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.
Saturday, September 4, 2010
Not Doing So Good :(
I haven't been doing too well, for some time now. My physical health hasn't been the greatest, which I'm sure has played its part in my overall decline. As many of you know, from reading my blogs, or living with paralysis yourselves, I have to deal with a certain amount of medical issues, on a weekly basis, that I struggle with, greatly. Even after five years of being injured, I've still yet to come to terms with needing help with personal hygiene & bathroom issues. I've yet to find a way, to "just deal" with having another adult shower me, dress me, and feed me. Worst of all, is the need for a catheter, bowel regime and constant fear of incontinence. They all bother me just as much as they did when I first got hurt. I try my best to block it all out, but instead of getting easier, it's becoming increasingly more difficult. Part of the reason, may be because, as time goes on I've had to deal with more & more related health issues, that are just wearing me down. I've had countless UTIs (despite trying to stay hydrated, taking various medications & attempting to be as sterile as possible), most of which, I've tried to tough out, without antibiotics, because they often render my bowel regime useless, which is ultimately more upsetting&can cause skin breakdown. There are times though, when I'm just too sick to ignore and either land myself in the hospital, or force me to breakdown and ask for an antibiotic. Even that is a hassle, because half the time, the laboratories kick back my specimen, without culturing it, because they think it's contaminated. Apparently, I live with a pretty outrageous amount of bugs in my system, because even though we explain it's from a catheter, I've had more than one lab reject my samples. So then, I'm stuck with taking an antibiotic that may, or may not clear up the infection, and the wonderful stress, of worrying about accidents. This is all on top of the dozen or so pills I take on a daily basis, just to stay somewhat functioning (mostly bowel & bladder related, with a couple anti-depressant, anti-anxiety meds).
Yesterday, I spent all day at the hospital for a UTI. I just took an antibiotic called Leviquin, about three weeks ago, that obviously didn't work. They took blood & urine, gave me a ridiculously strong IV antibiotic& a prescription. I was in the ER for about seven hours (two of which, were just spent waiting for an ambulance ride back to my apartment). The whole time, I'm trying my best not to freak out, or have a panic attack, because my absolute worst fears & experiences all revolve around the hospital. I spent the first year & a half, after my accident living in Robert Wood Johnson ICU, Kessler rehab, ST. Barnabas ICU, Cheshire nursing home, Morristown Memorial hospital and then back to the nursing home. Despite having daily visitors, most of the time, the large majority (mostly at night) was spent painfully, and terrifyingly, alone. I can't even begin to describe the loneliness, fear and sadness that I experienced, most nights. At times, I was literally at the brink of death, most times, just overwhelmed with loss and fear. I doubt anyone, has pleasant hospital memories, however, being hospitalized and totally paralyzed, feels like hell on earth. You are 100% at the mercy of the hospital staff, especially when you can't even hit a call bell, reposition yourself, get a drink, change the tv channel, work the bed controls, pick up the phone, or any other small comfort, that the average person can do. Plus, thanks to HIPA, I end up having to re-explain that I'm paralyzed, almost every time someone besides my nurse, or doctor enters the room. Honestly, I rather have staff read my chart, than have to explain why I can't make a fist, or raise my arm, or any other stupid thing. Even when I have family, or friends with me, I feel scared and lonely. I just want to be home, and I'm dreading the time when they'll have to inevitably leave me behind. The few times people stayed overnight with me, I still knew they'd eventually have to leave. Plus, I felt horrible, because I knew how uncomfortable & exhausted they must have been, trying to comfort me. As crazy as it might seem, I couldn't even watch a tv show or movie about the hospital, without feeling panicked. Although, thankfully, I haven't had to stay over night in the hospital, since I've been home, the fear is always there. Horribly, in the end, with or without visitors, I often still feel alone.
Short of having a person climb into bed with me, it's hard for me not feel alone. I can't feel people holding my hand. I can't feel much of anything. Other people with paralysis and therapists have said stuff like,"You can still feel your head, neck and shoulders.You can learn to substitue affection to the areas you can feel" and/or "intimacy is mostly in the mind." For me, paralysis has been extremely isolating and I feel extremely deprived. Not only do I feel emotionally cut off (because most people have no clue what it's like), but physically, alone. I so often, feel like I just want to be held and be able to embrace the person back. Not that a hug would really solve anything, I feel such a void in my life. A big part of that emptiness, is not having a signifigant other. Family and friends can only do so much, and although I love them and am tremendously thankful for the people in my life, there is ahuge, gaping emptiness inside of me. I miss having that other half, to hold me and make me feel safe. It's a different type of love and affection, and it's been lacking in my life for a very long time now. Sometimes, I feel as though, I'd be stronger and feel as though I would have more purpose, if I had a husband in my life. At the end of the day, my friends& family, all have their own lives, and I feel completely lost and empty. Part of my problem, is that I honestly still love my ex (the person I was with, when I was hurt) and our break-up isn't something I've been able to get past. Mostly because, we both feel like we'd be together, if I were never hurt. All my dreams were ripped out from underneath me overnight, and being with him was one of those dreams. The events that followed my accident, made it impossible for our relationship to work, and although I have no way of knowing how my life (or our relationship) would've turned out, up until this point, the abruptness of how it all ended, makes it unbearably difficult to move forward.
As unbearable as it's been without him, I'm full of doubts within myself as well. I don't know that I'd have been able to be there for him, if our situations were reversed, and that's an ugly reality, I didn't want to admit to myself. You think that love should be enough, but the reality is, that each case is unique and you really can't judge anyone, unless you've been in their shoes. Part of me feels like, if he truly loved me, we'd somehow be together. Another part of me says, I'm not sure how I'd handle it myself (in his shoes or even now, in my position). I don't really know how I'd deal with having a romantic relationship, on top of all of this. There's so much of my life, I'd want to shield, or hide, that I couldn't. I only know what I had, and recognize, it wouldn't be the same. Regardless of who I'd be with, the thought of letting anyone into my life in that way, both terrifies me and leaves me feeling very skeptical. Why would anyone want to willingly choose, to take on all the hardships that come along with my life? I'm trying so hard to run away from them myself, so why would anyone welcome them? Plus, there's my overwhelming sense of guilt, that I could never contribute even a fraction of what that person could. Also, there's my want to be with someone that's able bodied, because otherwise, I feel as though, it's just another friendship. How can I expect someone else to want something I don't even want for myself? Part of me feels like a bad person, for not being able to see past all the physical, but it's so much of the physical, nurturing aspect of a relationship, that I feel so lacking and that I miss.
My failed relationship with my ex, is just one of many hugely important goals/dreams that I've struggled with since my accident. There's the career I worked so hard for, achieved, then lost. Then, there's the dreams of marriage and children, I've had since I was a little girl; on top of ordinary goals, like owning a home, playing an active role in helping family & friends and common milestones. For the past five and a half years, I've been watching all of my friends accomplish the things I thought I'd have (and still desperately want). Every day, I see painful reminders of what I could've had, but ruined. It's not to say, I absolutely couldn't teach, get married, or even have children, in my condition. What most people fail to see, or understand, is that the aspects of' those dreams that I most looked forward to experiencing, would be gone. I can no longer do most of my favorite parts of my job, which include, the physical interaction with the materials, the hands on working & demonstration with the kids and the physical tasks of organizing, showing, managing and doing. Yes, the ideas are still there, but so much of what I loved, was making those ideas into reality. It's the kinesthetic, tactile sensations that I love most about art, and most of that is gone. Marriage and children, come with a ton of experiences that I'd completely miss out on. It kills me, to think I'll most likely never experience most of the things I've dreamed of my entire life. The compromises just seem so pale in comparison. I've looked forward to all the traditions of marriage, not just the piece of paper. I want to go try on wedding dresses in front of a million full length mirrors, WALK down the isle arm & arm with my dad, dance my wedding song with my husband, be carried through the threshold the night of my wedding, and make tons of love on my honeymoon. I've been dreaming, and wondering ever since I was a little girl, what it'd be like to be pregnant, feel my baby growing inside of me, having my husband rub my belly, decorate the nursery, go into labor, hold my baby in my arms, and breast feed. If I had a child, I looked forward to bathing it, feeding it, dressing it, rocking it to sleep and keeping it safe. I don't know that I could handle all the compromises and being a spectator. It breaks my heart, just thinking about it.
I've been struggling with all of these issues, since day one (June, 5, 2005). Instead of getting easier to cope, it's gotten harder and harder. Every year that passes, seems like a year lost, a dream gone forever. Every day that passes without a breakthrough, or a cure, it seems less hopeful. Every politician's decision or governmental set back to funding, seems like a punch to my face, like a personal attack. When people fight over research, it makes me feel so insignificant and worthless. How can people value cells, already predestined for the trash, more than me; a living, breathing, suffering, citizen? Why is there hardly any money or time to find a way to repair the spinal cord, but plenty of time and money, for war and exploration of other planets? Why is it ok for me to have to live this way? Why do so many people do foolish things, and/or even mean, horrible things, but get to spend full, healthy lives? It's getting to feel to be too much, too overwhelming, more hopeless, emptier, unbearable.
I've talked to my doctor about changing my anti-depressant medication, in hopes of helping me regain some ability to cope. I'm at the point where I feel as though nothing is taking off the edge, nothing is distracting enough. I feel awful, sad, lost, scared and lonely. I know I have people around me that worry,care about me and support me. Nothing is enough, and I feel helpless and horrible and don't want to feel this way. I'm skeptical of how much difference a pill will make, or even what talking about it can do. Nothing, short of fixing my spine can really serve as a solution, but I feel as though I've hit a wall. I feel worn out and at a loss for how to keep going forward, by just continuing what I've been doing up until now. I feel as though, I'm quickly unraveling, and it terrifies me. Asking for help scares me, but saying nothing scares me more. It's especially hard finding (or believing) anyone that really understands what I've beenthrough and what I'm going through. Many of my disabled friends/acquaintances are men, and I feel lack the ability to truly understand my perspective. I'm always concerned my honesty will upset the people that love me, and therefore hold a lot back. I'm at a point, where I feel I must speak up, to keep what sanity I have left. I don't even know how anyone can really help me. I know part of me, should just force myself to go forward, and do things, despite my lack of drive, or desire, but then I start to wonder who I'm really forcing myself for. Do I really want it for myself, deep down, or do I just not want to further disappoint myself & loved ones; but at what cost? My mind is currently just a chaotic mess of mixed emotions, sadness, frustration and fear and I'm desperate for some real solutions, if there are any.
Yesterday, I spent all day at the hospital for a UTI. I just took an antibiotic called Leviquin, about three weeks ago, that obviously didn't work. They took blood & urine, gave me a ridiculously strong IV antibiotic& a prescription. I was in the ER for about seven hours (two of which, were just spent waiting for an ambulance ride back to my apartment). The whole time, I'm trying my best not to freak out, or have a panic attack, because my absolute worst fears & experiences all revolve around the hospital. I spent the first year & a half, after my accident living in Robert Wood Johnson ICU, Kessler rehab, ST. Barnabas ICU, Cheshire nursing home, Morristown Memorial hospital and then back to the nursing home. Despite having daily visitors, most of the time, the large majority (mostly at night) was spent painfully, and terrifyingly, alone. I can't even begin to describe the loneliness, fear and sadness that I experienced, most nights. At times, I was literally at the brink of death, most times, just overwhelmed with loss and fear. I doubt anyone, has pleasant hospital memories, however, being hospitalized and totally paralyzed, feels like hell on earth. You are 100% at the mercy of the hospital staff, especially when you can't even hit a call bell, reposition yourself, get a drink, change the tv channel, work the bed controls, pick up the phone, or any other small comfort, that the average person can do. Plus, thanks to HIPA, I end up having to re-explain that I'm paralyzed, almost every time someone besides my nurse, or doctor enters the room. Honestly, I rather have staff read my chart, than have to explain why I can't make a fist, or raise my arm, or any other stupid thing. Even when I have family, or friends with me, I feel scared and lonely. I just want to be home, and I'm dreading the time when they'll have to inevitably leave me behind. The few times people stayed overnight with me, I still knew they'd eventually have to leave. Plus, I felt horrible, because I knew how uncomfortable & exhausted they must have been, trying to comfort me. As crazy as it might seem, I couldn't even watch a tv show or movie about the hospital, without feeling panicked. Although, thankfully, I haven't had to stay over night in the hospital, since I've been home, the fear is always there. Horribly, in the end, with or without visitors, I often still feel alone.
Short of having a person climb into bed with me, it's hard for me not feel alone. I can't feel people holding my hand. I can't feel much of anything. Other people with paralysis and therapists have said stuff like,"You can still feel your head, neck and shoulders.You can learn to substitue affection to the areas you can feel" and/or "intimacy is mostly in the mind." For me, paralysis has been extremely isolating and I feel extremely deprived. Not only do I feel emotionally cut off (because most people have no clue what it's like), but physically, alone. I so often, feel like I just want to be held and be able to embrace the person back. Not that a hug would really solve anything, I feel such a void in my life. A big part of that emptiness, is not having a signifigant other. Family and friends can only do so much, and although I love them and am tremendously thankful for the people in my life, there is ahuge, gaping emptiness inside of me. I miss having that other half, to hold me and make me feel safe. It's a different type of love and affection, and it's been lacking in my life for a very long time now. Sometimes, I feel as though, I'd be stronger and feel as though I would have more purpose, if I had a husband in my life. At the end of the day, my friends& family, all have their own lives, and I feel completely lost and empty. Part of my problem, is that I honestly still love my ex (the person I was with, when I was hurt) and our break-up isn't something I've been able to get past. Mostly because, we both feel like we'd be together, if I were never hurt. All my dreams were ripped out from underneath me overnight, and being with him was one of those dreams. The events that followed my accident, made it impossible for our relationship to work, and although I have no way of knowing how my life (or our relationship) would've turned out, up until this point, the abruptness of how it all ended, makes it unbearably difficult to move forward.
As unbearable as it's been without him, I'm full of doubts within myself as well. I don't know that I'd have been able to be there for him, if our situations were reversed, and that's an ugly reality, I didn't want to admit to myself. You think that love should be enough, but the reality is, that each case is unique and you really can't judge anyone, unless you've been in their shoes. Part of me feels like, if he truly loved me, we'd somehow be together. Another part of me says, I'm not sure how I'd handle it myself (in his shoes or even now, in my position). I don't really know how I'd deal with having a romantic relationship, on top of all of this. There's so much of my life, I'd want to shield, or hide, that I couldn't. I only know what I had, and recognize, it wouldn't be the same. Regardless of who I'd be with, the thought of letting anyone into my life in that way, both terrifies me and leaves me feeling very skeptical. Why would anyone want to willingly choose, to take on all the hardships that come along with my life? I'm trying so hard to run away from them myself, so why would anyone welcome them? Plus, there's my overwhelming sense of guilt, that I could never contribute even a fraction of what that person could. Also, there's my want to be with someone that's able bodied, because otherwise, I feel as though, it's just another friendship. How can I expect someone else to want something I don't even want for myself? Part of me feels like a bad person, for not being able to see past all the physical, but it's so much of the physical, nurturing aspect of a relationship, that I feel so lacking and that I miss.
My failed relationship with my ex, is just one of many hugely important goals/dreams that I've struggled with since my accident. There's the career I worked so hard for, achieved, then lost. Then, there's the dreams of marriage and children, I've had since I was a little girl; on top of ordinary goals, like owning a home, playing an active role in helping family & friends and common milestones. For the past five and a half years, I've been watching all of my friends accomplish the things I thought I'd have (and still desperately want). Every day, I see painful reminders of what I could've had, but ruined. It's not to say, I absolutely couldn't teach, get married, or even have children, in my condition. What most people fail to see, or understand, is that the aspects of' those dreams that I most looked forward to experiencing, would be gone. I can no longer do most of my favorite parts of my job, which include, the physical interaction with the materials, the hands on working & demonstration with the kids and the physical tasks of organizing, showing, managing and doing. Yes, the ideas are still there, but so much of what I loved, was making those ideas into reality. It's the kinesthetic, tactile sensations that I love most about art, and most of that is gone. Marriage and children, come with a ton of experiences that I'd completely miss out on. It kills me, to think I'll most likely never experience most of the things I've dreamed of my entire life. The compromises just seem so pale in comparison. I've looked forward to all the traditions of marriage, not just the piece of paper. I want to go try on wedding dresses in front of a million full length mirrors, WALK down the isle arm & arm with my dad, dance my wedding song with my husband, be carried through the threshold the night of my wedding, and make tons of love on my honeymoon. I've been dreaming, and wondering ever since I was a little girl, what it'd be like to be pregnant, feel my baby growing inside of me, having my husband rub my belly, decorate the nursery, go into labor, hold my baby in my arms, and breast feed. If I had a child, I looked forward to bathing it, feeding it, dressing it, rocking it to sleep and keeping it safe. I don't know that I could handle all the compromises and being a spectator. It breaks my heart, just thinking about it.
I've been struggling with all of these issues, since day one (June, 5, 2005). Instead of getting easier to cope, it's gotten harder and harder. Every year that passes, seems like a year lost, a dream gone forever. Every day that passes without a breakthrough, or a cure, it seems less hopeful. Every politician's decision or governmental set back to funding, seems like a punch to my face, like a personal attack. When people fight over research, it makes me feel so insignificant and worthless. How can people value cells, already predestined for the trash, more than me; a living, breathing, suffering, citizen? Why is there hardly any money or time to find a way to repair the spinal cord, but plenty of time and money, for war and exploration of other planets? Why is it ok for me to have to live this way? Why do so many people do foolish things, and/or even mean, horrible things, but get to spend full, healthy lives? It's getting to feel to be too much, too overwhelming, more hopeless, emptier, unbearable.
I've talked to my doctor about changing my anti-depressant medication, in hopes of helping me regain some ability to cope. I'm at the point where I feel as though nothing is taking off the edge, nothing is distracting enough. I feel awful, sad, lost, scared and lonely. I know I have people around me that worry,care about me and support me. Nothing is enough, and I feel helpless and horrible and don't want to feel this way. I'm skeptical of how much difference a pill will make, or even what talking about it can do. Nothing, short of fixing my spine can really serve as a solution, but I feel as though I've hit a wall. I feel worn out and at a loss for how to keep going forward, by just continuing what I've been doing up until now. I feel as though, I'm quickly unraveling, and it terrifies me. Asking for help scares me, but saying nothing scares me more. It's especially hard finding (or believing) anyone that really understands what I've beenthrough and what I'm going through. Many of my disabled friends/acquaintances are men, and I feel lack the ability to truly understand my perspective. I'm always concerned my honesty will upset the people that love me, and therefore hold a lot back. I'm at a point, where I feel I must speak up, to keep what sanity I have left. I don't even know how anyone can really help me. I know part of me, should just force myself to go forward, and do things, despite my lack of drive, or desire, but then I start to wonder who I'm really forcing myself for. Do I really want it for myself, deep down, or do I just not want to further disappoint myself & loved ones; but at what cost? My mind is currently just a chaotic mess of mixed emotions, sadness, frustration and fear and I'm desperate for some real solutions, if there are any.
Wednesday, August 18, 2010
Why all the hate?
I'm getting tired of seeing people post stuff about the proposed mosque that is planned to be built near ground zero. I've seen almost nothing but negative criticism and felt I wanted to add my two cents.
Not all Muslims are terrorists. Yes, it is a fact that radical Muslims were responsible for 9/11. However, radical Muslims do not represent all Muslims. Muslims, Jews and Christians all share the teachings of the Old Testament and preach the same core beliefs. There are bad people in every group. Human beings are flawed, and prone to violence regardless of religious ideology. Religion is a powerful motivator and has been the scape goat of horrible atrocities throughout history. The Romans persecuted the Christians, Egyptians persecuted the Israelites, Christians persecuted the Jews, Christians fight Christians (Catholics & Protestants), it goes on and on. I find it shocking how many people have become biased towards Muslims since 9/11. I judged people on an individual basis before 9/11, and continue to do the same.
My Christian friends (I was raised Catholic. I'm not atheist, just currently undecided) have been the most opposed and vocal to building the mosque. Yet, no one seems to remember (or wants to point out) how many people have been killed in the name of Christianity. Do the Crusades, the explorers or the Conquistadors ring a bell? Not to mention, most of the Nazis were Christian. They killed a lot more than 3,000 people, so does that mean we should stop building churches, so as not to offend anyone? Is it disrespectful to Native Americans or Holocaust survivors to build churches in their neighborhoods? Lots of contemporary murders are Christian, but you don't hear people calling Christians terrorists or treating them suspiciously. I really don't understand the double standard. The whole triumphalist attitude of organized religions is what pisses me off and makes it hard for me to believe in any one faith. I don't think I'll ever buy into the belief that good people will suffer eternal damnation, just because they called God by the wrong name. Every religious person thinks their belief is the right one, but that's no reason to stop others from practicing their faith. Our country was founded on religious freedom. The mosque is set to be built on private property, so the government should not have the constitutional right to oppose it.
I think it's horrible that "Muslim" has come to mean "terrorist" to so many people. Calling all Muslims terrorists is unfair and no different than being anti-Semitic; bigotry is bigotry no matter how you slice it. It is unfair to lump good Muslim people in with extremists and radical ideology. Prejudice is ignorance, bottom line. The facts are: 1-all religions can be (and have been) perverted & miss used, 2-government & religion are separate, 3-NYC is one of the most diverse places in the world & all citizens should be free to worship without discrimination, 4-the people responsible for taking those planes down died that day, it's not right to punish an entire religious community for their crimes. The truth of the matter is, dozens of upstanding Muslim American citizens were also killed in the 9/11 attacks. Why has everyone forgotten them? The Muslim citizens in those buildings were innocent people, working and contributing to our society; they were not terrorists. The men that hijacked those planes were terrorists. Al-Qaeda are extremists and they have killed more Muslims, than any other religious group*.
I just wish people could be more objective in their opinions and examine their own beliefs before judging others. Give people a chance to be good, instead of assuming they're evil. Didn't someone say something like, "He who is without sin can cast the first stone"?
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Saturday, August 7, 2010
Sick of Being Sick
I've been fighting cold sweats, fever and overall discomfort for a couple of weeks now. I finally decided to bite the bullet and take an antibiotic. I try to avoid them, as they almost always reek havoc with my stomach. On top of that, I'm waking up every couple of hours from the time I try to fall asleep, to the time I have to wake up. I haven't even been able to take a nap lately. I'm no stranger to insomnia, it's just that I'm more accustom to having racing thoughts keep me awake, which I try my best to turn off. Recently though it's more discomfort waking me up than anything else. It's especially annoying not being able to toss, turn or reposition myself. As it is, I've had to adjust to sleeping on my back, something I never did before my accident. I can honestly say, I haven't slept longer than four hours straight since I was on my feet and eventually, it always catches up with me.
Living in hospitals, rehab and the nursing home was the worst, because it was frightening being paralyzed and on my own (no family or friends with me) at night. Not to mention, perpetually noisy. I had zero control over the schedule or the waves of medical staff that constantly came and went. Living in my own apartment has helped to decrease my nighttime stress and there's certainly less noise. All in all, I still wake up tired most mornings. Part of the problem is the fact that I can't move, like the average person. Although I don't always feel uncomfortable, my body reacts to being in one position for too long and causes my legs to spasm, or I get sweaty or I get a weird tingly sensation, which eventually wakes me up. Either that, or I get too cold, or too hot, or my hair bothers me. Naturally, I need help to get repositioned. Sometimes it takes a few minutes for someone to hear me (especially if they're sleeping) and I end up being wide awake by the time the person leaves my room. At the nursing home, it was procedure to get turned every two hours (I felt like a rotisserie chicken half the time). I'd be lucky if I could fall back asleep before the aides would come again and cycle continued on and on, every night. Despite all my efforts (medication, meditation, white noise, etc.) of battling my insomnia, it's an on going issue.
Being over tired often sets the tone for my day. There's many days that my lack of sleep seems to zap me of all motivation. The first few years post accident, I got up in my wheelchair every day (regardless of how I felt, partly because I had no choice in the facilities). Ever since I got a bedsore on my upper thigh in 2008, sitting up has become hit or miss. Sometimes I feel fine and other times I feel like I can't get back into bed or lay down fast enough. It makes me not want to get out of bed at all. For the past six months (give or take) I've been staying in bed 5-6 days per week. My nurses, aides & family sometimes get annoyed with me constantly being in bed, because they worry about my overall physical and mental well being. I understand that it's good for my body to sit in my chair, for blood flow, digestion and breathing. However, I'm already forced to sit up for two to three hours on the days my nurse comes, so on those days, I'm ready to lay down once they leave. I don't see the point in going through the hassle of getting fully dressed and transferred into my chair, only to want to reverse the process an hour later. It's just not worth it to me.
Ironically, I probably sit up the same amount of time in my bed as the days I get up into my chair. The difference is, I can lie down when ever I want, in bed. If I'm in my chair, I need to be transferred and partially undressed. My catheter bags also need to be switched and cleaned. Given the hassle and the fact that my aides come at set times, getting up just becomes less appealing, especially if I'm already tired, or feeling sick. On top of all that, the only thing I can't do in bed is paint. The list of activities I can do on my own is pretty slim, so most days it doesn't really matter if I'm sitting in a bed, or a chair. I can even do most things while laying down: watch tv, read, talk on the phone, use my iPad, control my PC by mouse & play Nintendo DS.
I could understand concern if I was completely lethargic and apathetic and spent my entire days sleeping or being zoned out. To me, that's giving up and it's not the case with me. Most people just fail to consider that there's still a big portion of my day that is out of my control and spent doing things I'd rather not be doing. I can't do things on a whim, or instantaneously, because I'm always relying on someone else to assist me. On top of that, there's activities of daily life (ADLs) that are simple to a healthy person, but have become stressful and traumatic for me. Gong to the bathroom is the number one stressor in my life. I don't even usually discuss it in any detail, out of embarrassment and shame. Unfortunately, I have no choice in the matter. I have to eat, therefore I have to go the bathroom. Something that should be a personal, private matter, now practically dictates my schedule and involves several people.
Most people probably don't even consider how paralysis (high level injuries and severe degenerative diseases) can effect every tiny detail of someone's life. I think it's too disturbing, or sad for some people to even want to know. Then there's the people who could care less, because it has no impact on their lives. The truth is, anyone could be in my shoes. It took less than a minute for my life to change, forever. It frustrates me that most people don't see how lucky they are, just to be able to care for themselves. Things that were once second nature to me, like brushing my teeth, taking a shower or going to the bathroom, have become things I dread.
I cringe every other night, because I know the nurse is coming the next morning. Having to have a permanent catheter is bad enough, but needing a bowel regimen makes me want to disappear into the floor and never eat again. It's not something that's easy to empathize with, because most people don't even know what a bowel regimen (or bowel program) is and because the normal person has sensation. It can't be that bad right? Yes. Yes, it can. For starters, just the fact that another human being has to assist me with something I had been doing solo since I was probably three years old, is stressful. It's not an aspect of life I've ever been comfortable with, and now my feelings of embarrassment and stress are off the charts. Secondly, I can't feel any part of the process. I feel no urge to go, no indication that I've gone and no relief or comfort in having gone. A nurse has to essentially, manually stimulate my body to go and then continue to check inside to see if it's worked. I'm usually physically uncomfortable the entire time, because it forces my blood pressure to rise and the commode is not very comfortable. The whole ordeal can take up to two hours, and I have to go through it every other day. It's also very emotionally draining for me. Just imagine having a stranger (at first. I have several nurses that I've gotten to know over time) sit with you in the bathroom while you go, and then clean your bottom for you. It's horrific, even though that scenario doesn't cover the full extent of the regimen.
Even with a bowel regimen, there's always the wonderful anxiety that comes with being incontinent, and never knowing when or if my body may decide to "go" for no reason at all. Having to wear Depends in your twenties and thirties, is not an easy pill to swallow. Having the fear of an accident is on my mind every day, and especially if I have plans to go out or have people over. The threat of it happening is very real and often completely unpredictable. I try to avoid know causes, like antibiotics, but there have been many, many days where I've needed to cancel plans last minute. Either for fear of incontinence, or feeling ill if things don't go smoothly. I try my best to ignore it all when it's going on, but I'm never that successful. After that, I have my shower. Yay. Yet another person to see me naked and have to wash (aka touch) every inch of me. Then it's all topped off with having someone else brush my teeth, hair and feed me breakfast (like an infant). It's exhausting. Unfortunately, it hasn't gotten any easier over time, for me to deal with most of the daily ADLs.
I almost never discuss my personal care with people other than nurses, aides and a handful of friends and family. I'm writing about it today, because I'm just so fed up. I feel like people should know EVERY aspect of living with paralysis. Sometimes I feel like going outside to find a random huge crowd of people and start shouting through a megaphone all of the stuff I deal with, everyday. It also makes it hard for me to be sympathetic to most people (healthy), because their "problems" all seem so trivial and stupid to me. I'd welcome most things people complaint about, in exchange for being able to care for myself. I get so angry and upset, because people expect me to live like this and either have no clue what my (or other people in my situation) life is really like, or if they do know (medical professionals), they still have no cure, or solution. "Just deal with it, and move on."
The worst is when people tell me, "well, at least you're still alive." Yeah. Great! It's not exactly easy to just forget twenty four years of a "normal" life and just be content with living, for the sake of being alive. The fact of the matter is, I'm left with few choices. If I want to "move on" with my life, it means having to deal with ALL the stressors, every second of the day. It means acknowledging the fact that I'll be chronically tired, often sick (UTIs are very common with catheters, despite how clean you are), have instances of incontinence, reliant on medication, need assistance from others, be susceptible to skin break down, be at risk of dying from respiratory infections, weakening bones, and inevitably have to do things that make me very uncomfortable (for my own health and cleanliness). It's my life. Take it or leave it. I don't get a breather. I can't remove myself from the situation. There will be many days that I'm sad, ill, or don't want to bothered with anyone, or anything that's not absolutely necessary. I can't understand why or how people still expect more.
Just because I'm feeling ill or tired, or just don't want to get out of bed, doesn't mean I'm giving up. Although I might not be as busy as I was the first two years I've lived in my apartment (2007-2009), I still try my best to be productive. I'm still painting, albeit much less frequently. However, I've continued to look for ways to share my artwork and have been exploring digital art. I work on my website from time to time and try to post at least two blogs per month. On top of that, I'm always networking and hunting for ways to help advocate for a cure. My intentions are always to raise awareness. I don't strive to be an inspiration or motivator for other disabled people. Other people with disabilities (paralysis specifically) already know what it's like to deal with my day to day struggles. Either that, or they were born disabled and have a totally different perspective.
I can't speak for anyone else, but I can educate people on the facts and use my life as an example. I don't expect other people to cope the way I do. Every person has their own story. Every person that's had a spinal cord injury goes through a unique experience. Your lifestyle, age and health all factor into how much loss you have to face. Each injury is unique. My goal is solely to educate the general public about paralysis and open people's eyes to what it takes to keep moving forward and all the obstacles that come along with paralysis. No one should have to live with paralysis and I feel it's important that people understand why we so desperately need a cure.
Personally, I'm at a point in my life (and my injury) where I have a tiny glimmer of hope left for a cure(that I'll be able to benefit from), but live each day at a time. In my mind, I'll be paralyzed until I die. If a cure is found, that'll be fantastic, but I have to face the reality of the present. I can't plan my life around "someday", "might", or "if." The truth of the matter is that, most days I don't feel motivated. Many days seem overwhelming. I'm sick of being sick. It's incredibly hard having a chronic condition. There are certain things that are inevitable and at times it's hard to face the day, because I know what's coming. It's never easy, but I try my best. I think that's good enough.
Sent from my iPad
Living in hospitals, rehab and the nursing home was the worst, because it was frightening being paralyzed and on my own (no family or friends with me) at night. Not to mention, perpetually noisy. I had zero control over the schedule or the waves of medical staff that constantly came and went. Living in my own apartment has helped to decrease my nighttime stress and there's certainly less noise. All in all, I still wake up tired most mornings. Part of the problem is the fact that I can't move, like the average person. Although I don't always feel uncomfortable, my body reacts to being in one position for too long and causes my legs to spasm, or I get sweaty or I get a weird tingly sensation, which eventually wakes me up. Either that, or I get too cold, or too hot, or my hair bothers me. Naturally, I need help to get repositioned. Sometimes it takes a few minutes for someone to hear me (especially if they're sleeping) and I end up being wide awake by the time the person leaves my room. At the nursing home, it was procedure to get turned every two hours (I felt like a rotisserie chicken half the time). I'd be lucky if I could fall back asleep before the aides would come again and cycle continued on and on, every night. Despite all my efforts (medication, meditation, white noise, etc.) of battling my insomnia, it's an on going issue.
Being over tired often sets the tone for my day. There's many days that my lack of sleep seems to zap me of all motivation. The first few years post accident, I got up in my wheelchair every day (regardless of how I felt, partly because I had no choice in the facilities). Ever since I got a bedsore on my upper thigh in 2008, sitting up has become hit or miss. Sometimes I feel fine and other times I feel like I can't get back into bed or lay down fast enough. It makes me not want to get out of bed at all. For the past six months (give or take) I've been staying in bed 5-6 days per week. My nurses, aides & family sometimes get annoyed with me constantly being in bed, because they worry about my overall physical and mental well being. I understand that it's good for my body to sit in my chair, for blood flow, digestion and breathing. However, I'm already forced to sit up for two to three hours on the days my nurse comes, so on those days, I'm ready to lay down once they leave. I don't see the point in going through the hassle of getting fully dressed and transferred into my chair, only to want to reverse the process an hour later. It's just not worth it to me.
Ironically, I probably sit up the same amount of time in my bed as the days I get up into my chair. The difference is, I can lie down when ever I want, in bed. If I'm in my chair, I need to be transferred and partially undressed. My catheter bags also need to be switched and cleaned. Given the hassle and the fact that my aides come at set times, getting up just becomes less appealing, especially if I'm already tired, or feeling sick. On top of all that, the only thing I can't do in bed is paint. The list of activities I can do on my own is pretty slim, so most days it doesn't really matter if I'm sitting in a bed, or a chair. I can even do most things while laying down: watch tv, read, talk on the phone, use my iPad, control my PC by mouse & play Nintendo DS.
I could understand concern if I was completely lethargic and apathetic and spent my entire days sleeping or being zoned out. To me, that's giving up and it's not the case with me. Most people just fail to consider that there's still a big portion of my day that is out of my control and spent doing things I'd rather not be doing. I can't do things on a whim, or instantaneously, because I'm always relying on someone else to assist me. On top of that, there's activities of daily life (ADLs) that are simple to a healthy person, but have become stressful and traumatic for me. Gong to the bathroom is the number one stressor in my life. I don't even usually discuss it in any detail, out of embarrassment and shame. Unfortunately, I have no choice in the matter. I have to eat, therefore I have to go the bathroom. Something that should be a personal, private matter, now practically dictates my schedule and involves several people.
Most people probably don't even consider how paralysis (high level injuries and severe degenerative diseases) can effect every tiny detail of someone's life. I think it's too disturbing, or sad for some people to even want to know. Then there's the people who could care less, because it has no impact on their lives. The truth is, anyone could be in my shoes. It took less than a minute for my life to change, forever. It frustrates me that most people don't see how lucky they are, just to be able to care for themselves. Things that were once second nature to me, like brushing my teeth, taking a shower or going to the bathroom, have become things I dread.
I cringe every other night, because I know the nurse is coming the next morning. Having to have a permanent catheter is bad enough, but needing a bowel regimen makes me want to disappear into the floor and never eat again. It's not something that's easy to empathize with, because most people don't even know what a bowel regimen (or bowel program) is and because the normal person has sensation. It can't be that bad right? Yes. Yes, it can. For starters, just the fact that another human being has to assist me with something I had been doing solo since I was probably three years old, is stressful. It's not an aspect of life I've ever been comfortable with, and now my feelings of embarrassment and stress are off the charts. Secondly, I can't feel any part of the process. I feel no urge to go, no indication that I've gone and no relief or comfort in having gone. A nurse has to essentially, manually stimulate my body to go and then continue to check inside to see if it's worked. I'm usually physically uncomfortable the entire time, because it forces my blood pressure to rise and the commode is not very comfortable. The whole ordeal can take up to two hours, and I have to go through it every other day. It's also very emotionally draining for me. Just imagine having a stranger (at first. I have several nurses that I've gotten to know over time) sit with you in the bathroom while you go, and then clean your bottom for you. It's horrific, even though that scenario doesn't cover the full extent of the regimen.
Even with a bowel regimen, there's always the wonderful anxiety that comes with being incontinent, and never knowing when or if my body may decide to "go" for no reason at all. Having to wear Depends in your twenties and thirties, is not an easy pill to swallow. Having the fear of an accident is on my mind every day, and especially if I have plans to go out or have people over. The threat of it happening is very real and often completely unpredictable. I try to avoid know causes, like antibiotics, but there have been many, many days where I've needed to cancel plans last minute. Either for fear of incontinence, or feeling ill if things don't go smoothly. I try my best to ignore it all when it's going on, but I'm never that successful. After that, I have my shower. Yay. Yet another person to see me naked and have to wash (aka touch) every inch of me. Then it's all topped off with having someone else brush my teeth, hair and feed me breakfast (like an infant). It's exhausting. Unfortunately, it hasn't gotten any easier over time, for me to deal with most of the daily ADLs.
I almost never discuss my personal care with people other than nurses, aides and a handful of friends and family. I'm writing about it today, because I'm just so fed up. I feel like people should know EVERY aspect of living with paralysis. Sometimes I feel like going outside to find a random huge crowd of people and start shouting through a megaphone all of the stuff I deal with, everyday. It also makes it hard for me to be sympathetic to most people (healthy), because their "problems" all seem so trivial and stupid to me. I'd welcome most things people complaint about, in exchange for being able to care for myself. I get so angry and upset, because people expect me to live like this and either have no clue what my (or other people in my situation) life is really like, or if they do know (medical professionals), they still have no cure, or solution. "Just deal with it, and move on."
The worst is when people tell me, "well, at least you're still alive." Yeah. Great! It's not exactly easy to just forget twenty four years of a "normal" life and just be content with living, for the sake of being alive. The fact of the matter is, I'm left with few choices. If I want to "move on" with my life, it means having to deal with ALL the stressors, every second of the day. It means acknowledging the fact that I'll be chronically tired, often sick (UTIs are very common with catheters, despite how clean you are), have instances of incontinence, reliant on medication, need assistance from others, be susceptible to skin break down, be at risk of dying from respiratory infections, weakening bones, and inevitably have to do things that make me very uncomfortable (for my own health and cleanliness). It's my life. Take it or leave it. I don't get a breather. I can't remove myself from the situation. There will be many days that I'm sad, ill, or don't want to bothered with anyone, or anything that's not absolutely necessary. I can't understand why or how people still expect more.
Just because I'm feeling ill or tired, or just don't want to get out of bed, doesn't mean I'm giving up. Although I might not be as busy as I was the first two years I've lived in my apartment (2007-2009), I still try my best to be productive. I'm still painting, albeit much less frequently. However, I've continued to look for ways to share my artwork and have been exploring digital art. I work on my website from time to time and try to post at least two blogs per month. On top of that, I'm always networking and hunting for ways to help advocate for a cure. My intentions are always to raise awareness. I don't strive to be an inspiration or motivator for other disabled people. Other people with disabilities (paralysis specifically) already know what it's like to deal with my day to day struggles. Either that, or they were born disabled and have a totally different perspective.
I can't speak for anyone else, but I can educate people on the facts and use my life as an example. I don't expect other people to cope the way I do. Every person has their own story. Every person that's had a spinal cord injury goes through a unique experience. Your lifestyle, age and health all factor into how much loss you have to face. Each injury is unique. My goal is solely to educate the general public about paralysis and open people's eyes to what it takes to keep moving forward and all the obstacles that come along with paralysis. No one should have to live with paralysis and I feel it's important that people understand why we so desperately need a cure.
Personally, I'm at a point in my life (and my injury) where I have a tiny glimmer of hope left for a cure(that I'll be able to benefit from), but live each day at a time. In my mind, I'll be paralyzed until I die. If a cure is found, that'll be fantastic, but I have to face the reality of the present. I can't plan my life around "someday", "might", or "if." The truth of the matter is that, most days I don't feel motivated. Many days seem overwhelming. I'm sick of being sick. It's incredibly hard having a chronic condition. There are certain things that are inevitable and at times it's hard to face the day, because I know what's coming. It's never easy, but I try my best. I think that's good enough.
Sent from my iPad
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