some really nice color business cards printed up. I thought it would be more professional and an easy way to share my information. They're a custom design with one on my paintings on the front, along with my website address and a statistic about spinal cord injuries on the reverse side. Luckily, there are a million ways to promote yourself and/or a cause using the internet. I plan to continue working on computer stuff, but I really do need a push to paint!
In efforts of motivating myself, signed up to participate in something.called "the sketchbook project." It's run by a group called the "arthouse co-op, out of The Brooklyn Art Library. I just happened to click on a Facebook ad for it the other night, because it looked interesting. Basically, you sign up, they send you a sketchbook, you fill it & send it back. All of the sketchbooks then go on to exhibitions as part of a cross country tour. Each sketchbook gets abarcode, which can be used to track the book & see if people looked at it. The tour includes exhibits in a bunch of major cities: Brooklyn, NY Austin, TX San Francisco, CA Portland, MEAtlanta, GA &Chicago, IL. Once it's over, people will be able to look at them in the Brooklyn Art Library. I also paid a small extra fee, for the book to be digitized and added to an online library. It sounds like a really cool idea and I'm excited about participating. All I have to do is choose a theme, use the book & not change it's dimensions. I chose the theme "Help!" I thought it was perfect for the purpose of advocacy. I plan on making my sketchbook about paralysis and my hope for a cure. The cool thing is, I can sketch everything on my iPad and then print and transfer them to the book. So staying in bed is no excuse! It'll be interesting to document my progress and follow the book, on its travels. I'll definitely blog about it once I get started.
Speaking of blogs, I had read this article about a paralyzed pro gamer (Randy) & thought it would make for an interesting blog, if I could interview him. I took a chance & contacted him through his youtube site. He agreed & most likely I'll be talking to him soon, through Skype.It'll be cool to compare notes with Randy & hopefully make an interesting blog. I'm sure there are people out there that think they can't play video games, because of physical disabilities. I'm hoping by sharing mine and Randy's techniques and stories we can inspire some new gamers. I've always been into gaming, but it's been especially helpful in coping with my situation. Gaming provides a much needed escape and source of enjoyment.
Wednesday, May 12, 2010
A Matter of Pride??
Living with paralysis is not easy. The smallest tasks that most people take for granted, require help. It'll be five years since my accident, this coming June and there are still aspects of my life that are as hard to cope with as they were back in 2005. My physical wounds only took a few months to heal (what little damage that could), but my mental and emotional wounds still feel fresh sometimes.
I know every situation is unique and the life people have before their spinal cord injury plays a big role in how they cope to the drastic changes of being paralyzed. I've come across quite a few people that had no real direction, or motivation at the time of their injury, had a weak support system of friends/family and few, too little skills to fall back on. It is a blessing and a curse that I had already finished college and had begun to establish my career, when I got hurt. I have a lot of skills, real world experience and a strong support system of friends and family. Despite all that, there are many days I find it incredibly hard to find reasons why I should keep trying; why I should move forward. The inner drive that helped me to be successful on me feet, has been my source of strength, while living in a chair. I can only imagine how much harder it would be to go through all this without the support of friends/family. It makes me very sad to think about all of things I have and lost, but recognize the fact that I still have more than some people I know. I do feel blessed to have had the twenty-four "normal," healthy years that I had. Although I've only been injured a fifth of my life, the time I spent on my feet seems like a blink of the eye, in comparison to the last five years. It is the sheer fact that I worked so hard and achieved so much, that makes it hard for me to want to just give up. A part of me feels like I have to fix the mistake and get back everything and anything I can, so that I don't feel like all my efforts were a waste of time and energy.
The few months before my accident I felt as though all the pieces of my life had finally fell into place. I had the brief luck of feeling completely at peace with my life and happy about the prospects of my future. I don't know if it would really matter as to how I cope with my paralysis, if I had never felt accomplished, happy or proud. Maybe if my life before had miserable, I'd have even less reason to keep going. Contrarily, maybe I'd have less reasons to feel so sad, because I wouldn't have lost so much. I'll never know, but I believe that it is definitely a factor in why I'm able to find strength, while others can't. It's bittersweet to having felt so close to realizing my dreams, only to have it all abruptly taken away. I think part of me feels the need to salvage what I can from my old life, because I'm still chasing after those same dreams. In away, it's like how drugs addict, perpetually chase after the sensation of their first high; although no matter what they do, they never find it. I long to feel the peace and happiness that I felt, those few months before my injury.
Reality is, most of what I had is gone and there's no way to get it back. My material possessions, like my apartment, clothes, car, etc., have all been slowly replaced with newer, more accessible versions or given away. My career is gone, but it's not from lack of trying. I was a year away from tenure, so unfortunately I had nothing to use as leverage, in terms of fighting the district's decision. Although it's painful, I can understand the choice, from a business perspective. I now require a double salary (in a sense), because of my need for an instructional aide. Knowing what I know now, I'm not sure that I'd be able to handle a full time job (physically speaking and having to relying on others to get me ready and for transportation). I've found a compromise in painting. It's not as rewarding, but at least I still feel like I'm using my degree to create art and teach a message. The forth major loss (after my functional abilities,possessions &career) I've had to face is that many of my personal relationships have gone or changed. I feel as though I've tried my best to stay connected and I remain hopeful that those relationships might mend some day. My efforts just aren't good enough for everyone and I have to restrain myself, at times, from going back time after time to work things out, only to end up hurt, again. In all, at least half of my lifetime goals are on hold indefinitely and trying to be patient, while remaining hopeful seems impossible sometimes.
Everything now is a compromise. I live in my own apartment, but with roommates (currently family). I own a car, but need someone to drive it. I create art, but I'm not working in the field I love. I crave time alone and privacy, but need help for everything. I have a dog, but can't take care of her. The list goes on an on. No matter how hard my loved ones, nurses or aides try, no one will ever to be able to do things the way I'd have done them myself (and for certain things, I'd much prefer no help at all). Not to mention, each person assisting me has their own style and quirks. My day to day life is packed full of tiny compromises. Being what most people would classify as an "A" type personality, it has been exceptionally difficult having little, to no control. I like things organized and precise. I love my privacy and freedom to travel. I have high standards on how things should be done and often over do things or get things done in advance. I used to be the queen of planning & had my life charted out and color coded. All of these character traits helped me be a successful student and teacher and allowed me to take on a heavy load of responsibilities. Now, those same traits make it difficult to deal with my need to completely rely on others. I've slowly learned to embrace the motto of taking things one day at a time and have learned to be patient. I'm much better at "going with the flow," than before and have since realized that being flexible is my key to keeping my sanity.
So many disabled people I know have the attitude of, "we can do anything able-bodied people can do, only in a different way." I understand the desire to want equality and respect for people with disabilities, but the upbeat "can do" attitude just irks me sometimes. I feel as though projecting that image of "being just like everyone else" glosses over the reality of the situation and belittles the struggles that people with disabilities face every day. I rather educate the public about the challenges I face and the obstacles that are due to my paralysis. I think acceptance comes through understanding. If society is educated about the realities of paralysis, society will A- embrace the urgent need for a cure and B- be informed enough to know what people with disabilities capabilities and necessities are. I agree that people with disabilities should have equal rights in terms of employment and that more consideration should be made to making things accessible. That said, I'm a realist. The "can doers" get on my nerves, because they often only paint half the picture and sugar coat the situation. If we (those of us with paralysis) are "just like everyone else", then why should people care about helping find a cure? It bothers me that an uneducated public might think: "If things are ok, why not focus on other issues? After all, those people living in wheelchairs don't have it so bad, right? So what is people with paralysis have to do things differently? At least they can do everything we do."
The truth of the matter is, I can't do everything most people can do and neither can the millions of other people suffering with paralysis. Yes, if we (those of us with paralysis) have the right services and support, we can still participate in many things and live full lives. If given the opportunity, we can contribute to society and be productive and certainly deserve respect. However, the reality is, that we are helpless without other people. Our minds might function just fine and we may "call the shots," but in the end, we can not do it alone. At times, I think the "can do" attitude stems from the need to want to feel included or not wanting to wound a person's sense of pride. Some times I think, maybe deep down, the "can do" attitude means that person has accepted his/her disability and has given up on a cure. Other times, I think the "can doer" uses that mind set to help himself/herself cope with all the loss, while trying not to put emphasis on all the realities of life that come along with being paralyzed. However, society needs to see the whole picture. Many people are completely clueless of what a day in the life of someone with paralysis is like. The things that often go overlooked or seem insignificant to an able-bodied person are often big ordeals and stressful for people with disabilities. Toileting is a perfect example of something that the average person doesn't think about, because for them it is a private, personal matter and even if they have insecurities, they have the option not to share them. Going to the bathroom is a basic necessity of life, so no matter how unpleasant, or embarrassing it might be, my paralysis forces me to invite other people into my very private space, in order to help me. I have no choice but to cope with the situation. Cope, or go crazy, I suppose. I've had low self esteem my entire life, so I understand the desire to want to mask flaws or perceived abnormalities. Deep down everyone wants to fit in.
The danger of always acting like a "can doer"' is that it ignores the all the reasons why paralysis is so awful and it can back fire in terms of people's quest for equality. The expression "careful what you wish for, because you might just get it," often crosses my mind. For people with disabilities to be truly "equal" to mainstream society, that would imply that we don't need any special allowances or modifications. Naturally, that is absurd. Most people mean "equal opportunity," when they refer to being equal and do not that people with disabilities should be held to the same criteria as everyone else. I see a problem with this mentality. You can't have your cake and eat it too. I agree that people with disabilities should be given equal opportunity and should be provided with what ever adaptations, modifications or assistance they need, in order for them to be able to be included or productive members of society. However, I think it's critical that the average person know why modifications are necessary in the first place. For example, the fact that I rely on someone else to get dressed, eat, get in my chair and to provide me with transportation. It's not always feasible for me to be on time and I often have to cancel plans. However, these are issues outside of my control and should not reflect poorly on me or be counted against me. Trust me, I would love to be able to hop out of bed into the shower and out the door. Reality is, I can't and while I might have been a very punctual person before, it's not always the case now. People need to be educated. The more people know about various disabilities, the easier it is to promote understanding and acceptance. If more people really knew about the nuances of paralysis and how the disability effects the individual and the extended family, there would be a much louder cry for a cure. If more people understood the challenges of living with a disability people would be more aware and sensitive towards the needs of disabled community. Think about how many times you've gone out and thought, "Why isn't the ramp over here?"; "Am I going to be able to fit a wheelchair through there?"; "How am I going to open that door?." Most people don't consider things with disabilities in mind, partly out of ignorance and party because it hasn't impacted their life.
I think it's our job (those of us living with disabilities and those of us that have loved ones with disabilities) to get out there and help people see why we are fighting for a cure. I applaud others for trying to inspire and be role modes for other people with disabilities. I think it's important that we support one another. Don't get me wrong, I'm not totally against the "can do" attitude. I'm also by no means perfect or think I'm always right. I have a ton of insecurities and vanities. Everyone can benefit from a positive message. "Can doers" offer hope and inspiration to everyone, because of what they do, despite their limitations. I suppose there are certain aspects of my life that others might say are motivational or positive. It's certainly not my goal to be a downer or negative. It is my mission to be realistic. As embarrassing as it is at times, I open myself up to the public, in hopes of raising awareness. I'm not comfortable with my current situation. I'm not looking for pity, but it doesn't offend me when people express sympathy for my situation. I don't view that as degrading; I view it as sympathetic. You know what? I'm sorry for my situation too. It is sad to think about everything I lost and it's not easy living with paralysis. Pride is useless to me. I can't think of anything about paralysis that I'm proud of. I feel satisfaction and/or accomplished at times. I don't have to try. I certainly don't have to make myself uncomfortable in hopes of helping find a cure. I do what I do because I feel a need to educate people. In fact, I think those of us with spinal cord injuries have a valuable, unique perspective to share, because we can relate to both able body people as well as disabled body people. Spinal cord injuries can happen to anyone at any time and have the potential to radically change a life in a matter of seconds. People might not seriously consider the risk of disease, especially if they are young and healthy, but no one can ignore the potential of injury. Spinal cord injuries have nothing to do with genetics, diet, race or gender; everyone is susceptible. In a way I think of raising awareness as a moral obligation, in addition to its benefits of fostering understanding and raising support for a cure.
All in all, I just wish people would be honest. Be real. Be open. Let people in and help them understand why we need a cure. The bottom line is that, no matter how happy or how well someone copes with his/her disability, I'm 99% certain that anyone would gladly trade his/her chair in exchange for a cure. No rational human being would choose dependence, sickness and obstacles over health and freedom. Put your pride aside for the greater good (even if it''s just every now and then) and help fight for a cure. The more people you touch (effect, inspire, motivate and/or educate), the more people will care. I work on coping with my situation every day. I try to make the best of my situation, but I refuse to ever accept my paralysis. I know it's my reality, for now and even perhaps until I die, but I will never accept that it's ok. It's not ok. No one should have to live like this. At the very least, everyone deserves to be healthy and I would never wish this life on someone else. That is why I say it's my responsibility to do something, even if it's small.
I know every situation is unique and the life people have before their spinal cord injury plays a big role in how they cope to the drastic changes of being paralyzed. I've come across quite a few people that had no real direction, or motivation at the time of their injury, had a weak support system of friends/family and few, too little skills to fall back on. It is a blessing and a curse that I had already finished college and had begun to establish my career, when I got hurt. I have a lot of skills, real world experience and a strong support system of friends and family. Despite all that, there are many days I find it incredibly hard to find reasons why I should keep trying; why I should move forward. The inner drive that helped me to be successful on me feet, has been my source of strength, while living in a chair. I can only imagine how much harder it would be to go through all this without the support of friends/family. It makes me very sad to think about all of things I have and lost, but recognize the fact that I still have more than some people I know. I do feel blessed to have had the twenty-four "normal," healthy years that I had. Although I've only been injured a fifth of my life, the time I spent on my feet seems like a blink of the eye, in comparison to the last five years. It is the sheer fact that I worked so hard and achieved so much, that makes it hard for me to want to just give up. A part of me feels like I have to fix the mistake and get back everything and anything I can, so that I don't feel like all my efforts were a waste of time and energy.
The few months before my accident I felt as though all the pieces of my life had finally fell into place. I had the brief luck of feeling completely at peace with my life and happy about the prospects of my future. I don't know if it would really matter as to how I cope with my paralysis, if I had never felt accomplished, happy or proud. Maybe if my life before had miserable, I'd have even less reason to keep going. Contrarily, maybe I'd have less reasons to feel so sad, because I wouldn't have lost so much. I'll never know, but I believe that it is definitely a factor in why I'm able to find strength, while others can't. It's bittersweet to having felt so close to realizing my dreams, only to have it all abruptly taken away. I think part of me feels the need to salvage what I can from my old life, because I'm still chasing after those same dreams. In away, it's like how drugs addict, perpetually chase after the sensation of their first high; although no matter what they do, they never find it. I long to feel the peace and happiness that I felt, those few months before my injury.
Reality is, most of what I had is gone and there's no way to get it back. My material possessions, like my apartment, clothes, car, etc., have all been slowly replaced with newer, more accessible versions or given away. My career is gone, but it's not from lack of trying. I was a year away from tenure, so unfortunately I had nothing to use as leverage, in terms of fighting the district's decision. Although it's painful, I can understand the choice, from a business perspective. I now require a double salary (in a sense), because of my need for an instructional aide. Knowing what I know now, I'm not sure that I'd be able to handle a full time job (physically speaking and having to relying on others to get me ready and for transportation). I've found a compromise in painting. It's not as rewarding, but at least I still feel like I'm using my degree to create art and teach a message. The forth major loss (after my functional abilities,possessions &career) I've had to face is that many of my personal relationships have gone or changed. I feel as though I've tried my best to stay connected and I remain hopeful that those relationships might mend some day. My efforts just aren't good enough for everyone and I have to restrain myself, at times, from going back time after time to work things out, only to end up hurt, again. In all, at least half of my lifetime goals are on hold indefinitely and trying to be patient, while remaining hopeful seems impossible sometimes.
Everything now is a compromise. I live in my own apartment, but with roommates (currently family). I own a car, but need someone to drive it. I create art, but I'm not working in the field I love. I crave time alone and privacy, but need help for everything. I have a dog, but can't take care of her. The list goes on an on. No matter how hard my loved ones, nurses or aides try, no one will ever to be able to do things the way I'd have done them myself (and for certain things, I'd much prefer no help at all). Not to mention, each person assisting me has their own style and quirks. My day to day life is packed full of tiny compromises. Being what most people would classify as an "A" type personality, it has been exceptionally difficult having little, to no control. I like things organized and precise. I love my privacy and freedom to travel. I have high standards on how things should be done and often over do things or get things done in advance. I used to be the queen of planning & had my life charted out and color coded. All of these character traits helped me be a successful student and teacher and allowed me to take on a heavy load of responsibilities. Now, those same traits make it difficult to deal with my need to completely rely on others. I've slowly learned to embrace the motto of taking things one day at a time and have learned to be patient. I'm much better at "going with the flow," than before and have since realized that being flexible is my key to keeping my sanity.
So many disabled people I know have the attitude of, "we can do anything able-bodied people can do, only in a different way." I understand the desire to want equality and respect for people with disabilities, but the upbeat "can do" attitude just irks me sometimes. I feel as though projecting that image of "being just like everyone else" glosses over the reality of the situation and belittles the struggles that people with disabilities face every day. I rather educate the public about the challenges I face and the obstacles that are due to my paralysis. I think acceptance comes through understanding. If society is educated about the realities of paralysis, society will A- embrace the urgent need for a cure and B- be informed enough to know what people with disabilities capabilities and necessities are. I agree that people with disabilities should have equal rights in terms of employment and that more consideration should be made to making things accessible. That said, I'm a realist. The "can doers" get on my nerves, because they often only paint half the picture and sugar coat the situation. If we (those of us with paralysis) are "just like everyone else", then why should people care about helping find a cure? It bothers me that an uneducated public might think: "If things are ok, why not focus on other issues? After all, those people living in wheelchairs don't have it so bad, right? So what is people with paralysis have to do things differently? At least they can do everything we do."
The truth of the matter is, I can't do everything most people can do and neither can the millions of other people suffering with paralysis. Yes, if we (those of us with paralysis) have the right services and support, we can still participate in many things and live full lives. If given the opportunity, we can contribute to society and be productive and certainly deserve respect. However, the reality is, that we are helpless without other people. Our minds might function just fine and we may "call the shots," but in the end, we can not do it alone. At times, I think the "can do" attitude stems from the need to want to feel included or not wanting to wound a person's sense of pride. Some times I think, maybe deep down, the "can do" attitude means that person has accepted his/her disability and has given up on a cure. Other times, I think the "can doer" uses that mind set to help himself/herself cope with all the loss, while trying not to put emphasis on all the realities of life that come along with being paralyzed. However, society needs to see the whole picture. Many people are completely clueless of what a day in the life of someone with paralysis is like. The things that often go overlooked or seem insignificant to an able-bodied person are often big ordeals and stressful for people with disabilities. Toileting is a perfect example of something that the average person doesn't think about, because for them it is a private, personal matter and even if they have insecurities, they have the option not to share them. Going to the bathroom is a basic necessity of life, so no matter how unpleasant, or embarrassing it might be, my paralysis forces me to invite other people into my very private space, in order to help me. I have no choice but to cope with the situation. Cope, or go crazy, I suppose. I've had low self esteem my entire life, so I understand the desire to want to mask flaws or perceived abnormalities. Deep down everyone wants to fit in.
The danger of always acting like a "can doer"' is that it ignores the all the reasons why paralysis is so awful and it can back fire in terms of people's quest for equality. The expression "careful what you wish for, because you might just get it," often crosses my mind. For people with disabilities to be truly "equal" to mainstream society, that would imply that we don't need any special allowances or modifications. Naturally, that is absurd. Most people mean "equal opportunity," when they refer to being equal and do not that people with disabilities should be held to the same criteria as everyone else. I see a problem with this mentality. You can't have your cake and eat it too. I agree that people with disabilities should be given equal opportunity and should be provided with what ever adaptations, modifications or assistance they need, in order for them to be able to be included or productive members of society. However, I think it's critical that the average person know why modifications are necessary in the first place. For example, the fact that I rely on someone else to get dressed, eat, get in my chair and to provide me with transportation. It's not always feasible for me to be on time and I often have to cancel plans. However, these are issues outside of my control and should not reflect poorly on me or be counted against me. Trust me, I would love to be able to hop out of bed into the shower and out the door. Reality is, I can't and while I might have been a very punctual person before, it's not always the case now. People need to be educated. The more people know about various disabilities, the easier it is to promote understanding and acceptance. If more people really knew about the nuances of paralysis and how the disability effects the individual and the extended family, there would be a much louder cry for a cure. If more people understood the challenges of living with a disability people would be more aware and sensitive towards the needs of disabled community. Think about how many times you've gone out and thought, "Why isn't the ramp over here?"; "Am I going to be able to fit a wheelchair through there?"; "How am I going to open that door?." Most people don't consider things with disabilities in mind, partly out of ignorance and party because it hasn't impacted their life.
I think it's our job (those of us living with disabilities and those of us that have loved ones with disabilities) to get out there and help people see why we are fighting for a cure. I applaud others for trying to inspire and be role modes for other people with disabilities. I think it's important that we support one another. Don't get me wrong, I'm not totally against the "can do" attitude. I'm also by no means perfect or think I'm always right. I have a ton of insecurities and vanities. Everyone can benefit from a positive message. "Can doers" offer hope and inspiration to everyone, because of what they do, despite their limitations. I suppose there are certain aspects of my life that others might say are motivational or positive. It's certainly not my goal to be a downer or negative. It is my mission to be realistic. As embarrassing as it is at times, I open myself up to the public, in hopes of raising awareness. I'm not comfortable with my current situation. I'm not looking for pity, but it doesn't offend me when people express sympathy for my situation. I don't view that as degrading; I view it as sympathetic. You know what? I'm sorry for my situation too. It is sad to think about everything I lost and it's not easy living with paralysis. Pride is useless to me. I can't think of anything about paralysis that I'm proud of. I feel satisfaction and/or accomplished at times. I don't have to try. I certainly don't have to make myself uncomfortable in hopes of helping find a cure. I do what I do because I feel a need to educate people. In fact, I think those of us with spinal cord injuries have a valuable, unique perspective to share, because we can relate to both able body people as well as disabled body people. Spinal cord injuries can happen to anyone at any time and have the potential to radically change a life in a matter of seconds. People might not seriously consider the risk of disease, especially if they are young and healthy, but no one can ignore the potential of injury. Spinal cord injuries have nothing to do with genetics, diet, race or gender; everyone is susceptible. In a way I think of raising awareness as a moral obligation, in addition to its benefits of fostering understanding and raising support for a cure.
All in all, I just wish people would be honest. Be real. Be open. Let people in and help them understand why we need a cure. The bottom line is that, no matter how happy or how well someone copes with his/her disability, I'm 99% certain that anyone would gladly trade his/her chair in exchange for a cure. No rational human being would choose dependence, sickness and obstacles over health and freedom. Put your pride aside for the greater good (even if it''s just every now and then) and help fight for a cure. The more people you touch (effect, inspire, motivate and/or educate), the more people will care. I work on coping with my situation every day. I try to make the best of my situation, but I refuse to ever accept my paralysis. I know it's my reality, for now and even perhaps until I die, but I will never accept that it's ok. It's not ok. No one should have to live like this. At the very least, everyone deserves to be healthy and I would never wish this life on someone else. That is why I say it's my responsibility to do something, even if it's small.
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