EbruTV updated their website with a new look. I really like the new streamlined, modern look they've created for their site! I worked with them in 2009 on a show they produce called "Soul Survivors." I'm updating all of my social networking sites with the new link. Check out the episode & see me talking about my accident, my experiences living with paralysis and my artwork. Please feel free to leave me feedback & share the link with family and friends! Thanks <3
http://www.ebru.tv/en/genres/LifestyleCulture/soul-survivors/episodes/1/110-christina-symanski
Saturday, December 4, 2010
Thursday, December 2, 2010
Far From Awesome
My best friend sent me a link to a story about a bride to be, named Rachelle, who was recently paralyzed in a freak accident. She suffered a C6 spinal cord injury, after her best friend pushed her into a pool, at her own bachelorette party. Rachelle was recently interviewed by Meridith Vieira on the Today show, where she talked about her injury, and recovery. They don't mention in the interview, or accompanying article if Rachelle's injury, is complete or not, but given the level of her injury and the amount of recovery she's gained, I'm guessing it is a complete injury. They show her clearly able to push herself in a manual wheelchair, playing wheelchair rugby, and using a universal handcuff to feed herself, which all indicate at least some function in her biceps, triceps and wrists. She mentions having a supportive family, friends & fiance (whom she still intends to marry) and even discusses the fact that neither she or her family blame her best friend. She even goes so far as to calling her current life "awesome" and cites her positive attitude as they key to her recovery, and rosy outlook on life. I commend her for her positive attitude, and will even go as far as saying, she is certainly an inspiration, to anyone, newly injured with a spinal cord injury. However, after living with paralysis for five years now, I'm forced to wonder how long she'll be able to maintain that same zest for life. Her accident, injury, and point in life, at which she was injured, are all very similar to my own experiences, so I can't help but want to compare our situations, and our very different perspectives.
Whenever I come across stories similar to my own, I filled with mixed emotions. On one hand, it's comforting to know that I'm not unique; that there are other people out there, that might truly understand what I'm going through. It's also comforting in the sense that it dulls the overwhelming sense of guilt, regret and astonishment over my own poor judgment. I'm constantly beating myself up over the stupidity of my accident, and forever searching for a motive, or reason behind why I did what I did, and why I'm having to pay such a high price, for one, foolish split section decision. It does help, in a weird way, knowing that I'm not an anomoly, and other people have made the same mistake. On the other hand, it saddens me and disturbs me, to know that there are people out there living with a similar situation, because I know how horrible it can be. There are few people I'd ever wish to be paralyzed, or to live in my shoes, and even then, I'd only ever wish it as a temporary learning experience (politicians and lawmakers come to mind). It breaks my heart, and frustrates me, to know that millions of people have to live with paralysis, because there is no cure. When I think of my own experiences, living with paralysis, my sympathies, outweigh any comfort I gain, from knowing there are people out there just like me.
It's shocking to me, and hard to understand, when I come across people (or read, or hear stories about people) that are living with paralysis, like Rachelle, Joni Eareckson Tada, (the late, Christopher Reeve) or Dr. Dan Gottlieb, that claim to be happy, and living fulfilling lives. Granted, all of the people I listed have mentioned some of the hardships they've faced due to paralysis, but if you read their writing, or articles about them, the majority of what they say is very positive and inspiring. Obviously, I don't know much about Rachelle, except the little I've read online and what she said in her interview. However, I own books written by the other three authors I mentioned, and have followed their stories through videos and writing on the web. Rachelle's case, is especially mind boggling to me, because she is so newly injured. She hasn't even been injured a year, and yet she has seemingly not only has come to grips with an unfathomable amount of change and loss, but appears to be happy and thriving. In comparison, I've been injured for five and half years, and still find day to day obstacles traumatizing. Thinking back to my first year post accident, I can only recall memories of trauma, disappointment, pain, shock and fear. The first year for me, was hell on Earth. Many people that I've read about, or spoken to, admit that it has taken years for them to learn to cope, and/or be able find joy in life with paralysis. I can't even begin to imagine how people like Dr. Gottlieb, or Joni have managed to stay sane, and inspiring, after decades of living with paralysis.
I've come to the conclusion that people like Rachelle, are rare people, who despite insurmountable odds, can somehow find peace, and joy, no matter what life throws at them. I try not to beat myself up for not being able to live up to that standard of inspiration, because I feel it is completely unrealistic, for the average person (myself included). I have to force myself to take a mental step back, and examine the facts. If I were to compare my situation to Rachelle's, for instance, the first major difference I'd have to consider, is the fact that she has functional movement. That is huge! The fact that she has some triceps and wrist control (from what I saw, and her level of injury) means that she can do a lot more for herself. For example, I can't use a manual wheelchair, pick anything up, or really feed myself. Although, those might seem like small victories to the average AB (able bodied) person, each level of function down the spine translates into more freedom and independence, for those of us living with paralysis.
Another huge difference in my situation, versus Rachelle's situation, is the fact that her fiancé is still at her side. The support, or lack there of, of loved ones is critical to anyone's overall mental strength, and stability. The sad truth is, that most relationships don't outlast a devastating, life changing event, like a spinal cord injury (especially, a high level, cervical injury). Most romantic relationships fall apart, friendships fade away, and even family can let you down. There's no telling how people will react to scale of change, and loss that paralysis brings with it, until they are actually faced with it. It takes a massive amount of patience, compromise, and work to live with paralysis. Unfortunately, for those of us who are paralyzed, we have no choice, but to face the situation, for what it is, and try our best to move forward. Family, friends, and significant others, all have the luxury to run away, as heart wrenching as that might be. Many people choose the easy rode, and opt out of the situation, either all together, or at the very least, enough to give themselves a break (a much deserved break- in the case of the people that do choose to continue to be in the person's life, who's suffered the injury). While I have an extraordinary group of friends, and supportive family, my romantic relationship ended up, as most do, and I've had my share of surprising disappointments, with some of the people I least suspected.
I'm not speaking from bitter resentment, or cynicism, I'm just being realistic. I witnessed dozens of people, left behind, during my stay in the nursing home, and rehab, and have read about, or met, countless other people, such as myself, with similar stories. It is the nature of the beast. Paralysis isn't pretty. It is not easy to live with constant compromise. I can't say with certainty, what I'd do if my situation was reversed, but if I had an escape, right now, I'd surely be running. So I don't lay blame, or judge anyone, in my personal circle of loved ones. I do know for certainly, that having that support, especially that of a spouse, or significant other, does make a world of difference. It is a very hard rode to travel, at all, and almost impossible to do it alone. Rachelle should consider herself very lucky. However, the realist in me (or cynic, as some would say) can't help but point out that time will be the true test, especially since it hasn't even been a year since her injury. I only hope her fiancé will prove the statistics wrong.
I often ask myself, if I'm at fault, for not letting myself be happy; if I'm too negative, or too stubborn. I don't think it's wrong, to want more, or to be dissatisfied with my life. Should I just give in, and accept the fact that it should be ok that I have to endure, the things I have to endure on a daily basis? To what end should I compromise, give up, and let go? I don't think it's right that anyone should have to go through the things I do. It's very easy, for those looking in, to suggest being satisfied with having to do everything I ever knew differently, to find enjoyment in the remnants of what's left of the things I used to love to do and to find the strength to cope with the constant invasion to my personal space, and privacy. It's not so easy to do all of those things; at least for me it isn't. I have a feeling, that most of the people that dish out advice, would have difficulty following the things they expect me to do, if they were forced to have to experience my life firsthand. Does that make me a negative person? Is it really negative to see things at face value and call them out, as they are? I don't think so.
There have been many times in my life, since my accident, that people (strangers and friends alike) have called me an inspiration, for moving forward, for painting, and for my writing. I've never tried to be inspiring. Reality is, I have a very limited amount of choices in front of me, and I pick what I can handle, from day to day. One, I can give up all together, which is often very tempting, trust me. Two, I could ignore my past completely, give up on all my dreams (I'm not talking about compromises) and embrace my new life; don't hold your breath. Three, I could put on a show, hide my true feelings and endure in silence, or indulge in sugar coating. Four, I can try my best to compromise and share my experiences, pain and all. Most days I choose number four, because number one would hurt my loved ones, and because I want people to know why a cure should be found.
Whenever I come across stories similar to my own, I filled with mixed emotions. On one hand, it's comforting to know that I'm not unique; that there are other people out there, that might truly understand what I'm going through. It's also comforting in the sense that it dulls the overwhelming sense of guilt, regret and astonishment over my own poor judgment. I'm constantly beating myself up over the stupidity of my accident, and forever searching for a motive, or reason behind why I did what I did, and why I'm having to pay such a high price, for one, foolish split section decision. It does help, in a weird way, knowing that I'm not an anomoly, and other people have made the same mistake. On the other hand, it saddens me and disturbs me, to know that there are people out there living with a similar situation, because I know how horrible it can be. There are few people I'd ever wish to be paralyzed, or to live in my shoes, and even then, I'd only ever wish it as a temporary learning experience (politicians and lawmakers come to mind). It breaks my heart, and frustrates me, to know that millions of people have to live with paralysis, because there is no cure. When I think of my own experiences, living with paralysis, my sympathies, outweigh any comfort I gain, from knowing there are people out there just like me.
It's shocking to me, and hard to understand, when I come across people (or read, or hear stories about people) that are living with paralysis, like Rachelle, Joni Eareckson Tada, (the late, Christopher Reeve) or Dr. Dan Gottlieb, that claim to be happy, and living fulfilling lives. Granted, all of the people I listed have mentioned some of the hardships they've faced due to paralysis, but if you read their writing, or articles about them, the majority of what they say is very positive and inspiring. Obviously, I don't know much about Rachelle, except the little I've read online and what she said in her interview. However, I own books written by the other three authors I mentioned, and have followed their stories through videos and writing on the web. Rachelle's case, is especially mind boggling to me, because she is so newly injured. She hasn't even been injured a year, and yet she has seemingly not only has come to grips with an unfathomable amount of change and loss, but appears to be happy and thriving. In comparison, I've been injured for five and half years, and still find day to day obstacles traumatizing. Thinking back to my first year post accident, I can only recall memories of trauma, disappointment, pain, shock and fear. The first year for me, was hell on Earth. Many people that I've read about, or spoken to, admit that it has taken years for them to learn to cope, and/or be able find joy in life with paralysis. I can't even begin to imagine how people like Dr. Gottlieb, or Joni have managed to stay sane, and inspiring, after decades of living with paralysis.
I've come to the conclusion that people like Rachelle, are rare people, who despite insurmountable odds, can somehow find peace, and joy, no matter what life throws at them. I try not to beat myself up for not being able to live up to that standard of inspiration, because I feel it is completely unrealistic, for the average person (myself included). I have to force myself to take a mental step back, and examine the facts. If I were to compare my situation to Rachelle's, for instance, the first major difference I'd have to consider, is the fact that she has functional movement. That is huge! The fact that she has some triceps and wrist control (from what I saw, and her level of injury) means that she can do a lot more for herself. For example, I can't use a manual wheelchair, pick anything up, or really feed myself. Although, those might seem like small victories to the average AB (able bodied) person, each level of function down the spine translates into more freedom and independence, for those of us living with paralysis.
Another huge difference in my situation, versus Rachelle's situation, is the fact that her fiancé is still at her side. The support, or lack there of, of loved ones is critical to anyone's overall mental strength, and stability. The sad truth is, that most relationships don't outlast a devastating, life changing event, like a spinal cord injury (especially, a high level, cervical injury). Most romantic relationships fall apart, friendships fade away, and even family can let you down. There's no telling how people will react to scale of change, and loss that paralysis brings with it, until they are actually faced with it. It takes a massive amount of patience, compromise, and work to live with paralysis. Unfortunately, for those of us who are paralyzed, we have no choice, but to face the situation, for what it is, and try our best to move forward. Family, friends, and significant others, all have the luxury to run away, as heart wrenching as that might be. Many people choose the easy rode, and opt out of the situation, either all together, or at the very least, enough to give themselves a break (a much deserved break- in the case of the people that do choose to continue to be in the person's life, who's suffered the injury). While I have an extraordinary group of friends, and supportive family, my romantic relationship ended up, as most do, and I've had my share of surprising disappointments, with some of the people I least suspected.
I'm not speaking from bitter resentment, or cynicism, I'm just being realistic. I witnessed dozens of people, left behind, during my stay in the nursing home, and rehab, and have read about, or met, countless other people, such as myself, with similar stories. It is the nature of the beast. Paralysis isn't pretty. It is not easy to live with constant compromise. I can't say with certainty, what I'd do if my situation was reversed, but if I had an escape, right now, I'd surely be running. So I don't lay blame, or judge anyone, in my personal circle of loved ones. I do know for certainly, that having that support, especially that of a spouse, or significant other, does make a world of difference. It is a very hard rode to travel, at all, and almost impossible to do it alone. Rachelle should consider herself very lucky. However, the realist in me (or cynic, as some would say) can't help but point out that time will be the true test, especially since it hasn't even been a year since her injury. I only hope her fiancé will prove the statistics wrong.
I often ask myself, if I'm at fault, for not letting myself be happy; if I'm too negative, or too stubborn. I don't think it's wrong, to want more, or to be dissatisfied with my life. Should I just give in, and accept the fact that it should be ok that I have to endure, the things I have to endure on a daily basis? To what end should I compromise, give up, and let go? I don't think it's right that anyone should have to go through the things I do. It's very easy, for those looking in, to suggest being satisfied with having to do everything I ever knew differently, to find enjoyment in the remnants of what's left of the things I used to love to do and to find the strength to cope with the constant invasion to my personal space, and privacy. It's not so easy to do all of those things; at least for me it isn't. I have a feeling, that most of the people that dish out advice, would have difficulty following the things they expect me to do, if they were forced to have to experience my life firsthand. Does that make me a negative person? Is it really negative to see things at face value and call them out, as they are? I don't think so.
There have been many times in my life, since my accident, that people (strangers and friends alike) have called me an inspiration, for moving forward, for painting, and for my writing. I've never tried to be inspiring. Reality is, I have a very limited amount of choices in front of me, and I pick what I can handle, from day to day. One, I can give up all together, which is often very tempting, trust me. Two, I could ignore my past completely, give up on all my dreams (I'm not talking about compromises) and embrace my new life; don't hold your breath. Three, I could put on a show, hide my true feelings and endure in silence, or indulge in sugar coating. Four, I can try my best to compromise and share my experiences, pain and all. Most days I choose number four, because number one would hurt my loved ones, and because I want people to know why a cure should be found.
I can't envision myself ever being able to compromise on certain aspects of my life, or be able to accept with the compromises that are forced onto me (like having a catheter, bowel regime, or lack of physical intimacy). I want people to know my pain, and see the whole picture of paralysis. I want people, that can otherwise run away, understand the truths that I'm stuck with. I believe it's the painful, ugly, embarrassing aspects of paralysis that impact people, in a deeper way. I mean, if my life were awesome, why would I need help? If paralysis isn't so bad, why bother to cure it? I don't say that, to diminish, or belittle the positive, inspiring people, like Christopher Reeve, or Rachelle. I commend them for their efforts, and am envious of their ability to deal with their lives. I just feel it's important to have balance, and necessary, to educate the public, about all aspects of paralysis, because in the end, no matter how well someone copes, I'm one hundred percent sure, we all would rather be cured.
Related links:
1. Rachelle's story- http://today.msnbc.msn.com/id/40312492/ns/today-today_people/
2. Joni Eareckson Tada- http://www.joniandfriends.org/
3. Dr. Dan Gottlieb- http://www.drdangottlieb.com/
4. Disability & Divorce- http://www.sexualhealth.com/question/read/283/
5. Spinal Cord Injury Levels-http://www.livinghealthcare.net.au/site/DefaultSite/filesystem/images/spinal-nerve-function.jpg
Related links:
1. Rachelle's story- http://today.msnbc.msn.com/id/40312492/ns/today-today_people/
2. Joni Eareckson Tada- http://www.joniandfriends.org/
3. Dr. Dan Gottlieb- http://www.drdangottlieb.com/
4. Disability & Divorce- http://www.sexualhealth.com/question/read/283/
5. Spinal Cord Injury Levels-http://www.livinghealthcare.net.au/site/DefaultSite/filesystem/images/spinal-nerve-function.jpg
Monday, October 11, 2010
Gadgets, Gizmos & Technology
I recently read (and posted) an article about Berkley Bionics new "eLEGS" exoskeleton, for paraplegics. I'd heard of, and seen similar prototypes on television shows ( mostly on the Science channel), discussing futuristic military equipment and upcoming medical technology, in addition to this particular article. Being an avid anime fan and science fiction geek, means I'm no stranger to the concept of bio-tech gadgets, likemecha suits, holobands, exoskeletons, android, robotic and avatar like devices. Science fiction is becoming fact, for many of these types of devices. We've begun mixing man with machine, in order to enhance our abilities, entertain and excite our senses, as well as return function, to those who have lost abilities, due to injury, or disease. While I view these technologies as helpful, and interesting, I tend to get frustrated and resentful at the thought of having to rely on machinery, instead of my own physiology. It's one thing to use gadgets for enhancement, or excitement, like video games, simulators, sensory stimulation (like HD tv, surround sound & 3D movies), or even rides. It's entirely different to be dependent on machinery, to move, feel, or function. While I'll admit, it's a first step (no pun intended) towards regaining function, I see gadgets as temporary compromises, and have a limited amount of enthusiasm towards them. Machines are just one more compromise, in a life already saturated with compromises, modifications, adjustments and having to settle, with what I have.
If you're not into gadgets, and technology, you'd probably be amazed to know some of the current technologies that we already process, and/or that are being developed in the here and now. I've seen pacemaker like devices, to assist in breathing (Christopher Reeve used this technology). There are devices that allow people to remotely control their limbs, bowel, bladder, and sexual function. I've also seen devices that actually "plug-in" to a persons brain, to allow them to operate a computer. There are devices that use eye movements to control computers, or machines. There's also a company out there that has developed a gaming system that is controlled by headgear, which recognizes various electrical impulses sent out from the brain. I even saw a prototype for a body suit that can receive sensory stimulation, meant to be worn and connected to the computer, which partners could use to send sensory signals to one another (essentially taking virtual intimacy to whole new level). I find technology, machines and computers fascinating, and enjoy reading and watching about them. However, for as much as I'm intrigued by mechanical engineering and technology, I'm equally frustrated by it. I feel as though machines both liberate and limit us, and get frustrated by the amount of time, energy, money, and brain power that our society invests in them. In the end, what good are machines, if there is no one is able to use them. Why focus on machinery, instead of our own bodies? Shouldn't we discover how we work first? Shouldn't we unravel all the mysteries of ourselves first? I think more emphasis needs to be put on humanity and health. Let's understand how to work with the biology we were born with, and how to fix it, instead of settling for compromises, or worrying about enhancements.
It boggles my mind how much money and time is spent on trying to find answers to questions of curiosity or weapons of destruction. Most space exploration is a huge waste of resources, in terms of practical, tangible knowledge, yet we spend BILLIONS each year on it. Although it's tantalizing to think of discovering other Earth like planets (none of which we have -even remotely close- the technology to actual reach in a single lifetime), or microorganisms deep inside the water, that may, or may not be beneath Jupiter's moon's surface, none of it is practical information. What benefits can humanity hope to gain through this type of research? How can we apply the information we learn from the billions being spent on projects like exploring Europa (Jupiter's moon)? The answer is, we can't. The type of life we hope to find in space is either too far away to reach, or so insignificantly small, that it has nothing to offer us, other than quenching our thirst for knowledge. Sure, there's a ton of interesting mysteries in our universe that are worth answering, but to what extent? Doesn't it seem logical to prioritize our time and energy, and first unravel the mysteries of our own bodies, ourselves? Why is it acceptable that we can't fix the spinal cord, but we can justify diverting resources to building weapons, exploring deep space, or building better gadgets? Shouldn't we ask ourselves how the things we do impact life; how they can improve the quality of life? I don't think it's just, that in the year 2010 people are still suffering with ailments like paralysis and cancer, which have plagued humanity for centuries (probably forever, but we didn't have the technology to detect or manage them). It's alarming to me, that geniuses, like Steven Hawking (especially ironic, in his case, in particular) prefer to use their incredible minds to answer fascinating, yet often low priority riddles, in terms of the concrete impact the information they gather has on everyday life. Don't get me wrong, I know quantum physics and associations like CERN, and NASA do offer us with some practical applications, like satellites, GPS, nuclear fusion, etc.. Unfortunately, a large bulk of effort is spent on impractical priorities, like searching for extraterrestrial life, "God particles," and explanations on dark matter. That's all well and good, but can't we worry about that stuff AFTER we figure out ourselves?
Another reason why I'm not personally jumping for joy (figuratively, of course) about this new technology, is that the Berkley Bionics exoskeleton is designed for paraplegics. You need to have a functioning upper body in order to operate it, which I don't. It's touted as being relatively lightweight in design (compared to similar prototypes), although it includes a leg/foot cast apparatus, two arms poles and a backpack (which I'm assuming is the battery). It looks bulky and cumbersome to me, however let's face it, a wheelchair is no better. The device requires the user to be able to transfer his/her lower extremities into the device, fasten all the straps, put on the backpack, and grab onto the arm poles, all before even being able to stand up. Even so, if I had a functioning upper body, I'd gladly trade in my set of wheels for a suit, regardless. The health benefits of wearing the exoskeleton far outweigh any hassles, that will surely come along with using it. Being able to bear weight on your bones is crucial. After five years of sitting, I'm sure my bones are equivalent to those of a ninety year old woman. Being able to walk , upright also has countless other medical benefits for circulation, and digestion. Despite the bulkiness and awkwardness of having to strap on so much paraphernalia, I'm sure users will have more confidence and self worth, as compared to rolling around it a chair. The one woman quoted in the article, mentions that fact. I own a tilt table, which allows me to bear weight on my bones, but it's no where near as helpful as actual locomotion. Not to mention, in a tilt table, or standing frame, you're strapped in and stationary, so you can't really interact with the environment in any productive sense. Since I have no functional upper body control, my trunk is to weak to remain upright, so it must be strapped down, to avoid me from falling forward. Plus, I have no functional arm/hand control, which makes interacting with my environment a mute point. For paraplegics however, this type of technology is very exciting. It would give people with lower extremity paralysis back much more independence, and dignity. If you watch the video demonstrations of her using the exoskeleton, you see her being able to stand eye level with her best friend, and be able to embrace her, standing up. The medical and therapeutic possibilities are amazing, but things like being able to stand next to a loved one, and hug them are priceless.
Like I said earlier, it's a stepping stone, to giving people back their independence and self confidence.Gadgets are ok, but they'll never be as good as the body I was born with. All the machines in the world can not replace all that paralysis takes away. Having to rely on a machine, is not that much better than having to rely on another person. Dependence, is dependence, no matter how you slice it. Reliance on machinery is a step up from relying on people, because it gives us the illusion of more control, and gives us a boost of confidence, in having the dignity of privacy to handle matters ourselves. However, machines have their own limitations and obstacles. The fact that the exoskeleton will rely on electricity is a key example of limitations. Yes, the user will have more control over assuring that they charge the battery, or have backups. You can control maintenance on a machine, and have reliable back up plans, more so than the unpredictability or control over a human aide. However, machines will only ever be a compromised version of our "God given" abilities. Another example of this is the fact that users of the exoskeletons will be able to walk, but will not be able to feel. The exoskeleton will give paraplegics back locomotion, but not sensation. The exoskeleton will not solve the second biggest (or first most, depending on your point of view) problem of paralysis, which is the lack of feeling. Users will be able to take a step, but unable to feel their feet touching the ground. The exoskeleton solves the problem of getting around, but doesn't even begin to address other aspects of paralysis: incontinence, sexual function, pain and/or numbness. The exoskeleton has a much greater potential to help newly injured people, retain abilities, while the body still possess muscle memory, but will not be able to address those concerns, in people that have been paralyzed for years. That is why, the best "cure" or solution, is always going to be, first and foremost, the reparation of the spinal cord itself. There is just no equal substitute to the biological wiring within our own bodies. That is where the great majority of the research, time and energy needs to be. It'll be nice for some people to get around, in the interim, but please, just give me back my body. I'm happy for those people that will benefit from this technology, and agree that every little bit helps. I'll use whatever I can, to improve my independence, but all I want is my own body. It's not enough to just go through the motions. I don't just want to move; I want to FEEL. I want to be able to truly experience every aspect of walking again. That's part of what's so hard about a spinal cord injury; it's that I KNOW what it's like to run, dance, walk, swim, and ride a bike. I remember what I'm missing, and I want it ALL back. I want to be truly independent, and not have to worry about having to buy replacement parts, rely of batteries, on mechanics to live my life. I want people to see the whole picture, and think about what counts most. Let's focus on the core problem and refocus priorities to the most basic of human necessities, health and independence. Granted, figuring out how to control and repair the central nervous system is highly more complex, than building machines, I get that. However, shouldn't that be all the more reason, for pushing for MORE support, and extra emphasis, on solving the REAL problem?
Related links:
1. Exoskeleton- http://www.wired.com/gadgetlab/2010/10/berkeley-bionics-elegs/
2. Exoskeleton- http://www.disabledandproductive.com/blog-posts/rewalk-system-helps-paraplegics-walk-again/
3. Brain Connection- http://www.sciencecodex.com/the_brain_speaks
4.Incontinence- http://www.gizmag.com/go/7276/
5.Breathing Pacemaker- http://www.averylabs.com/breathing-pacemakers/introduction.html
6. Mind Control- http://www.wired.com/wired/archive/13.03/brain.html
7. Cyber Sex- http://www.pcmag.com/article2/0,2817,36076,00.asp
8. Futuristic Gaming- http://news.bbc.co.uk/2/hi/technology/7254078.stm
If you're not into gadgets, and technology, you'd probably be amazed to know some of the current technologies that we already process, and/or that are being developed in the here and now. I've seen pacemaker like devices, to assist in breathing (Christopher Reeve used this technology). There are devices that allow people to remotely control their limbs, bowel, bladder, and sexual function. I've also seen devices that actually "plug-in" to a persons brain, to allow them to operate a computer. There are devices that use eye movements to control computers, or machines. There's also a company out there that has developed a gaming system that is controlled by headgear, which recognizes various electrical impulses sent out from the brain. I even saw a prototype for a body suit that can receive sensory stimulation, meant to be worn and connected to the computer, which partners could use to send sensory signals to one another (essentially taking virtual intimacy to whole new level). I find technology, machines and computers fascinating, and enjoy reading and watching about them. However, for as much as I'm intrigued by mechanical engineering and technology, I'm equally frustrated by it. I feel as though machines both liberate and limit us, and get frustrated by the amount of time, energy, money, and brain power that our society invests in them. In the end, what good are machines, if there is no one is able to use them. Why focus on machinery, instead of our own bodies? Shouldn't we discover how we work first? Shouldn't we unravel all the mysteries of ourselves first? I think more emphasis needs to be put on humanity and health. Let's understand how to work with the biology we were born with, and how to fix it, instead of settling for compromises, or worrying about enhancements.
It boggles my mind how much money and time is spent on trying to find answers to questions of curiosity or weapons of destruction. Most space exploration is a huge waste of resources, in terms of practical, tangible knowledge, yet we spend BILLIONS each year on it. Although it's tantalizing to think of discovering other Earth like planets (none of which we have -even remotely close- the technology to actual reach in a single lifetime), or microorganisms deep inside the water, that may, or may not be beneath Jupiter's moon's surface, none of it is practical information. What benefits can humanity hope to gain through this type of research? How can we apply the information we learn from the billions being spent on projects like exploring Europa (Jupiter's moon)? The answer is, we can't. The type of life we hope to find in space is either too far away to reach, or so insignificantly small, that it has nothing to offer us, other than quenching our thirst for knowledge. Sure, there's a ton of interesting mysteries in our universe that are worth answering, but to what extent? Doesn't it seem logical to prioritize our time and energy, and first unravel the mysteries of our own bodies, ourselves? Why is it acceptable that we can't fix the spinal cord, but we can justify diverting resources to building weapons, exploring deep space, or building better gadgets? Shouldn't we ask ourselves how the things we do impact life; how they can improve the quality of life? I don't think it's just, that in the year 2010 people are still suffering with ailments like paralysis and cancer, which have plagued humanity for centuries (probably forever, but we didn't have the technology to detect or manage them). It's alarming to me, that geniuses, like Steven Hawking (especially ironic, in his case, in particular) prefer to use their incredible minds to answer fascinating, yet often low priority riddles, in terms of the concrete impact the information they gather has on everyday life. Don't get me wrong, I know quantum physics and associations like CERN, and NASA do offer us with some practical applications, like satellites, GPS, nuclear fusion, etc.. Unfortunately, a large bulk of effort is spent on impractical priorities, like searching for extraterrestrial life, "God particles," and explanations on dark matter. That's all well and good, but can't we worry about that stuff AFTER we figure out ourselves?
Another reason why I'm not personally jumping for joy (figuratively, of course) about this new technology, is that the Berkley Bionics exoskeleton is designed for paraplegics. You need to have a functioning upper body in order to operate it, which I don't. It's touted as being relatively lightweight in design (compared to similar prototypes), although it includes a leg/foot cast apparatus, two arms poles and a backpack (which I'm assuming is the battery). It looks bulky and cumbersome to me, however let's face it, a wheelchair is no better. The device requires the user to be able to transfer his/her lower extremities into the device, fasten all the straps, put on the backpack, and grab onto the arm poles, all before even being able to stand up. Even so, if I had a functioning upper body, I'd gladly trade in my set of wheels for a suit, regardless. The health benefits of wearing the exoskeleton far outweigh any hassles, that will surely come along with using it. Being able to bear weight on your bones is crucial. After five years of sitting, I'm sure my bones are equivalent to those of a ninety year old woman. Being able to walk , upright also has countless other medical benefits for circulation, and digestion. Despite the bulkiness and awkwardness of having to strap on so much paraphernalia, I'm sure users will have more confidence and self worth, as compared to rolling around it a chair. The one woman quoted in the article, mentions that fact. I own a tilt table, which allows me to bear weight on my bones, but it's no where near as helpful as actual locomotion. Not to mention, in a tilt table, or standing frame, you're strapped in and stationary, so you can't really interact with the environment in any productive sense. Since I have no functional upper body control, my trunk is to weak to remain upright, so it must be strapped down, to avoid me from falling forward. Plus, I have no functional arm/hand control, which makes interacting with my environment a mute point. For paraplegics however, this type of technology is very exciting. It would give people with lower extremity paralysis back much more independence, and dignity. If you watch the video demonstrations of her using the exoskeleton, you see her being able to stand eye level with her best friend, and be able to embrace her, standing up. The medical and therapeutic possibilities are amazing, but things like being able to stand next to a loved one, and hug them are priceless.
Like I said earlier, it's a stepping stone, to giving people back their independence and self confidence.Gadgets are ok, but they'll never be as good as the body I was born with. All the machines in the world can not replace all that paralysis takes away. Having to rely on a machine, is not that much better than having to rely on another person. Dependence, is dependence, no matter how you slice it. Reliance on machinery is a step up from relying on people, because it gives us the illusion of more control, and gives us a boost of confidence, in having the dignity of privacy to handle matters ourselves. However, machines have their own limitations and obstacles. The fact that the exoskeleton will rely on electricity is a key example of limitations. Yes, the user will have more control over assuring that they charge the battery, or have backups. You can control maintenance on a machine, and have reliable back up plans, more so than the unpredictability or control over a human aide. However, machines will only ever be a compromised version of our "God given" abilities. Another example of this is the fact that users of the exoskeletons will be able to walk, but will not be able to feel. The exoskeleton will give paraplegics back locomotion, but not sensation. The exoskeleton will not solve the second biggest (or first most, depending on your point of view) problem of paralysis, which is the lack of feeling. Users will be able to take a step, but unable to feel their feet touching the ground. The exoskeleton solves the problem of getting around, but doesn't even begin to address other aspects of paralysis: incontinence, sexual function, pain and/or numbness. The exoskeleton has a much greater potential to help newly injured people, retain abilities, while the body still possess muscle memory, but will not be able to address those concerns, in people that have been paralyzed for years. That is why, the best "cure" or solution, is always going to be, first and foremost, the reparation of the spinal cord itself. There is just no equal substitute to the biological wiring within our own bodies. That is where the great majority of the research, time and energy needs to be. It'll be nice for some people to get around, in the interim, but please, just give me back my body. I'm happy for those people that will benefit from this technology, and agree that every little bit helps. I'll use whatever I can, to improve my independence, but all I want is my own body. It's not enough to just go through the motions. I don't just want to move; I want to FEEL. I want to be able to truly experience every aspect of walking again. That's part of what's so hard about a spinal cord injury; it's that I KNOW what it's like to run, dance, walk, swim, and ride a bike. I remember what I'm missing, and I want it ALL back. I want to be truly independent, and not have to worry about having to buy replacement parts, rely of batteries, on mechanics to live my life. I want people to see the whole picture, and think about what counts most. Let's focus on the core problem and refocus priorities to the most basic of human necessities, health and independence. Granted, figuring out how to control and repair the central nervous system is highly more complex, than building machines, I get that. However, shouldn't that be all the more reason, for pushing for MORE support, and extra emphasis, on solving the REAL problem?
Related links:
1. Exoskeleton- http://www.wired.com/gadgetlab/2010/10/berkeley-bionics-elegs/
2. Exoskeleton- http://www.disabledandproductive.com/blog-posts/rewalk-system-helps-paraplegics-walk-again/
3. Brain Connection- http://www.sciencecodex.com/the_brain_speaks
4.Incontinence- http://www.gizmag.com/go/7276/
5.Breathing Pacemaker- http://www.averylabs.com/breathing-pacemakers/introduction.html
6. Mind Control- http://www.wired.com/wired/archive/13.03/brain.html
7. Cyber Sex- http://www.pcmag.com/article2/0,2817,36076,00.asp
8. Futuristic Gaming- http://news.bbc.co.uk/2/hi/technology/7254078.stm
Monday, September 27, 2010
Out & About
I started thinking about my previous blog, about 9/11 and how fast life can change, and retelling my memories of that day made me reminisce about all the fun I used to have traveling into NYC, and going out, in general. Prior to my accident (June 2005), I was constantly on the go. I loved to travel, and made regular trips into NYC and PA. Half of my family lived in the Pocono mountains of Penssylvania, and one of my best friends and ex-boyfriend lived in other parts of PA. I'd been making the two hour trip, to and fro the Poconos since my mom moved there, when I was nine. Two hours in a car was no big deal for me, and driving the route to my family's house was second nature. Besides that, I just enjoyed traveling. In college I made annual trips down to Orlando, to Disney World, and a couple of road trips up to Maine. Once I graduated college (and started making real money), I started making trips outside the country. In the years just prior to my accident, I went to Italy, Puerto Rico, and Canada. I've always enjoyed going out. I regularly dined out, went shopping, to the movies, to the beach, to parties, dancing, site seeing, and a variety of other things.
I would love to see more of the world, and go out more, but most times, the cons of paralysis, outweigh the pros. I find myself doing less and less, because the memories are too painful, the compromises are too many, and/or the preparation, planning, and health concerns, make the experience more annoying, than enjoyable. Most people don't realize, or consider the amount of effort that goes into to everything I do. Just getting up, into my wheelchair everyday, requires someone else, bathing me, dressing me, grooming me, feeding me, and physically transferring my body. All of that has to be done, just for me to be able to get into a car, let alone determining if places are accessible, or if I'll need additional accommodations. I, in the meantime, am always concerned with the unpredictability of my body (my tollerance for sitting, blood pressure, pressure sores, skin breakdown and incontinence issues). I have concerns in the back of my mind, that the average thirty year old, just doesn't have. It's not as simple as just rolling out of bed, hoping into the shower and throwing some clothes on. I can't just pick up and go on a whim, because I'm completely reliant on others. On top of the logistics, and physical challenges, I'm constantly weighing the emotional pros and cons of everything I do. Most times, the enjoyment factor doesn't cut it for me, and I rather not go through all of physical trouble, to do something that will ultimately upset me, more than entertain me. Unfortunately, most of the enjoyments of my "old life" are more painful than pleasurable, and therefore I avoid them.
I've flown to FL since my accident (twice).Both trips were to Disney World. The first trip was for my best friends wedding, and was a short stay, mainly comprised of activities within the resorts. The second trip was for eight days and we stayed at a resort and went to the theme parks & Downtown Disney. I used to Disney go every summer (as an adult, on my feet) and am extremely familiar with most of the Disney World attractions. Let me tell you, it's like night & day, traveling paralyzed, versus traveling able bodied. Disney has made a lot of accommodations for handicapped people, and much of the transportation and certain attractions are already setup with accessibility in mind. Even so, navigating large crowds, restaurants and shops, have not been very pleasant experiences for me, in my wheelchair. Not to mention the unique experience of flying paralyzed, which brings with it a ton of unpredictabilities, like lay-overs, and delays, which can be extremely taxing, and dangerous, because of the risk for skin breakdown. Let's not forget, all the preparations that need to be made in advance (renting equipment, hiring or bringing a nurse/aide, medical supplies, accessible transportation, needing transfer assistance, etc.).
You'd think you would stand out, sitting in a wheelchair, and people would be mindful, and move out of your way, or help you, but I've noticed that to be the exact opposite of reality. People are so wrapped up in themselves, that they have literally tripped over me, crashed into me, stand obliviously in my way and create obstacles, more times that not. Stores and restaurants often cram the maximum mount of merchandise and/or furniture into their space, which makes it near impossible to navigate, without bumping into displays, forcing people to move, or having to rearange things, just to get by.
Going into NYC used to be my second most favorite outting, outside of trips to PA. I haven't actually been into the city, since my accident. It's something I miss very much. I've been wanting to go for some time now. I'm just so accustomed to going by train, and subway by foot, that I'm a bit intimidated at the thought of figuring out how to get around in a wheelchair. Driving into the city is a headache and more expensive. I do miss going to the museums, walking around Time Square and hanging out in Chinatown. It's not that it's impossible, it's just a hassle having to come up with all of the routes I'd need to take. Not to mention, I'd be relying on someone else for transportation & assistance.
NYC is not nearly as wheelchair friendly as Disney. It is noisy, messy, crowded and fast paced. Its a city, not a theme park, so here aren't designated people, every ten feet, to help you out. While New Yorkers aren't as obnoxious & rude as tv portrays them, they are busy living their day to day lives, not paid employees, ready & willing to make your trip pleasant. Certain places, like Museums, plays, or Madison Square Garden, would probably be the least hassle, and the most accessible. I've thought of attempting to go into the city so many times, I just haven't followed through with it, yet. Plus, I feel as though there are just certain aspects of the city that I won't be able to enjoy anymore. I can't imagine having fun in my chair in Chinatown. It's challenging enough to keep up with hustle & bustle on your feet. The shops are mostly all tiny, cramped & cluttered. Many shops have steps, or a small step, or curb to tangle with and I'd barely be able see a thing above the crowds. It's always congested, and the sidewalks are full of hazards, like merchandise for sale, and garbage.
I used to LOVE going to mall. If you've ever been to New Jersey, it's evident that we Jerseyans love our malls. You can't drive through our state without seeing a huge mall, about every 15 miles. I don't mean strip malls, or outlet malls either. I'm talking about, multi-level, indoor, several big name department stores, food court, sit down restaurants, map necessary, shopping malls. From the moment I got my drivers license, until the day of my accident (1997-2005), I can honestly say, I went to a mall at least once a week. As a teenager, the mall is a fun place to hang out. In college, my boyfriend spoiled me with shopping. As a teacher, I was earning a real salary, and was single, with money to spend. I'm not rich, nor I have ever been in debt (besides medical bills, post accident), but I've always enjoyed to shop. I enjoy window shopping, buying gifts for other people, and used to adore clothes shopping, for myself. Since my accident however, I tend to avoid the malls and do almost all of my shopping exclusively online.
I was never bothered by crowds, until I was in a wheelchair. I'm partially bothered due to self consciousness (I have have always been that way, in terms of comparing myself to others, but had much more confidence in my physical appearance before my accident. My entire self image has declined drastically, since my accident. So much of my body has changed, and is out of my control to maintain, and/or utilize, that it often feels foreign to me.), but more so by the simple fact that it has become difficult and annoying to get around. As I said earlier, most stores are so crowded with stuff I can barely get around, and it bothers me, not being able to pick things up, get close enough to see things, or be able to try clothes on. It's also especially embarrassing if people need to move, or move displays for me to pass through. I feel as though it draws unwanted attention, and further emphasizes me disability.
Eating out was another favorite past-time, that I rarely do anymore. Just the fact that I can't feed myself, is enough to make the experience less enjoyable. It is embarrassing, to have to be fed, like a baby, in front of countless strangers. Not only do I get annoyed, because I can't eat at my own pace, it's equally annoying for whoever is feeding me. Neither person gets to really enjoy their meal. Someone always ends up eating cold food. Plus, there are many foods that aren't designed for a fork & knife, and become very tricky to eat, when someone else is trying to feed you. Foods like, cheese steaks, subs, spaghetti, ice cream cones, candy apples, french fries, popcorn and burgers, are sloppy, awkward and meant to be held, bit, or tossed into your mouth, by the handful. It's not enjoyable, having to cut certain foods that are meant to be bit, and be able to enjoy the mixture of all the layers of flavor. It's awkward eating foods that are dipped, or have heavy sauces, or dressings. Messy foods just draw more attention, and add embarrassment to the situation. Not being able to wipe my mouth, or clean my own face is bothersome. Most restaurants are too crowded to easily maneuver the wheelchairs, and most tables are impossible to get close too, because of height. Having to always sit at the end of a booth, sideways, or protruding out, from the rest of the group, makes me feel more singled out, and self conscious. Having to always direct what I want next, or when I'm thirsty is tedious. I hate having to always drink from a straw, and ask for a sip. For me, paralysis has drained the enjoyment out of the actual "dining" experience. I still enjoy the food, I just hate the "dining." I much rather order to go, and eat in the lower stress environment of my home, in private.
I challenge all of my able bodied readers to experience going out in a wheelchair first hand. Go to the mall and rent one of the chairs, or scooters for a few hours, and see what I mean. Have your significant other push you around, and see things from my perspective. Try to maneuver inside of a department store, and crowded shops, like Claire's, Spencer's or Brookstone. Go out to eat, and let your friends feed you. Even without a wheelchair, you can experience being fed. I don't mean one, or two romantic looking bites either, I mean, a full meal, with a beverage (one person using hands, and the other not). I guarantee, it'll only take one outing to understand what I mean, and realize why certain things are no longer enjoyable, or worth it, to me. It's not just a matter of wanting to be anti-social, or cooped up in my apartment. It's a matter of what is no longer pleasurable, or fulfilling.
I would love to see more of the world, and go out more, but most times, the cons of paralysis, outweigh the pros. I find myself doing less and less, because the memories are too painful, the compromises are too many, and/or the preparation, planning, and health concerns, make the experience more annoying, than enjoyable. Most people don't realize, or consider the amount of effort that goes into to everything I do. Just getting up, into my wheelchair everyday, requires someone else, bathing me, dressing me, grooming me, feeding me, and physically transferring my body. All of that has to be done, just for me to be able to get into a car, let alone determining if places are accessible, or if I'll need additional accommodations. I, in the meantime, am always concerned with the unpredictability of my body (my tollerance for sitting, blood pressure, pressure sores, skin breakdown and incontinence issues). I have concerns in the back of my mind, that the average thirty year old, just doesn't have. It's not as simple as just rolling out of bed, hoping into the shower and throwing some clothes on. I can't just pick up and go on a whim, because I'm completely reliant on others. On top of the logistics, and physical challenges, I'm constantly weighing the emotional pros and cons of everything I do. Most times, the enjoyment factor doesn't cut it for me, and I rather not go through all of physical trouble, to do something that will ultimately upset me, more than entertain me. Unfortunately, most of the enjoyments of my "old life" are more painful than pleasurable, and therefore I avoid them.
I've flown to FL since my accident (twice).Both trips were to Disney World. The first trip was for my best friends wedding, and was a short stay, mainly comprised of activities within the resorts. The second trip was for eight days and we stayed at a resort and went to the theme parks & Downtown Disney. I used to Disney go every summer (as an adult, on my feet) and am extremely familiar with most of the Disney World attractions. Let me tell you, it's like night & day, traveling paralyzed, versus traveling able bodied. Disney has made a lot of accommodations for handicapped people, and much of the transportation and certain attractions are already setup with accessibility in mind. Even so, navigating large crowds, restaurants and shops, have not been very pleasant experiences for me, in my wheelchair. Not to mention the unique experience of flying paralyzed, which brings with it a ton of unpredictabilities, like lay-overs, and delays, which can be extremely taxing, and dangerous, because of the risk for skin breakdown. Let's not forget, all the preparations that need to be made in advance (renting equipment, hiring or bringing a nurse/aide, medical supplies, accessible transportation, needing transfer assistance, etc.).
You'd think you would stand out, sitting in a wheelchair, and people would be mindful, and move out of your way, or help you, but I've noticed that to be the exact opposite of reality. People are so wrapped up in themselves, that they have literally tripped over me, crashed into me, stand obliviously in my way and create obstacles, more times that not. Stores and restaurants often cram the maximum mount of merchandise and/or furniture into their space, which makes it near impossible to navigate, without bumping into displays, forcing people to move, or having to rearange things, just to get by.
Going into NYC used to be my second most favorite outting, outside of trips to PA. I haven't actually been into the city, since my accident. It's something I miss very much. I've been wanting to go for some time now. I'm just so accustomed to going by train, and subway by foot, that I'm a bit intimidated at the thought of figuring out how to get around in a wheelchair. Driving into the city is a headache and more expensive. I do miss going to the museums, walking around Time Square and hanging out in Chinatown. It's not that it's impossible, it's just a hassle having to come up with all of the routes I'd need to take. Not to mention, I'd be relying on someone else for transportation & assistance.
NYC is not nearly as wheelchair friendly as Disney. It is noisy, messy, crowded and fast paced. Its a city, not a theme park, so here aren't designated people, every ten feet, to help you out. While New Yorkers aren't as obnoxious & rude as tv portrays them, they are busy living their day to day lives, not paid employees, ready & willing to make your trip pleasant. Certain places, like Museums, plays, or Madison Square Garden, would probably be the least hassle, and the most accessible. I've thought of attempting to go into the city so many times, I just haven't followed through with it, yet. Plus, I feel as though there are just certain aspects of the city that I won't be able to enjoy anymore. I can't imagine having fun in my chair in Chinatown. It's challenging enough to keep up with hustle & bustle on your feet. The shops are mostly all tiny, cramped & cluttered. Many shops have steps, or a small step, or curb to tangle with and I'd barely be able see a thing above the crowds. It's always congested, and the sidewalks are full of hazards, like merchandise for sale, and garbage.
I used to LOVE going to mall. If you've ever been to New Jersey, it's evident that we Jerseyans love our malls. You can't drive through our state without seeing a huge mall, about every 15 miles. I don't mean strip malls, or outlet malls either. I'm talking about, multi-level, indoor, several big name department stores, food court, sit down restaurants, map necessary, shopping malls. From the moment I got my drivers license, until the day of my accident (1997-2005), I can honestly say, I went to a mall at least once a week. As a teenager, the mall is a fun place to hang out. In college, my boyfriend spoiled me with shopping. As a teacher, I was earning a real salary, and was single, with money to spend. I'm not rich, nor I have ever been in debt (besides medical bills, post accident), but I've always enjoyed to shop. I enjoy window shopping, buying gifts for other people, and used to adore clothes shopping, for myself. Since my accident however, I tend to avoid the malls and do almost all of my shopping exclusively online.
I was never bothered by crowds, until I was in a wheelchair. I'm partially bothered due to self consciousness (I have have always been that way, in terms of comparing myself to others, but had much more confidence in my physical appearance before my accident. My entire self image has declined drastically, since my accident. So much of my body has changed, and is out of my control to maintain, and/or utilize, that it often feels foreign to me.), but more so by the simple fact that it has become difficult and annoying to get around. As I said earlier, most stores are so crowded with stuff I can barely get around, and it bothers me, not being able to pick things up, get close enough to see things, or be able to try clothes on. It's also especially embarrassing if people need to move, or move displays for me to pass through. I feel as though it draws unwanted attention, and further emphasizes me disability.
Eating out was another favorite past-time, that I rarely do anymore. Just the fact that I can't feed myself, is enough to make the experience less enjoyable. It is embarrassing, to have to be fed, like a baby, in front of countless strangers. Not only do I get annoyed, because I can't eat at my own pace, it's equally annoying for whoever is feeding me. Neither person gets to really enjoy their meal. Someone always ends up eating cold food. Plus, there are many foods that aren't designed for a fork & knife, and become very tricky to eat, when someone else is trying to feed you. Foods like, cheese steaks, subs, spaghetti, ice cream cones, candy apples, french fries, popcorn and burgers, are sloppy, awkward and meant to be held, bit, or tossed into your mouth, by the handful. It's not enjoyable, having to cut certain foods that are meant to be bit, and be able to enjoy the mixture of all the layers of flavor. It's awkward eating foods that are dipped, or have heavy sauces, or dressings. Messy foods just draw more attention, and add embarrassment to the situation. Not being able to wipe my mouth, or clean my own face is bothersome. Most restaurants are too crowded to easily maneuver the wheelchairs, and most tables are impossible to get close too, because of height. Having to always sit at the end of a booth, sideways, or protruding out, from the rest of the group, makes me feel more singled out, and self conscious. Having to always direct what I want next, or when I'm thirsty is tedious. I hate having to always drink from a straw, and ask for a sip. For me, paralysis has drained the enjoyment out of the actual "dining" experience. I still enjoy the food, I just hate the "dining." I much rather order to go, and eat in the lower stress environment of my home, in private.
I challenge all of my able bodied readers to experience going out in a wheelchair first hand. Go to the mall and rent one of the chairs, or scooters for a few hours, and see what I mean. Have your significant other push you around, and see things from my perspective. Try to maneuver inside of a department store, and crowded shops, like Claire's, Spencer's or Brookstone. Go out to eat, and let your friends feed you. Even without a wheelchair, you can experience being fed. I don't mean one, or two romantic looking bites either, I mean, a full meal, with a beverage (one person using hands, and the other not). I guarantee, it'll only take one outing to understand what I mean, and realize why certain things are no longer enjoyable, or worth it, to me. It's not just a matter of wanting to be anti-social, or cooped up in my apartment. It's a matter of what is no longer pleasurable, or fulfilling.
Sunday, September 19, 2010
In The Blink Of An Eye
As many of you know, I've been struggling lately, with my situation, and life in general. Living with paralysis (especially a high level, complete spinal cord injury) is an ongoing struggle. Last weekend marked the ninth anniversary of 9/11, and it got me thinking of how fleeting life really is. So much has changed for me, since that fateful day, it's almost unbelievable. I'm certain, if anyone would have told me then, what I know now, about the world and my personal life, I would've have surely thought they were insane. Both 9/11 and my accident, have been hard realities to cope with. Both situations are life lessons, in how little control we have over our own lives, and how quickly life can change, or even end.
Although I thankfully did not lose a loved one that day, I know of people that have, within my community and even had a student, that had lost her father. I'm sure, for those families that did lose a loved one, the harsh reality of life's transient nature is still a raw, painful reality. While I'm sure nine years seems like a short time, to the victims families, I'm guessing most people have put the events of that day in the back of their minds. Yes, everyone else pays their respects, and honors 9/11 as a memorial, but I doubt most people take the time to reflect on the lessons of that day, or give thanks for the fact that they are still healthy, and alive. For most people, the after effects of 9/11 are a distant memory, as is the thought that each day is a gift. People tend to forget life's lessons, unless they have a constant reminder of its consequences. I mention my accident, as an example, because I live with the after effects of that day, every day. I can't put that day in the back of my mind, just as those people who were directly effected, by the 9/11 attacks, will be reminded of that day, every day.
I'm sure everyone old enough to remember the day of September 11, 2001, will never forget the details of that day. Living on the East Coast, New Jersey specifically, had a huge impact on how I was effected personally, by the terror attacks of that day, and how the attacks still effect me to this day. The Twin Towers, and lower Manhattan, had been a familiar sight my entire life. Growing up in Union County, I could often see the NY skyline, on clear days. My family moved a bit further south, when I entered high school, but about half of my neighbors in Old Bridge were all former New Yorkers, and most of them commute to the city every morning, by bus. My senior year, I dated a boy from Queens and went into New York regularly. He taught me how to navigate the subway system, which I love, and miss riding. As a college student, I took the train into the city at least once a month, my entire four years. I always had assignments to complete, by visiting the museums and galleries, plus I loved spending time downtown in Chinatown and Little Italy. Many times, I'd take the train into Manhattan by myself, and spend all day at the M.E.T. working on term papers, or just for fun. One of my favorite things to do was bring my sketchbook with me and just people watch, and wander the Egyptian and Asian sections of the M.E.T. Chinatown was my spot for my anime fix. Back then (1999-2003), anime (Japanese animation) was nowhere near as popular as it is now, and fans had to wait months, or years for current shows to be imported. I had a favorite shop on Lafayette St., where I'd buy ten to twenty VHS tapes at a clip. I was such a good customer that the shop keepers actually recognized me by face. A perfect day would be spent with my best friends, perusing the Chinatown shops, for anime, posters and memorabilia, then hit Little Italy for some coconut gelato, and take the train home, with my arms full of bags stuffed with all of my finds.
It just so happens, that I was taking a black & white photography course, in the fall of 2001. I had gone to lower Manhattan the Sunday before the attacks, to buy all of my photography supplies. That train ride was the last time I saw the towers standing, in person. Looking back, I'd like to kick myself for not photographing them, but who could've imagined they wouldn't always be there? The following day, my brother and ex-boyfriend flew into Newark airport, on a return trip, from FL and I remember my mom (step-mom) mentioning something about a small fire at the airport, which also felt eerie the following day, when we discovered one of the planes used in the attacks, had departed from Newark (the airport I've used most frequently in my life). Tuesday morning, I was on my normal commute to school, stuck in rush hour traffic, when the woman on Hot 97 (local music station) reported a plane hitting one of the Twin Towers. I distinctly remember thinking, "What moron flies that low, near the city?", assuming it was a small personal plane (in all honesty, I pictured an old fashioned bi-plane). Irregardless, I figured my rap station wasn't the best source for news, and decided to switch to a local news station. When I changed the station, an eyewitness was in mid conversation describing the crash, when he suddenly says, "Oh S**t, another plane just hit the buildings!" The announcer immediately cut the man off and started fumbling around, saying how the station couldn't confirm the man's claims. Within seconds however, the announcer says, that in fact, they had confirmed the eyewitness report with the AP. In that instant, everything changed. It was as if everyone around me, including the announcer (by the tone of his voice), had realized that there was no way that these crashes could be mistakes; these were deliberate attacks. People started pulling over and hopping out of their cars and whipping out cell phones, I imagine, in effort to locate family members, or friends. I continued on my way to school, and met up with a professor, that was my partner for a Freshman course, we were assigned to co-teach that morning. The campus was a bizzar mix of silence and chaos. There were some people still in classrooms, completely unaware of what was going on. In contrast, there were other areas where people were buzzing around, frantically trying to call loved ones, or groups of people, huddled around radios. The professor and I decided to head over to the University Center, where there were several tvs. It was already crowded in the lobby as we entered, and everyone was glued to their spot, looking up at the pictures of the black smoke, billowing out the side of the towers. I can remember thinking, "It'll be ok. They'll evacuate the buildings and be able to repair the damage." Only a few moments after that thought, I watched the first tower come tumbling down. The whole crowd gasped, and people started crying (including me), and hugging strangers. Not long after, the second tower collapsed, and we decided to head back to the office, still in shock.
Naturally, the University announced it would be canceling classes, so the professor and I went to our classroom to inform any students that might show up unaware. The eight o'clock classes were all letting out, and most of those people were learning about the attacks for the first time. Some of our students showed up, and I remember one girl in particular, that was in total distress, because they had closed off the city, and she had no way home and had not been able to reach her family by phone. I offered for her to come stay with me, if she needed too, but she declined. Thankfully, her family was fine, in the end. Back at the office, a good friend of mine, was also in a panic, over his dad, who was also eventually found. I called my boyfriend (at the time), to see if he had heard all that was going on. He worked for the phone company, so I was unsure if he'd had a chance to hear the news (because he was constantly in and out of his van, and various buildings). He was working in Newark at the time, and turns out that he was actually able to witnessed the buildings fall firsthand. It all seemed so surreal. With classes canceled, and work closing (I worked on campus), I decided to track down my best friend. It happened to be her twentieth birthday that day. Once I found her, and her boyfriend, we headed to her house and spent the rest of the day, glued to CNN. I'm sure it's one birthday she'll never forget.
In the weeks that followed, I stopped watching the news. I had begun having nightmares, of the poor people jumping from the burning buildings. I couldn't stomach seeing the images after a few days. Instead, I decided to go around New Jersey, and photograph all the makeshift memorials, that had popped up everywhere. The NJ Historical Society had asked my professor if he would help them document the memorials. Both my professor and I were interviewed byNJN, which is a a local tv station, about our roles in the project. A few of my classmates and I had our photographs displayed at the NJ Historical Society, in Newark, as part of a tribute exhibition. Ironically, the thing I remember most about the exhibit, was not so much the art, as book they had, listing all the victims from New Jersey and their respective towns. I can remember flipping through the pages and thinking about all the families that had been impacted, and how many lived in town I knew. It was a very moving experience.
About a week after the attacks, my stepmother began working with FEMA, as a crisis counselor. She worked under a special grant, named Project Phoenix, that provided free counseling services for victims' families, survivors and all the first responders. They were set up in Jersey City, and would ferry the people back and forth, to allow people to place mementos at the sight, and grieve. My mom can't talk about it much (for confidentiality reasons), but I remember some of the horrific descriptions of the site itself and can only imagine the terribly sad things she witnessed. I was (still am) very proud of her, for the work she did under that grant, which lasted at least a year (I'm a bit fuzzy on details). I'm sure she feels that way too. So many people (myself included) want to help, in a time of crisis, but don't know how, or can't. It's horrible, feeling helpless. The only downside (if you consider it that way), to my mom working at ground zero, is that she is now one of thousands, that has to be concerned (and has been examined for) with health related issues, due to all the toxins that were in the air. I'm sure all the first responders, survivors, and people like my mom, have long lasting emotional, and/or physical reminders of that day.
When I think about 9/11, or my accident, I can't help but still be in shock at how fast life can change. My whole life I've heard people say stuff, like "You never know, I could get hit by a bus tomorrow." However, when you're young and healthy, it's so easy to take life for granted. The unfortunate truth of the matter is, life can change in the blink of an eye; it doesn't matter how young, or healthy you are. Both September 11, 2001 and my accident are proof of that fact. The people that died in those towers were minding their own business, working. I'm sure the great majority woke up that morning, and started the day like any other day, and naturally, had no clue that they would never return home again. Just as, a split second mistake changed my life forever. One minute, I was healthy, happy, on my feet, and the next I was paralyzed, forever dependent on others, and all of my dreams were shattered. Although I didn't die, there is a great part of me that feels missing, and I do mourn over the person I was. In many ways, my life ended the moment I broke my neck; the life I had built, and the plans I had made. In retrospect, I wish I would have savored every moment on my feet. Knowing what I know now, magnifies all of my regrets. Every mistake, moment, or opportunity I didn't take, or missed out, seems intensified, because I know I'll never be able to have a second chance at experiencing them. Once time has passed, you can never get it back.
Some people try to protect themselves from disaster by avoiding life all together. I can remember my parents being wary of me going back into the city, after 9/11, and didn't agree with me traveling overseas in 2003. They were certainly not alone in their fears. Many people to this day, avoid big cities and/or flying, for fear of attack. I don't agree with that mentality, because I think it plays into what terrorists want; for us to stop living. I think living in fear, is the exact opposite of the lessons we should learn from catastrophic, life changing events. That is, that life is temporary, and that no one knows what tomorrow will bring. As cliche as that might sound, it is the truth and there are a million ways that life can change, and catch you completely off guard. Of course, it is important to be cautious, and mindful of the decisions you make, but it is equally important to recognize that there are always going to be factors outside of your control. For those people that are fortunate enough to be healthy and be able to care for themselves, the message, is to really enjoy life, and recognize how lucky you truly are. Once your health is gone, all the "problems" you think you have become secondary. Once you're gone, you're gone, so embrace your health and life, while you have it. Take the time to reflect and be grateful for what matters most, your health and the people you love.
Although I thankfully did not lose a loved one that day, I know of people that have, within my community and even had a student, that had lost her father. I'm sure, for those families that did lose a loved one, the harsh reality of life's transient nature is still a raw, painful reality. While I'm sure nine years seems like a short time, to the victims families, I'm guessing most people have put the events of that day in the back of their minds. Yes, everyone else pays their respects, and honors 9/11 as a memorial, but I doubt most people take the time to reflect on the lessons of that day, or give thanks for the fact that they are still healthy, and alive. For most people, the after effects of 9/11 are a distant memory, as is the thought that each day is a gift. People tend to forget life's lessons, unless they have a constant reminder of its consequences. I mention my accident, as an example, because I live with the after effects of that day, every day. I can't put that day in the back of my mind, just as those people who were directly effected, by the 9/11 attacks, will be reminded of that day, every day.
I'm sure everyone old enough to remember the day of September 11, 2001, will never forget the details of that day. Living on the East Coast, New Jersey specifically, had a huge impact on how I was effected personally, by the terror attacks of that day, and how the attacks still effect me to this day. The Twin Towers, and lower Manhattan, had been a familiar sight my entire life. Growing up in Union County, I could often see the NY skyline, on clear days. My family moved a bit further south, when I entered high school, but about half of my neighbors in Old Bridge were all former New Yorkers, and most of them commute to the city every morning, by bus. My senior year, I dated a boy from Queens and went into New York regularly. He taught me how to navigate the subway system, which I love, and miss riding. As a college student, I took the train into the city at least once a month, my entire four years. I always had assignments to complete, by visiting the museums and galleries, plus I loved spending time downtown in Chinatown and Little Italy. Many times, I'd take the train into Manhattan by myself, and spend all day at the M.E.T. working on term papers, or just for fun. One of my favorite things to do was bring my sketchbook with me and just people watch, and wander the Egyptian and Asian sections of the M.E.T. Chinatown was my spot for my anime fix. Back then (1999-2003), anime (Japanese animation) was nowhere near as popular as it is now, and fans had to wait months, or years for current shows to be imported. I had a favorite shop on Lafayette St., where I'd buy ten to twenty VHS tapes at a clip. I was such a good customer that the shop keepers actually recognized me by face. A perfect day would be spent with my best friends, perusing the Chinatown shops, for anime, posters and memorabilia, then hit Little Italy for some coconut gelato, and take the train home, with my arms full of bags stuffed with all of my finds.
It just so happens, that I was taking a black & white photography course, in the fall of 2001. I had gone to lower Manhattan the Sunday before the attacks, to buy all of my photography supplies. That train ride was the last time I saw the towers standing, in person. Looking back, I'd like to kick myself for not photographing them, but who could've imagined they wouldn't always be there? The following day, my brother and ex-boyfriend flew into Newark airport, on a return trip, from FL and I remember my mom (step-mom) mentioning something about a small fire at the airport, which also felt eerie the following day, when we discovered one of the planes used in the attacks, had departed from Newark (the airport I've used most frequently in my life). Tuesday morning, I was on my normal commute to school, stuck in rush hour traffic, when the woman on Hot 97 (local music station) reported a plane hitting one of the Twin Towers. I distinctly remember thinking, "What moron flies that low, near the city?", assuming it was a small personal plane (in all honesty, I pictured an old fashioned bi-plane). Irregardless, I figured my rap station wasn't the best source for news, and decided to switch to a local news station. When I changed the station, an eyewitness was in mid conversation describing the crash, when he suddenly says, "Oh S**t, another plane just hit the buildings!" The announcer immediately cut the man off and started fumbling around, saying how the station couldn't confirm the man's claims. Within seconds however, the announcer says, that in fact, they had confirmed the eyewitness report with the AP. In that instant, everything changed. It was as if everyone around me, including the announcer (by the tone of his voice), had realized that there was no way that these crashes could be mistakes; these were deliberate attacks. People started pulling over and hopping out of their cars and whipping out cell phones, I imagine, in effort to locate family members, or friends. I continued on my way to school, and met up with a professor, that was my partner for a Freshman course, we were assigned to co-teach that morning. The campus was a bizzar mix of silence and chaos. There were some people still in classrooms, completely unaware of what was going on. In contrast, there were other areas where people were buzzing around, frantically trying to call loved ones, or groups of people, huddled around radios. The professor and I decided to head over to the University Center, where there were several tvs. It was already crowded in the lobby as we entered, and everyone was glued to their spot, looking up at the pictures of the black smoke, billowing out the side of the towers. I can remember thinking, "It'll be ok. They'll evacuate the buildings and be able to repair the damage." Only a few moments after that thought, I watched the first tower come tumbling down. The whole crowd gasped, and people started crying (including me), and hugging strangers. Not long after, the second tower collapsed, and we decided to head back to the office, still in shock.
Naturally, the University announced it would be canceling classes, so the professor and I went to our classroom to inform any students that might show up unaware. The eight o'clock classes were all letting out, and most of those people were learning about the attacks for the first time. Some of our students showed up, and I remember one girl in particular, that was in total distress, because they had closed off the city, and she had no way home and had not been able to reach her family by phone. I offered for her to come stay with me, if she needed too, but she declined. Thankfully, her family was fine, in the end. Back at the office, a good friend of mine, was also in a panic, over his dad, who was also eventually found. I called my boyfriend (at the time), to see if he had heard all that was going on. He worked for the phone company, so I was unsure if he'd had a chance to hear the news (because he was constantly in and out of his van, and various buildings). He was working in Newark at the time, and turns out that he was actually able to witnessed the buildings fall firsthand. It all seemed so surreal. With classes canceled, and work closing (I worked on campus), I decided to track down my best friend. It happened to be her twentieth birthday that day. Once I found her, and her boyfriend, we headed to her house and spent the rest of the day, glued to CNN. I'm sure it's one birthday she'll never forget.
In the weeks that followed, I stopped watching the news. I had begun having nightmares, of the poor people jumping from the burning buildings. I couldn't stomach seeing the images after a few days. Instead, I decided to go around New Jersey, and photograph all the makeshift memorials, that had popped up everywhere. The NJ Historical Society had asked my professor if he would help them document the memorials. Both my professor and I were interviewed byNJN, which is a a local tv station, about our roles in the project. A few of my classmates and I had our photographs displayed at the NJ Historical Society, in Newark, as part of a tribute exhibition. Ironically, the thing I remember most about the exhibit, was not so much the art, as book they had, listing all the victims from New Jersey and their respective towns. I can remember flipping through the pages and thinking about all the families that had been impacted, and how many lived in town I knew. It was a very moving experience.
About a week after the attacks, my stepmother began working with FEMA, as a crisis counselor. She worked under a special grant, named Project Phoenix, that provided free counseling services for victims' families, survivors and all the first responders. They were set up in Jersey City, and would ferry the people back and forth, to allow people to place mementos at the sight, and grieve. My mom can't talk about it much (for confidentiality reasons), but I remember some of the horrific descriptions of the site itself and can only imagine the terribly sad things she witnessed. I was (still am) very proud of her, for the work she did under that grant, which lasted at least a year (I'm a bit fuzzy on details). I'm sure she feels that way too. So many people (myself included) want to help, in a time of crisis, but don't know how, or can't. It's horrible, feeling helpless. The only downside (if you consider it that way), to my mom working at ground zero, is that she is now one of thousands, that has to be concerned (and has been examined for) with health related issues, due to all the toxins that were in the air. I'm sure all the first responders, survivors, and people like my mom, have long lasting emotional, and/or physical reminders of that day.
When I think about 9/11, or my accident, I can't help but still be in shock at how fast life can change. My whole life I've heard people say stuff, like "You never know, I could get hit by a bus tomorrow." However, when you're young and healthy, it's so easy to take life for granted. The unfortunate truth of the matter is, life can change in the blink of an eye; it doesn't matter how young, or healthy you are. Both September 11, 2001 and my accident are proof of that fact. The people that died in those towers were minding their own business, working. I'm sure the great majority woke up that morning, and started the day like any other day, and naturally, had no clue that they would never return home again. Just as, a split second mistake changed my life forever. One minute, I was healthy, happy, on my feet, and the next I was paralyzed, forever dependent on others, and all of my dreams were shattered. Although I didn't die, there is a great part of me that feels missing, and I do mourn over the person I was. In many ways, my life ended the moment I broke my neck; the life I had built, and the plans I had made. In retrospect, I wish I would have savored every moment on my feet. Knowing what I know now, magnifies all of my regrets. Every mistake, moment, or opportunity I didn't take, or missed out, seems intensified, because I know I'll never be able to have a second chance at experiencing them. Once time has passed, you can never get it back.
Some people try to protect themselves from disaster by avoiding life all together. I can remember my parents being wary of me going back into the city, after 9/11, and didn't agree with me traveling overseas in 2003. They were certainly not alone in their fears. Many people to this day, avoid big cities and/or flying, for fear of attack. I don't agree with that mentality, because I think it plays into what terrorists want; for us to stop living. I think living in fear, is the exact opposite of the lessons we should learn from catastrophic, life changing events. That is, that life is temporary, and that no one knows what tomorrow will bring. As cliche as that might sound, it is the truth and there are a million ways that life can change, and catch you completely off guard. Of course, it is important to be cautious, and mindful of the decisions you make, but it is equally important to recognize that there are always going to be factors outside of your control. For those people that are fortunate enough to be healthy and be able to care for themselves, the message, is to really enjoy life, and recognize how lucky you truly are. Once your health is gone, all the "problems" you think you have become secondary. Once you're gone, you're gone, so embrace your health and life, while you have it. Take the time to reflect and be grateful for what matters most, your health and the people you love.
Tuesday, September 7, 2010
What About Research?
Someone asked me if I've been to the Rutger's Keck Center, here in NJ, in response to my recent blogs. The Keck Center is dedicated to finding a cure to paralysis. Dr. Wise Young is the Founding Director, and holds open house sessions, where he gives updates on their latest research. Dr. Young also pioneered a SCI research program in China, due in part, to all of the restrictions and set-backs in the field, here in the USA. I've been following his work since my accident.
Here is what I wrote, in response to the suggestion to attend Dr. Young's lectures:
I haven't been to the Keck center. I live in Freehold, which is not far from Rutgers, and would really like to go. Every time I've considered it, it somehow falls through. I try to keep up to date with "cure" info through the Care Cure forums & other websites, like the CDRF. I have a lot of respect & gratitude for Dr. Young and other researchers in the field. I'm just at the point where I can't see any practical implications for myself. I'm sure people will not have to suffer from paralysis, some day, and that's certainly worth fighting for. I just don't think that there's much probability that, that "someday" will be anytime soon.
I've always been a planner. I thrived on organization and time management, and owe a lot of success to those skills. In college, I wrote papers weeks before they were due. As a teacher, I would plan out my entire sequence of lessons, for the year, for each grade level (I taught art, grades1-5), in August. In fact, the Friday before my accident, I had been working on lesson plans for an "art night" exhibit that I was planning for what would have been the following year. I still have file folders in my file cabinets, marked "2005, 2006, & 2007" with projected budgets and vacation plans. It's my planning that kept me focus and gave me the peace of mind in always knowing (or so I thought) what was around the next corner. Having control (or the illusion of control) reduced my stress, because I always felt prepared. Unfortunately, it's those rigid, perfectionist type qualities in me, that make is so hard for me to deal with my accident. I went from being a borderline "control freak", to having almost no control over my life, whatsoever. Learning to "go with the flow" has been a tremendous struggle for me. My accident shattered the illusion of control, I thought I had, and opened my eyes to the reality, that all the preparation, planning and effort in the world meant nothing, at the end of the day. Most people can't even begin to grasp the reality of how fragile their lives are, because it such a scary thought. It forces us all to realize how powerless we are, to so many aspects of life.
Not knowing, when, or if I'll ever be cured, is terrifying. The prospect of living like this for decades is unacceptable, to me. It's funny (well, to me, and my warped sense of humor) but, I can remember setting a sort of "time line" for myself, during my stay in Kessler. Ten years, has been the limit, in my mind, since that day. I thought, "I'll try my best to be strong & give myself ten years, to be patient and see what science will bring. If they do find a cure, I'll still be young enough to fulfill my dreams, and if not, I'll have given enough to feel satisfied with my effort." As morbid, or crazy as that time line might seem, it has served as a light at the end of the tunnel for me, and given me something somewhat tangible to deal with. I guess, it's been my way of giving myself the illusion of control over my life, even though, deep down I know anything could happen. Having a limit, gives me a tiny bit of comfort. Although I don't have a specific game plan, for what will happen when I hit that ten year marker, it's just my attempt at creating a goal, that I can focus on. Here I am, at the halfway point, of my illusionarytime line, and I don't feel as though researchers are realistically any closer to curing me, than when I was injured. It makes me feel like there's a very bleak future awaiting me. Without a cure, that means I'm stuck living with what I have now. What I have right now, doesn't seem nearly enough, to want to keep struggling, for any huge length of time. Even the thought of five more years, seems near impossible to me, at the moment. Yet, if I knew 100% that, let's say, on June 1, 2018, at 3:00pm, I'd be up and moving, and caring for myself again, I know I'd have the strength to hang in there. Even the worst criminals get a definitive sentence, and know what to expect of their fate. Right now, as far as I know, I've been given a life sentence. My sentence could potentially be shorter, but no one can give me concrete answers, and the current conditions are horrible.
I realize, I'm looking for answers that no one can give. I know that no advice will solve my dilemma. I don't really know what it is I'm seeking, in terms of help. Honestly, I just want some one to save me, and make this all go away, or for me to wake up, and still have it be the morning of June 4th, 2005. I know that's not going to happen, but I guess, I also want the average person to hear my pain, and stand up and fight for me, and everyone else with paralysis. I want people to open their eyes, and change their priorities (by putting finding cures and alleviating suffering at the top of their lists).
Related links:
1. Keck Center- http://keck.rutgers.edu/center/center.html
2. Just A Dollar Campaign- http://www.adollarplease.org/
Here is what I wrote, in response to the suggestion to attend Dr. Young's lectures:
I haven't been to the Keck center. I live in Freehold, which is not far from Rutgers, and would really like to go. Every time I've considered it, it somehow falls through. I try to keep up to date with "cure" info through the Care Cure forums & other websites, like the CDRF. I have a lot of respect & gratitude for Dr. Young and other researchers in the field. I'm just at the point where I can't see any practical implications for myself. I'm sure people will not have to suffer from paralysis, some day, and that's certainly worth fighting for. I just don't think that there's much probability that, that "someday" will be anytime soon.
I've always been a planner. I thrived on organization and time management, and owe a lot of success to those skills. In college, I wrote papers weeks before they were due. As a teacher, I would plan out my entire sequence of lessons, for the year, for each grade level (I taught art, grades1-5), in August. In fact, the Friday before my accident, I had been working on lesson plans for an "art night" exhibit that I was planning for what would have been the following year. I still have file folders in my file cabinets, marked "2005, 2006, & 2007" with projected budgets and vacation plans. It's my planning that kept me focus and gave me the peace of mind in always knowing (or so I thought) what was around the next corner. Having control (or the illusion of control) reduced my stress, because I always felt prepared. Unfortunately, it's those rigid, perfectionist type qualities in me, that make is so hard for me to deal with my accident. I went from being a borderline "control freak", to having almost no control over my life, whatsoever. Learning to "go with the flow" has been a tremendous struggle for me. My accident shattered the illusion of control, I thought I had, and opened my eyes to the reality, that all the preparation, planning and effort in the world meant nothing, at the end of the day. Most people can't even begin to grasp the reality of how fragile their lives are, because it such a scary thought. It forces us all to realize how powerless we are, to so many aspects of life.
Not knowing, when, or if I'll ever be cured, is terrifying. The prospect of living like this for decades is unacceptable, to me. It's funny (well, to me, and my warped sense of humor) but, I can remember setting a sort of "time line" for myself, during my stay in Kessler. Ten years, has been the limit, in my mind, since that day. I thought, "I'll try my best to be strong & give myself ten years, to be patient and see what science will bring. If they do find a cure, I'll still be young enough to fulfill my dreams, and if not, I'll have given enough to feel satisfied with my effort." As morbid, or crazy as that time line might seem, it has served as a light at the end of the tunnel for me, and given me something somewhat tangible to deal with. I guess, it's been my way of giving myself the illusion of control over my life, even though, deep down I know anything could happen. Having a limit, gives me a tiny bit of comfort. Although I don't have a specific game plan, for what will happen when I hit that ten year marker, it's just my attempt at creating a goal, that I can focus on. Here I am, at the halfway point, of my illusionarytime line, and I don't feel as though researchers are realistically any closer to curing me, than when I was injured. It makes me feel like there's a very bleak future awaiting me. Without a cure, that means I'm stuck living with what I have now. What I have right now, doesn't seem nearly enough, to want to keep struggling, for any huge length of time. Even the thought of five more years, seems near impossible to me, at the moment. Yet, if I knew 100% that, let's say, on June 1, 2018, at 3:00pm, I'd be up and moving, and caring for myself again, I know I'd have the strength to hang in there. Even the worst criminals get a definitive sentence, and know what to expect of their fate. Right now, as far as I know, I've been given a life sentence. My sentence could potentially be shorter, but no one can give me concrete answers, and the current conditions are horrible.
I realize, I'm looking for answers that no one can give. I know that no advice will solve my dilemma. I don't really know what it is I'm seeking, in terms of help. Honestly, I just want some one to save me, and make this all go away, or for me to wake up, and still have it be the morning of June 4th, 2005. I know that's not going to happen, but I guess, I also want the average person to hear my pain, and stand up and fight for me, and everyone else with paralysis. I want people to open their eyes, and change their priorities (by putting finding cures and alleviating suffering at the top of their lists).
Related links:
1. Keck Center- http://keck.rutgers.edu/center/center.html
2. Just A Dollar Campaign- http://www.adollarplease.org/
Sunday, September 5, 2010
Response to Feedback: I'm Not Doing So Good :(
Thank you for your responses to my previous blog ("I'm Not Doing So Good"). My blogs post onto several sites, from Blogger.com so I thought it'd be easiest to post this here, as a separate blog entry. That way I can reply to everyone that left me feedback in one place, versus posting a bunch of separate comments. Besides, I tend to write too much to be accepted in the normal "comment" boxes. >.<
I'm not even sure what I'm looking for, in terms if advice. I realize that words can only do so much. I was forced to see a therapist, when I lived in the nursing facility, and often considered it more of an annoyance, than a help. Partly because, I had an AB (able bodied) person sitting across from me, giving me advice. It was infuriating at times, and I couldn't help but think, "Easy for you to say. You get to punch out and leave all this sadness behind at the end of the day. You get to go home to your normal life and care for yourself. You have the freedom to pick up and do things, as you please and the independence to do things for yourself. How on earth can you even begin to empathize with me, or have the audacity to tell me what I should do!" I've been trying my best to cope with everything, in my own way and rely on medicine to take away some of the overwhelming thoughts, or sadness. Unfortunately, my way doesn't seem to be working anymore and I feel myself sliding down, deeper and deeper into a dark hole.
There are times when I think, "Enough is enough. I've tried my best. It's not fair for other people to expect me to live this way. If my loved ones could (anyone for that matter) live a few days in my shoes, they'd understand and willingly let me go." On the other hand, I feel like giving up would just be another failure. I beat myself for my accident, and already feel as though I've ruined my life. To give up, on top of the mistake of my accident, sometimes makes me feel like I'd be an even bigger disappointment, than I already am (to myself, if no one else).
Then there's the fear of the unknown and what consequences would await me, if I gave up my will to live. I don't have a strong belief in any particular faith, and although I've been actively searching (and praying) for a relationship with God (if he, or she, or they exist), but have yet to find any answers. Faith isn't something anyone else can instill in me; if that were the case, I'd be a devout Catholic. I feel as though a faith in God would give me strength and inner peace, in believing that there really is some bigger purpose, or plan, and some sort of justification, for all of my pain. I think a faith in God would also give me the peace of mind that there's something better waiting for me, when I die. Without a heaven, it seems so pointless to even try. I mean, why prolong my suffering, just to die and go into non-existence? Then again, if there is a heaven, what am sitting around for? Why stay here, if I could be happy on the other side?
These are all questions that no one can answer for me.
The unknown adds a lot of stress, because it leaves me full of doubt, and guilt, over making choices. In a way, my accident drained me of confidence in my ability to make good choices. After five and a half years of suffering with the consequences, of one stupid, split second decision, it terrifies me to think that, giving up could be viewed as the wrong choice. It probably sounds silly, to some, but I'm terrified of screwing up my afterlife (if there is one), as horribly as I've already done with my life. Don't get me wrong, I'm not saying Im a horrible person. Actually, I think I'm a pretty good person. I was a good student, hard worker, law abiding citizen, generous and kind person. However, my accident is proof, to me, that none of that matters, if the mistake you make is bad enough. It's a philosophical/theological dilemma, that only adds to my confusion and stress, about my current situation. The lack of a relationship, or true belief in God, also adds to my overwhelming sense of emptiness, and loneliness. In a way, it feels like the ultimate rejection. Here I am, reading books (of many different ideologies), holy scriptures, praying and begging, with all my heart and soul, and all I get in return is silence and more of the same old stuff.
The unknown of the future is stressful as well. When I first got hurt, I believed strongly in a cure. I was hearing and reading researchers talk about all sorts of promising research. The timespan of "five to ten" years, that I heard countless times, seemed tolerable. I can remember laying in bed, at Kessler rehab, saying to two of my best friends, "Even if it takes a full ten years, I'll only be thirty-five. I'll still be young enough to do everything I want to do." Yet, here we are, five years later, and most of what I've read and heard has been disappointment after disappointment. President Bush vetoed the ESC bill, making research in that field slow to snail's pace. The CDRPA, that could've boosted support for research in many areas of spinel cord injury research, was held up in the Senate for years. Even now, there's a fight to overturn President Obama's support for research. Ironically, some of the most important, promising initiatives to support research for a cure, have been bogged down, by the selfishness and ignorance of only a few individuals. It makes me want to scream, and lash out, for every AB person to hear. I want every AB person to see and feel my pain, and understand why a cure matters. I wish there were a way to have selfish individuals (like the most recent road blocker, Judge Royce Lamberth) experience one week of living with quadriplegia, not to gloat in their suffering, not for revenge, but for understanding. I'm 100% positive that one week (without knowing if, or when a cure would be found) would be enough to inspire anyone to support research. The lack of a cure, or evidence of even a remotely close cure, that I could give me back my independence, has chipped away at my hope over time. I currently, have very little hope left, for any cure that could benefit me, in my lifetime.
My spinal cord injury has given me a perspective on life, that allows me to see the most basic, most important, most valuable aspects of life, that most people take for granted. Unfortunately, the majority of people are blinded by money, power, material possessions, and pride, and have lost the ability to see the obvious order of what their priorities should be; priorities that value the living, improve quality of life and focus on helping others. Either that, or people are so self absorbed, that they can't see the suffering around them, or don't care, until it directly effects their lives. The irony is, anyone can be injured, at anytime. Life can change in the matter of seconds. Just because you are healthy, and on your feet today, is no guarantee that tomorrow you won't be living life in a wheelchair. Finding a cure to paralysis should be among the top priorities for all humanity, not just those of us living with paralysis, at this moment. That's why my message, is almost always aimed at the average AB person. I'm in no way a role model, and have too many struggles, to presume I can give much coping advise to other disabled people. I just want to open AB people's eyes and minds, to what it means to live with paralysis. I'm crying out, "Look at me! Look at what I have to go through everyday. Help me!" I want the average person to look at my situation, and really have it sink in, that I could be anybody; that they could be me.
As far as writing goes, thank you for your compliments. Writing has always been helpful for me. I've kept journals, on and off, since I was eight. I've thought about pursuing bigger writing goals, like writing a book. I've even started working on a book, several times. I tend to hit a wall, when I have to dredge up the really painful stuff, and as time goes on, my memories are getting blurry (regarding details of the first couple of years post accident). Lately, I've been so depressed, that writing itself, has become painful. Having to focus on my thoughts and write them down, has been making me want to switch gears, find distraction and ignore my feelings. Writing my thoughts down forces me to shine a light on a lot of the things I've been trying to avoid thinking about. My iPad has given me some more freedom, to write at various times of the day, so sometimes I can jot down small pieces of what I'm going through. The ability to be more spontaneous helps. I uploaded the Dragon dictation app recently and I'm waiting for a new headset with built in mic to be delivered. Being able to blurt out my thoughts, might help, because it won't take as much effort to type and therefore, give me less excuses to avoid sharing. As embarrassing as it can be sometimes, I feel it is important for me to put myself (through expressing my feelings) out there. I think people are more likely to help, if they can put a face to a problem. I'm not just an example in a book. I'm living, breathing, and feeling, and can give a personal perspective of paralysis, that a medical definition, or diagnosis, fails to give. I'm trying my best, that's all I can do.
I'm not even sure what I'm looking for, in terms if advice. I realize that words can only do so much. I was forced to see a therapist, when I lived in the nursing facility, and often considered it more of an annoyance, than a help. Partly because, I had an AB (able bodied) person sitting across from me, giving me advice. It was infuriating at times, and I couldn't help but think, "Easy for you to say. You get to punch out and leave all this sadness behind at the end of the day. You get to go home to your normal life and care for yourself. You have the freedom to pick up and do things, as you please and the independence to do things for yourself. How on earth can you even begin to empathize with me, or have the audacity to tell me what I should do!" I've been trying my best to cope with everything, in my own way and rely on medicine to take away some of the overwhelming thoughts, or sadness. Unfortunately, my way doesn't seem to be working anymore and I feel myself sliding down, deeper and deeper into a dark hole.
There are times when I think, "Enough is enough. I've tried my best. It's not fair for other people to expect me to live this way. If my loved ones could (anyone for that matter) live a few days in my shoes, they'd understand and willingly let me go." On the other hand, I feel like giving up would just be another failure. I beat myself for my accident, and already feel as though I've ruined my life. To give up, on top of the mistake of my accident, sometimes makes me feel like I'd be an even bigger disappointment, than I already am (to myself, if no one else).
Then there's the fear of the unknown and what consequences would await me, if I gave up my will to live. I don't have a strong belief in any particular faith, and although I've been actively searching (and praying) for a relationship with God (if he, or she, or they exist), but have yet to find any answers. Faith isn't something anyone else can instill in me; if that were the case, I'd be a devout Catholic. I feel as though a faith in God would give me strength and inner peace, in believing that there really is some bigger purpose, or plan, and some sort of justification, for all of my pain. I think a faith in God would also give me the peace of mind that there's something better waiting for me, when I die. Without a heaven, it seems so pointless to even try. I mean, why prolong my suffering, just to die and go into non-existence? Then again, if there is a heaven, what am sitting around for? Why stay here, if I could be happy on the other side?
These are all questions that no one can answer for me.
The unknown adds a lot of stress, because it leaves me full of doubt, and guilt, over making choices. In a way, my accident drained me of confidence in my ability to make good choices. After five and a half years of suffering with the consequences, of one stupid, split second decision, it terrifies me to think that, giving up could be viewed as the wrong choice. It probably sounds silly, to some, but I'm terrified of screwing up my afterlife (if there is one), as horribly as I've already done with my life. Don't get me wrong, I'm not saying Im a horrible person. Actually, I think I'm a pretty good person. I was a good student, hard worker, law abiding citizen, generous and kind person. However, my accident is proof, to me, that none of that matters, if the mistake you make is bad enough. It's a philosophical/theological dilemma, that only adds to my confusion and stress, about my current situation. The lack of a relationship, or true belief in God, also adds to my overwhelming sense of emptiness, and loneliness. In a way, it feels like the ultimate rejection. Here I am, reading books (of many different ideologies), holy scriptures, praying and begging, with all my heart and soul, and all I get in return is silence and more of the same old stuff.
The unknown of the future is stressful as well. When I first got hurt, I believed strongly in a cure. I was hearing and reading researchers talk about all sorts of promising research. The timespan of "five to ten" years, that I heard countless times, seemed tolerable. I can remember laying in bed, at Kessler rehab, saying to two of my best friends, "Even if it takes a full ten years, I'll only be thirty-five. I'll still be young enough to do everything I want to do." Yet, here we are, five years later, and most of what I've read and heard has been disappointment after disappointment. President Bush vetoed the ESC bill, making research in that field slow to snail's pace. The CDRPA, that could've boosted support for research in many areas of spinel cord injury research, was held up in the Senate for years. Even now, there's a fight to overturn President Obama's support for research. Ironically, some of the most important, promising initiatives to support research for a cure, have been bogged down, by the selfishness and ignorance of only a few individuals. It makes me want to scream, and lash out, for every AB person to hear. I want every AB person to see and feel my pain, and understand why a cure matters. I wish there were a way to have selfish individuals (like the most recent road blocker, Judge Royce Lamberth) experience one week of living with quadriplegia, not to gloat in their suffering, not for revenge, but for understanding. I'm 100% positive that one week (without knowing if, or when a cure would be found) would be enough to inspire anyone to support research. The lack of a cure, or evidence of even a remotely close cure, that I could give me back my independence, has chipped away at my hope over time. I currently, have very little hope left, for any cure that could benefit me, in my lifetime.
My spinal cord injury has given me a perspective on life, that allows me to see the most basic, most important, most valuable aspects of life, that most people take for granted. Unfortunately, the majority of people are blinded by money, power, material possessions, and pride, and have lost the ability to see the obvious order of what their priorities should be; priorities that value the living, improve quality of life and focus on helping others. Either that, or people are so self absorbed, that they can't see the suffering around them, or don't care, until it directly effects their lives. The irony is, anyone can be injured, at anytime. Life can change in the matter of seconds. Just because you are healthy, and on your feet today, is no guarantee that tomorrow you won't be living life in a wheelchair. Finding a cure to paralysis should be among the top priorities for all humanity, not just those of us living with paralysis, at this moment. That's why my message, is almost always aimed at the average AB person. I'm in no way a role model, and have too many struggles, to presume I can give much coping advise to other disabled people. I just want to open AB people's eyes and minds, to what it means to live with paralysis. I'm crying out, "Look at me! Look at what I have to go through everyday. Help me!" I want the average person to look at my situation, and really have it sink in, that I could be anybody; that they could be me.
As far as writing goes, thank you for your compliments. Writing has always been helpful for me. I've kept journals, on and off, since I was eight. I've thought about pursuing bigger writing goals, like writing a book. I've even started working on a book, several times. I tend to hit a wall, when I have to dredge up the really painful stuff, and as time goes on, my memories are getting blurry (regarding details of the first couple of years post accident). Lately, I've been so depressed, that writing itself, has become painful. Having to focus on my thoughts and write them down, has been making me want to switch gears, find distraction and ignore my feelings. Writing my thoughts down forces me to shine a light on a lot of the things I've been trying to avoid thinking about. My iPad has given me some more freedom, to write at various times of the day, so sometimes I can jot down small pieces of what I'm going through. The ability to be more spontaneous helps. I uploaded the Dragon dictation app recently and I'm waiting for a new headset with built in mic to be delivered. Being able to blurt out my thoughts, might help, because it won't take as much effort to type and therefore, give me less excuses to avoid sharing. As embarrassing as it can be sometimes, I feel it is important for me to put myself (through expressing my feelings) out there. I think people are more likely to help, if they can put a face to a problem. I'm not just an example in a book. I'm living, breathing, and feeling, and can give a personal perspective of paralysis, that a medical definition, or diagnosis, fails to give. I'm trying my best, that's all I can do.
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