As you may or may not know, the 5th anniversary if my accident was this past June. I was injured in a swimming accident, which left me paralyzed from my chest down. A split second decision to do a shallow dive changed my life forever. It was a stupid mistake (that thousands of people make every summer) that I'm still paying for, five years later.
I no longer have the ability to care for myself. Paralysis has robbed me of my independence, privacy, career, relationships, dreams and so much more. My accident literally flipped my life upside down overnight. Right now there is no cure to paralysis, so I have to face the reality that I might spend the rest of my life in a wheelchair. I might never walk again, feel most of my body or be able to live without relying on others for my daily needs. It's a hard pill to swallow. Although I have hope for a cure, I have to live for today & deal with what I have now. It's important to me that other people understand how awful paralysis is, and why we should fight for a cure. I use my life as an example of how quickly life can change and hope people can learn from my experience.
According to the Christopher & Dana Reeve Foundation, 6,500 teens end up going to the ER every summer, due to diving accidents. That does not include other summer related injuries, like biking, riding motor cycles, surfing or sports; which are all common causes for spinal cord injuries. Given that the annual rate of spinal cord injury (USA) is about 12,000, that means over half of all spinal cord injuries occur during the summer months. The CDRF estimates that there are approximately 200,000 people currently living (in the United States) with paralysis, due to recreational related spinal cord injuries. I'm one of those people.
Please take the time to learn more about paralysis & support research for a cure. There are many causes of paralysis. Unfortunately, many cases are due disease or preexisting medical condition and can not be avoided or prevented. Most spinal cord injuries can be avoided or prevented. Educate yourself and others of the common causes of spinal cord injuries and be mindful of safety measures that you can take to help prevent yourself and/or others from injury. There are some simple tips that you should know and discuss with any children/young adults in your life. The CDRF Paralysis Resource Center has put together a list for summer safety. Please check it out & share the info with friends & family (http://www.christopherreeve.org/site/c.mtKZKgMWKwG/b.5283099/k.6B65/Summer_Safety_Checklist.htm?msource=email&auid=6574797). It'll only take five minutes and could potentially save you or a loved one from getting injured. It's something I wish I had been more aware of at the time of my accident. It's so common to feel invincible when you're young and think it's important for everyone to be reminded of how easily a careless mistake can result in a serious injury. If I had read this checklist five years ago, it could have made me more cautious and i could have potentially made better decisions. Who knows? The point is, it never hurts to play things safe.
Thanks for reading & enjoy the rest of your summer!
- Posted using BlogPress from my iPad
Showing posts with label CDRF. Show all posts
Showing posts with label CDRF. Show all posts
Sunday, July 18, 2010
Wednesday, June 9, 2010
Acceptance
I often read posts from the Care Cure & Christopher and Dana Reeve Foundation forums. Both websites are dedicated to spinal cord injury and paralysis awareness and research towards finding a cure. Both websites also have active online communities of people living with paralysis, caregivers and medical & mental health professionals. It's helpful to be able to read how other people deal with paralysis and know that there are other people that can understand your situation. I contribute my opinion, information and advice from time to time. I'd encourage anyone effected by paralysis to check out both websites.
The other day a person with a C6-C7 injury posted a question that caught my attention. This person was injured nine months ago, and wanted to know how other people cope with their injuries. Specifically, he asked, "those of you that are years out, when did you (if you did) come to terms with your new self? How long did it take for the emotional pain to subside?"
I didn't really ask myself this question until much later in my "recovery." I think I was in complete denial that I wouldn't "get better" for at least a year after my accident. Even now, a part of me wants to reject my "new self." Acknowledging this is it, means admitting that I won't ever get better. That is a hard pill to swallow. My way of "coming to terms" with reality is to essentially grieve for myself. I grieve over the loss of the "old Christina" and try to make the best out of the "Christina" that was left behind. That might sound bizarre to some people, but when every aspect of your life is turned completely upside down, you can't help but feel a sharp divide. One day you're independent, the next day you're dependent. The easiest way for me to deal with my life now, is to not constantly harbor on the past. That life is gone.
I decided to respond to the question about acceptance, because it is something I'm still struggling over today. I'm not so sure I want to accept this life. Here is what I wrote:
I think "acceptance" might not mean the same thing to everyone. When I think of that word, I always think of validation and surrender. On one hand, I acknowledge the fact that my life has changed (C5 complete, 6/5/05) and I recognize that the chances of me ever being "cured" are slim, to none. On the other hand, I will never be satisfied with this life and will fight to change as much as I can. A lot of people use the word acceptance to express being at peace with their situation or the fact that they have given up hope for anything better.
I'm a realist, so I know I'll probably spend the rest of my life in a chair. However, I feel like the moment I accept that this is it, that I'd be giving up hope. Without hope, I'd have no reason to try to keep moving forward. We've been dealt a really crap luck hand of cards and no matter how you look at it, it's always going to be crap, unless something changes. We can choose to do what we can to improve the situation we've been handed and make the best of it, or we can just accept it for what it is and leave it at that. If you accept someone, or something, you are essentially saying, "you/it are/is fine the way it are/is." Some people have learned how to accept their injuries and still move forward (reality is, life moves forward with, or without you) and are content. I will never be content living with paralysis.
It's horrible, what we go through and how we have to live. I wouldn't wish paralysis on anyone. Every adult human being should have the basic freedom of being able to care for themselves and privacy, for modesty. Paralysis steals both of those basic human rights, in addition to the pain & suffering due to all the other aspects of life that change or are lost altogether (physical talents, careers, material possessions, dreams, intimacy, life without medication, relationships, etc.).
No one should have to endure all of the loss and suffering that paralysis can cause. I can understand and accept losing abilities or senses gradually, with age. There are a lot of elderly people that require assistance, but the difference is that they were fortunate enough to live full, "normal" lives. If I were eighty or ninety years old, I'd be able to accept needing help. It's natural to lose or experience a decline in abilities, strengths and senses as part of aging, and getting older. Paralysis is so awful because it steals all that and more, in the matter of seconds. People that suffer a spinal cord injury aren't given a lifetime to deal with gradual change. Paralysis forces you to cope with a lifetime's worth of loss (not even, because there are tons of relatively healthy people in the eighties and up) overnight and robs you of the future you planned.
Another one of the worst aspects of spinal cord injuries is that they are completely random. There are no genetic markers, family history or warning symptoms to an injury. Anyone can get injured at any time and the results/recovery are often just as unpredictable a the injury itself. There is no full proof way to avoid injury and everybody's spinal cord injury is entirely unique to their physiology and the exact way they are injured. In fact, I'm always reminded of this man Gene, that was in rehab with me, at Kessler. Gene had been a fire fighter in NYC. One night, he and five other fire fighters were forced to jump out of a five story building (or be burnt to death). Two of those men died at the scene, while four survived. Obviously, Gene was among the four survivors. He was the last of his group to leave rehab after having survived the fifty foot plus fall, a coma and about eight months of therapy. On his last day of therapy, Gene walked out of Kessler with a cane.I can remember watching him leave, in disbelief. I recall feeling happy for him and jealous of him at the same time. It made no sense to me, how a man could walk after falling five stories and yet, doctors were telling me it was impossible for me to do the same. Contrarily to Gene, I broke my neck in a failed attempt to shallow dive in a swimming pool. I dove from about five and a half feet off the ground. I only spent three months at Kessler and left in a head controlled wheelchair. There is no rhyme or reason when it comes to spinal cord injuries. That is why I feel it is so important to teach people about paralysis. People need to understand how difficult it is to live with paralysis and recognize the fact that they can be injured just as easily, and unpredictably as we were.
It's insanely frustrating that doctors (the scientific community as a whole) still have little to offer in terms of a cure or recovery. It makes me angry and sad to know that right now, someone could be getting injured and doctors won't be able to help that person, any more than they helped me five years ago. It's sometimes baffling to me how far humanity has come and yet, we still have failed to figure out all there is to know about our own bodies. You can't help but want to lash out, at times, over how absurd it all seems and how messed up our priorities seem to be. Scientists say a cure is possible. Since I've been injured, I've heard and read the magic time span of five to ten years, over and over again. Unfortunately, people with injuries decades older than mine have been hearing, hoping and waiting for the same results, for much longer. It makes me sick when I hear researchers say it's just a matter of funding and policies (keep in mind, every country has it's own set of priorities and regulations).The thought that I could be cured (or that I might have never had to endure all that I have the past five years) if it weren't for lack of money and support, makes me want to scream.
At times, I get so fed up and just wish there was someone to give me answers. It all seems so unfair and hard to understand why more isn't being done. Research towards understanding and repairing the central nervous system is promising and on-going, but moving at a snail's pace. Our spinal cord and brains are the most important parts of our body (also extremely complex) and unlocking the keys to repairing damage, would have huge practical applications and alleviate tremendous suffering (even save on spending, in the long run). So why is it that we spend more money on detrimental things, like war and oil? How can our government thinks it's ok to invest billions of dollars to search for microbes in space, while he have millions of people suffering here on Earth? Many of the world's brightest minds are focused on questions of curiosity, versus questions of necessity. While fascinating, I fail to see what practical information that (most of) our space program can hope to provide. It seems like common sense, that humanity would want to understand all there is to know about ourselves, before wasting brainpower and time on other topics.
Sometimes I wonder if our society is the way it is, due to ignorance. Logic tells me that our priorities as a country, stem mostly from greed and selfishness. I think the rest of society just doesn't think about something, unless it effects them personally, or it's constantly in their face. So often I feel like people need to be hit over the head, before they'll pay attention. The majority of people are so self absorbed that it's hard for them to see the bigger picture. I always joke that its as if I see the world through a pair of one hundred year old eyes. Before my accident, I was guilty of being caught up in material things and had a totally different perspective on life. I stressed over stupid, insignificant things and didn't realize how blessed I was. I'd like to think of myself as a kind, helpful person, but before my accident, there was a lot of wonderful things I took for granted. In general, people need to be reminded and need some kind of emotional connection to really care about and support a cause. The out pour of aide and money that went to Haiti the first few weeks after their horrific earthquake is one example, of the potential support people are willing to give, if it touches their heart.
Right now, the support for paralysis research is not enough, especially when you look at diseases like AIDS and Cancer, and compare the amount of support that is generated for those illnesses. I think it's our job (for our own sake as well as others) to be out there, reminding people and/or teaching people about paralysis. It shouldn't have to take a celebrity to raise awareness. Part of the problem is that not enough people are exposed to disabilities, know someone with a severe disability or realize how quickly their life can change. I believe if more people really understood what paralysis is like, that there would be more support towards finding a cure. Naturally, a cure to paralysis would mean wiping out a ton of diseases and disabilities(ALS, MS, MD, Parkinson's, CP, etc.), and would effect millions more than just people with spinal cord injuries.
I can't imagine that my sadness, anger or frustration will ever really go away. I've just learned to channel my feelings into something productive (when I can) and try to find purpose in it all. I also think it's perfectly normal to have up and down days. I'm sure if you think back to your old life, you had your share of bad days too. I often feel like I've been given an impossible task. Although people try their best to be supportive, unless they've lived with paralysis, it's near impossible for them to truly understand. Other people will offer you a ton of advice and try to cheer you up. People mean well, but only you know yourself best. You have to find your own reasons for wanting to keep moving forward. I've gotten better at dealing with certain things over time, but find it hard to believe I'll ever be satisfied or happy in my situation. Don't get me wrong, I still have things to be grateful for and things that make me happy, but it's always bittersweet.
I just take it one day at a time & try to give myself purpose. My family and friends are one reason I try to keep going forward. My hope for a cure is my second reason and my desire to salvage something positive from my accident is my third reason. For right now, those three reasons are enough. If my SCI has taught me anything, it's how fragile life is and how little control we ultimately have over our lives. I still struggle with the past, although I know I can't change it; I miss it. I try not to think ahead too far into the future, because I know how quickly things can change. I set loose goals for myself and take things as they come, day by day. Tomorrow my reasons to keep going might not be enough, or I might find even more. Who knows? Just do your best; that's all you can expect from yourself.
Right now, your quality of life rests heavily on your own choices. You have more power to improve your state of mind and/or your situation than anyone else. I have a website, dedicated to SCI & paralysis awareness. It's not a big deal, or anything, it's just one of my attempts at reaching out to others. It makes me feel good, to do things to raise awareness, even if it's small. It's important to me to feel like I'm doing something productive and that I'm contributing towards a cure. If you're interested, check it out. I hope my advice helps a little.
Sent from my iPad
- Posted using BlogPress from my iPhone
The other day a person with a C6-C7 injury posted a question that caught my attention. This person was injured nine months ago, and wanted to know how other people cope with their injuries. Specifically, he asked, "those of you that are years out, when did you (if you did) come to terms with your new self? How long did it take for the emotional pain to subside?"
I didn't really ask myself this question until much later in my "recovery." I think I was in complete denial that I wouldn't "get better" for at least a year after my accident. Even now, a part of me wants to reject my "new self." Acknowledging this is it, means admitting that I won't ever get better. That is a hard pill to swallow. My way of "coming to terms" with reality is to essentially grieve for myself. I grieve over the loss of the "old Christina" and try to make the best out of the "Christina" that was left behind. That might sound bizarre to some people, but when every aspect of your life is turned completely upside down, you can't help but feel a sharp divide. One day you're independent, the next day you're dependent. The easiest way for me to deal with my life now, is to not constantly harbor on the past. That life is gone.
I decided to respond to the question about acceptance, because it is something I'm still struggling over today. I'm not so sure I want to accept this life. Here is what I wrote:
I think "acceptance" might not mean the same thing to everyone. When I think of that word, I always think of validation and surrender. On one hand, I acknowledge the fact that my life has changed (C5 complete, 6/5/05) and I recognize that the chances of me ever being "cured" are slim, to none. On the other hand, I will never be satisfied with this life and will fight to change as much as I can. A lot of people use the word acceptance to express being at peace with their situation or the fact that they have given up hope for anything better.
I'm a realist, so I know I'll probably spend the rest of my life in a chair. However, I feel like the moment I accept that this is it, that I'd be giving up hope. Without hope, I'd have no reason to try to keep moving forward. We've been dealt a really crap luck hand of cards and no matter how you look at it, it's always going to be crap, unless something changes. We can choose to do what we can to improve the situation we've been handed and make the best of it, or we can just accept it for what it is and leave it at that. If you accept someone, or something, you are essentially saying, "you/it are/is fine the way it are/is." Some people have learned how to accept their injuries and still move forward (reality is, life moves forward with, or without you) and are content. I will never be content living with paralysis.
It's horrible, what we go through and how we have to live. I wouldn't wish paralysis on anyone. Every adult human being should have the basic freedom of being able to care for themselves and privacy, for modesty. Paralysis steals both of those basic human rights, in addition to the pain & suffering due to all the other aspects of life that change or are lost altogether (physical talents, careers, material possessions, dreams, intimacy, life without medication, relationships, etc.).
No one should have to endure all of the loss and suffering that paralysis can cause. I can understand and accept losing abilities or senses gradually, with age. There are a lot of elderly people that require assistance, but the difference is that they were fortunate enough to live full, "normal" lives. If I were eighty or ninety years old, I'd be able to accept needing help. It's natural to lose or experience a decline in abilities, strengths and senses as part of aging, and getting older. Paralysis is so awful because it steals all that and more, in the matter of seconds. People that suffer a spinal cord injury aren't given a lifetime to deal with gradual change. Paralysis forces you to cope with a lifetime's worth of loss (not even, because there are tons of relatively healthy people in the eighties and up) overnight and robs you of the future you planned.
Another one of the worst aspects of spinal cord injuries is that they are completely random. There are no genetic markers, family history or warning symptoms to an injury. Anyone can get injured at any time and the results/recovery are often just as unpredictable a the injury itself. There is no full proof way to avoid injury and everybody's spinal cord injury is entirely unique to their physiology and the exact way they are injured. In fact, I'm always reminded of this man Gene, that was in rehab with me, at Kessler. Gene had been a fire fighter in NYC. One night, he and five other fire fighters were forced to jump out of a five story building (or be burnt to death). Two of those men died at the scene, while four survived. Obviously, Gene was among the four survivors. He was the last of his group to leave rehab after having survived the fifty foot plus fall, a coma and about eight months of therapy. On his last day of therapy, Gene walked out of Kessler with a cane.I can remember watching him leave, in disbelief. I recall feeling happy for him and jealous of him at the same time. It made no sense to me, how a man could walk after falling five stories and yet, doctors were telling me it was impossible for me to do the same. Contrarily to Gene, I broke my neck in a failed attempt to shallow dive in a swimming pool. I dove from about five and a half feet off the ground. I only spent three months at Kessler and left in a head controlled wheelchair. There is no rhyme or reason when it comes to spinal cord injuries. That is why I feel it is so important to teach people about paralysis. People need to understand how difficult it is to live with paralysis and recognize the fact that they can be injured just as easily, and unpredictably as we were.
It's insanely frustrating that doctors (the scientific community as a whole) still have little to offer in terms of a cure or recovery. It makes me angry and sad to know that right now, someone could be getting injured and doctors won't be able to help that person, any more than they helped me five years ago. It's sometimes baffling to me how far humanity has come and yet, we still have failed to figure out all there is to know about our own bodies. You can't help but want to lash out, at times, over how absurd it all seems and how messed up our priorities seem to be. Scientists say a cure is possible. Since I've been injured, I've heard and read the magic time span of five to ten years, over and over again. Unfortunately, people with injuries decades older than mine have been hearing, hoping and waiting for the same results, for much longer. It makes me sick when I hear researchers say it's just a matter of funding and policies (keep in mind, every country has it's own set of priorities and regulations).The thought that I could be cured (or that I might have never had to endure all that I have the past five years) if it weren't for lack of money and support, makes me want to scream.
At times, I get so fed up and just wish there was someone to give me answers. It all seems so unfair and hard to understand why more isn't being done. Research towards understanding and repairing the central nervous system is promising and on-going, but moving at a snail's pace. Our spinal cord and brains are the most important parts of our body (also extremely complex) and unlocking the keys to repairing damage, would have huge practical applications and alleviate tremendous suffering (even save on spending, in the long run). So why is it that we spend more money on detrimental things, like war and oil? How can our government thinks it's ok to invest billions of dollars to search for microbes in space, while he have millions of people suffering here on Earth? Many of the world's brightest minds are focused on questions of curiosity, versus questions of necessity. While fascinating, I fail to see what practical information that (most of) our space program can hope to provide. It seems like common sense, that humanity would want to understand all there is to know about ourselves, before wasting brainpower and time on other topics.
Sometimes I wonder if our society is the way it is, due to ignorance. Logic tells me that our priorities as a country, stem mostly from greed and selfishness. I think the rest of society just doesn't think about something, unless it effects them personally, or it's constantly in their face. So often I feel like people need to be hit over the head, before they'll pay attention. The majority of people are so self absorbed that it's hard for them to see the bigger picture. I always joke that its as if I see the world through a pair of one hundred year old eyes. Before my accident, I was guilty of being caught up in material things and had a totally different perspective on life. I stressed over stupid, insignificant things and didn't realize how blessed I was. I'd like to think of myself as a kind, helpful person, but before my accident, there was a lot of wonderful things I took for granted. In general, people need to be reminded and need some kind of emotional connection to really care about and support a cause. The out pour of aide and money that went to Haiti the first few weeks after their horrific earthquake is one example, of the potential support people are willing to give, if it touches their heart.
Right now, the support for paralysis research is not enough, especially when you look at diseases like AIDS and Cancer, and compare the amount of support that is generated for those illnesses. I think it's our job (for our own sake as well as others) to be out there, reminding people and/or teaching people about paralysis. It shouldn't have to take a celebrity to raise awareness. Part of the problem is that not enough people are exposed to disabilities, know someone with a severe disability or realize how quickly their life can change. I believe if more people really understood what paralysis is like, that there would be more support towards finding a cure. Naturally, a cure to paralysis would mean wiping out a ton of diseases and disabilities(ALS, MS, MD, Parkinson's, CP, etc.), and would effect millions more than just people with spinal cord injuries.
I can't imagine that my sadness, anger or frustration will ever really go away. I've just learned to channel my feelings into something productive (when I can) and try to find purpose in it all. I also think it's perfectly normal to have up and down days. I'm sure if you think back to your old life, you had your share of bad days too. I often feel like I've been given an impossible task. Although people try their best to be supportive, unless they've lived with paralysis, it's near impossible for them to truly understand. Other people will offer you a ton of advice and try to cheer you up. People mean well, but only you know yourself best. You have to find your own reasons for wanting to keep moving forward. I've gotten better at dealing with certain things over time, but find it hard to believe I'll ever be satisfied or happy in my situation. Don't get me wrong, I still have things to be grateful for and things that make me happy, but it's always bittersweet.
I just take it one day at a time & try to give myself purpose. My family and friends are one reason I try to keep going forward. My hope for a cure is my second reason and my desire to salvage something positive from my accident is my third reason. For right now, those three reasons are enough. If my SCI has taught me anything, it's how fragile life is and how little control we ultimately have over our lives. I still struggle with the past, although I know I can't change it; I miss it. I try not to think ahead too far into the future, because I know how quickly things can change. I set loose goals for myself and take things as they come, day by day. Tomorrow my reasons to keep going might not be enough, or I might find even more. Who knows? Just do your best; that's all you can expect from yourself.
Right now, your quality of life rests heavily on your own choices. You have more power to improve your state of mind and/or your situation than anyone else. I have a website, dedicated to SCI & paralysis awareness. It's not a big deal, or anything, it's just one of my attempts at reaching out to others. It makes me feel good, to do things to raise awareness, even if it's small. It's important to me to feel like I'm doing something productive and that I'm contributing towards a cure. If you're interested, check it out. I hope my advice helps a little.
Sent from my iPad
- Posted using BlogPress from my iPhone
Tuesday, January 19, 2010
Report about spinal cord injuries in Haiti
I just read this report by ABC http://abcnews.go.com/Health/Wellness/haiti-spine-specific-medical-aid-doctors/story?id=9554088&page=1 (the Christopher & Dana Reeve foundation just posted it on their Facebook).The report addresses the issue of spinal cord injuries due to the earthquake in Haiti. I'm sure the number of spinal cord injuries is staggering, considering the magnitude of devastation. I'm really pleased to see that there are initiatives under way to try and provide care to all of the survivors. I only wish (as does everyone, I'm sure) there were a way to get the medical care to survivors faster.I've been thinking about this specific problem ever since the earthquake occurred and wish I could do more.
Given my own injury (C4 complete) I understand all to well how much care these people need and how critical those first few days/hours are, after sustaining a spinal cord injury. I can only begin to imagine the pain and suffering the Haitian people are going through. It is understandable that the people with spinal cord injuries are being injured further in the desperation to save their lives. I'm sure the average person helping to rescue or free people from the rubble has no way of knowing how severely someone might be wounded. Even if it's clear that someone has been paralyzed, there is such limited access to equipment that I'm sure the priority is just getting the person in to see a doctor with what ever means they have to bring them there. Quick access to medical care is crucial with any severe injury and it's almost unbelievable that people are surviving days trapped beneath the wreckage. It is a race against the clock for the rescuers and survivors. The survivors need medical care as quickly as possible and the rescuers have to move as fast as they can for their own safety as well. It must be terrifying having to worry about tremors which could possibly kill the people still waiting to be saved and/or injure the rescuers as well.
I was pulled out of the pool (which probably did more damage) seconds after I broke my neck. My rescuers thought I was drowning (which I was) and had no way of knowing I had broken my neck until I was out of the water. I was taken away by ambulance quickly and had the best available treatments, in a clean, modern intensive care unit and yet I still almost died. Four years later, I still require special equipment and aide on a daily basis. I rely on government programs for medical supplies, medicine, medical care and day to day help. Its heartbreaking to know that the people in Haiti have no support systems or programs to fall back on. I'm so glad that there are groups out there that can hopefully coordinate their efforts to help give those people with spinal cord injures the care they need. Until a cure is found, paralysis is a lifelong condition and the survivors will need a tremendous amount more help than able bodied survivors. It will be a miracle if many people manage to pull through "recovery" and be stable enough to continue on with their lives. This earthquake has already robbed too many people of their homes, possessions, loved ones and health. Although we can never get back all the lives lost, I hope we can help give Haiti an even better system & infrastructure than they had before the earthquake.For those living with paralysis, they will need more than just the short term rescue efforts. They will need a system stable enough to provide help long after the cities are rebuilt. I hope that there will be a future filled with the care and support services for the Haitian people. I'm sure the country can rebound and advance if its people are given a fighting chance.
My heart goes out to all the people suffering in Haiti and to all the people that are helping the recovery efforts.
Given my own injury (C4 complete) I understand all to well how much care these people need and how critical those first few days/hours are, after sustaining a spinal cord injury. I can only begin to imagine the pain and suffering the Haitian people are going through. It is understandable that the people with spinal cord injuries are being injured further in the desperation to save their lives. I'm sure the average person helping to rescue or free people from the rubble has no way of knowing how severely someone might be wounded. Even if it's clear that someone has been paralyzed, there is such limited access to equipment that I'm sure the priority is just getting the person in to see a doctor with what ever means they have to bring them there. Quick access to medical care is crucial with any severe injury and it's almost unbelievable that people are surviving days trapped beneath the wreckage. It is a race against the clock for the rescuers and survivors. The survivors need medical care as quickly as possible and the rescuers have to move as fast as they can for their own safety as well. It must be terrifying having to worry about tremors which could possibly kill the people still waiting to be saved and/or injure the rescuers as well.
I was pulled out of the pool (which probably did more damage) seconds after I broke my neck. My rescuers thought I was drowning (which I was) and had no way of knowing I had broken my neck until I was out of the water. I was taken away by ambulance quickly and had the best available treatments, in a clean, modern intensive care unit and yet I still almost died. Four years later, I still require special equipment and aide on a daily basis. I rely on government programs for medical supplies, medicine, medical care and day to day help. Its heartbreaking to know that the people in Haiti have no support systems or programs to fall back on. I'm so glad that there are groups out there that can hopefully coordinate their efforts to help give those people with spinal cord injures the care they need. Until a cure is found, paralysis is a lifelong condition and the survivors will need a tremendous amount more help than able bodied survivors. It will be a miracle if many people manage to pull through "recovery" and be stable enough to continue on with their lives. This earthquake has already robbed too many people of their homes, possessions, loved ones and health. Although we can never get back all the lives lost, I hope we can help give Haiti an even better system & infrastructure than they had before the earthquake.For those living with paralysis, they will need more than just the short term rescue efforts. They will need a system stable enough to provide help long after the cities are rebuilt. I hope that there will be a future filled with the care and support services for the Haitian people. I'm sure the country can rebound and advance if its people are given a fighting chance.
My heart goes out to all the people suffering in Haiti and to all the people that are helping the recovery efforts.
Sunday, December 20, 2009
Holiday Stress & Last Minute Gift Ideas
I’m feeling a bit stressed out, which is pretty normal for me during the holiday season. The holidays bring about so many mixed emotions. This has been a stressful time of the year for me my whole life. Growing up with two sets of parents (both divorced and remarried) can get overwhelming at times. You can’t be at two places at once, so you end up celebrating the same holiday multiple times. The celebrating, food and spending time with the family is always great; it’s the traveling & running around that is exhausting. Just getting to see the whole family can be challenging (for big or divorced families), not to mention attending holiday parties with friends and coworkers or spending time with your significant other’s family. Although I still do enjoy the winter holidays, some years I’ve felt like I needed to take a vacation to recoup from my winter holiday (be it school, college or working as a teacher).
The gift giving factor is what really makes the winter holidays (Hanukkah, Christmas, Kwanza, etc) more stressful. I’m the type of person that loves to shop and when I was still on my feet I’d stay at the mall for hours and get all my Christmas shopping done in one day. I find shopping in the mall less enjoyable since my accident, because it’s much harder to maneuver a wheelchair through big crowds. You would think a wheelchair would make it easier to be noticed and that people would take extra consideration in letting you get through the congestion of shoppers, but I find that most people walk around in a daze or are too focused on themselves to pay attention. Not to mention, people have a tons of bags, boxes and other obstacles to get tangled in. The stores themselves are not really laid out with wheelchair access in mind either and it can be difficult to impossible to pass through narrow rows of merchandise. There are even some stores I don’t even try to enter (like Claire’s) because they are so tiny to begin with and I usually can’t see half the merchandise over people’s heads.
It can get quite expensive when you have to buy for double the amount of people (two sets of parents, four sets of grandparents, siblings, etc). I don’t mind spending money on my loved ones (if I have it). In fact, I rather enjoy gift giving. It’s the process of finding and choosing the right gift for each person that can be a hassle. Having picky or difficult people to buy for can make staying on a budget challenging if their list of wants is small. I’m pretty fortunate in that most people I know are easy to buy for, because they have hobbies or specific interests. Luckily nowadays almost all stores offer online shopping as an alternative. Most websites even let you create wish lists, which is very helpful! Wish lists provide the buyer a range of things to choose from and the receiver still has some element of surprise when they are opening the gift. Wish lists are great because they remove the stress of figuring out things like sizes and colors. These days I do almost all my shopping online instead of going to the mall and wished all my friends & family would send me wish lists.
I tend to wait last minute to shop for other people, because it kills me to wait to give the gifts. If I shopped for Christmas in October, I’d end up buying double; having already given the first set of gifts away. When I was on my feet I could wait until December 22nd and still get everything accomplished. Online shopping requires more time and planning, because you have to consider the time it will take the items to be delivered to you. Naturally, most sites offer fast shipping alternatives, but be ready to pay an arm and a leg for it. I don’t think it’s worth buying something online if I have to pay half or more than the cost of the item itself in shipping fees. Convenience is nice, but it’s absurd to pay double the price of something I could buy around the corner. This year I’m stuck going to the stores, because I’ve procrastinated too long and have yet to buy a single gift for any of the adults in my life (shopping for kids is fun). I’d much prefer doing everything online, but that’s what I get for continuously putting it off.
If you still haven’t tried online shopping, I recommend you do. The important thing to keep in mind when you shop online is keeping your credit card information secure. Only shop on big name websites that represent well known retailers such as: Best Buy, Target, Amazon and ToysRUs. You might find seemingly great deals on smaller websites, but you are taking a big risk trusting “mom & pop” shops with your info. A smart thing to do is set up a PayPal account. PayPal is a service that acts as an intermediary between your bank and the retailer. They keep your info secure and a lot of retailers let you pay using PayPal (even smaller businesses). Try to minimize the number of websites that don’t accept PayPal; the fewer sites that have your info, the better. Most websites let you create an account, which can save your shipping and billing addresses along with your credit card info. I normally create accounts for the convenience of saving addresses and the ability to track my orders. However, I do not recommend saving your credit card information on multiple sites. Most online stores have multiple payment options and you can tailor your account to only save certain information. You can easily keep track of what you buy by having the order confirmations emailed to you or you can print out a paper copy. Online shopping is also a fast and easy way to compare store prices and read reviews on products.
If you are like me and are still looking for ideas and/or still have shopping left to do, I have a few suggestions that might help you out. As I said before, I know how hard it can be to choose the right gift for the right person. It might seem even more difficult when shopping for the people in your life with disabilities. The first obstacle can be the high price of anything labeled for use with people with disabilities. In my experience, I’ve found the equipment and supplies I use are almost always marked higher if they come from a store that is geared to sell to the disabled and/or medical community. It’s a sad fact. In many cases high prices are caused by the need for customized products and/or because manufacturers aren’t producing modalities and equipment on a large scale. That said, there are some really great gifts out there and many of them don’t require specialty shops. Some gift ideas just require a little ingenuity and creative thinking.
Although I chose these gift ideas with the disabled community in mind (spinal cord injuries and paralysis in particular), they are applicable to everyone. Here are a few of my suggestions for this holiday season:
1. I think we all too often forget that during the holidays our focus is supposed to be on the spirit of giving, spending time with loved ones and in many cases, religious traditions. Somehow those aspects of the holidays often get lost in the hustle and bustle of our commercialized society. That said, I think the very best gift you can give is a donation to a charity in the name or in honor of the person you’re buying for. For someone such as myself (with a chronic disease or permanent disability), I can’t think of a better gift. Giving to charities that support causes that the receiver deems important is like giving a double gift. You’re giving the hope to the person you gift and you give support to the cause itself. Most “causes” have official groups or organizations that raise funds for research for cures, awareness and/support. I suggest giving to well known organizations, such as The Christopher & Dana Reeve Foundation. There are even some websites that allow you to prioritize causes that are important to you and provide links to reputable charities; that way gift givers know exactly what causes/issues matter to you. www.giftback.com , www.justgive.org and www.heifer.org are three great examples of charitable donation gifting sites.
2. One of the hot items this year is e-readers. If you’re not familiar with the term, an e-reader or e-book is an electronical device that lets you store hundreds (even thousands) of books, magazines, journals and newspapers into a very convenient and small amount of space. The e-readers that are for sale all range a bit in size from about six to nine inches in height, five to seven inches wide and under an inch thick. They are incredibly light; usually weighing less than an average hardcover book. The big three right now are: Amazon’s Kindle, Barnes & Noble’s Nook and the Sony Reader. All three e-readers are fairly easy to use and can even be controlled using a mouth stick. All three e-readers allow you to purchase & download books using Wi-Fi, but you need to check coverage areas of each company before you buy. All of the readers use e-ink technology, which mimics the look of paper and doesn’t have glare issues like you’d have reading from a PC. You can even jot down annotations & highlight words in e-books and they all include built in dictionaries. While they all do relatively the same stuff, there are a few key differences you should consider.
• The Kindle has been around the longest and it currently comes in two models. The KindleDX is larger than most e-books at 9 inches, but it is still incredibly light & thin. Kindle DX gives you the option to read horizontally or vertically. Its unique selling point is its text to speech figure that can “read” text aloud. Unfortunately, the TTS (text to speech) feature is not compatible with all books. Some authors complained that it was discouraging consumers from buying audio books. I disagree. There is no comparison to a human reader versus a computer reader. TTS is nice for someone such as myself, because I can listen to books in bed without setting up all the equipment I need to read a traditional book. TTS doesn’t provide the tone or inflection a human reader could, nor does it understand the context of the words it reads. I view TTS as a convenient alternative to reading (especially for someone without hand function).Audio books are available as well if you get tired of listening to everything in a monotone, robotic voice. Kindles are only available through Amazon’s website, so your only way to test one out is to order one. You also need to buy all of your books and periodicals through Amazon. The nice thing is that the Kindle is ready to use straight out of the box. You don’t need a PC to access the web or use to the Kindle. There is a basic web browser included. It also includes 3G global coverage. There are no fees or contracts and Amazon will back up your books on their site. A couple of other selling points include: a built in PDF readers (or converter depending on which model), personal document service, Wikipedia, button controls for both left and right handed people and compatible applications for the iPhone and Blackberry.
• The Sony Reader comes in three models. The Pocket Edition , Touch Edition & Daily Edition, which is a bit larger than the first two. The Daily Edition is the closest in comparison to Kindle DX. It can be read horizontal or vertically and has 3G wireless capabilities. The unique selling point against the Kindle was its touch screen controls. However, the Nook also has touch controls and can compete directly against Sony Reader. There aren’t many unique things about the Sony Reader, but unlike the Kindle, you can see them in person and try them out in various stores. The other nice thing about the Sony Readers is the wide range of sites from which you can purchase books. You can find many books for cheaper prices or even for free. Sony gives you more buying options, whereas its two competitors make you buy books through them.
• The Barnes & Noble Nook was only just released (December, 2009), so there are still a few kinks that might need to be fixed and not many people have one yet. The Nook is available to try in person and the Wi-Fi service is free for all Nook owners, within B&N stores. That said, the Nook has a few unique features that make it stand out. There are two touch screens on the Nook; the upper area is for reading text and uses e-ink technology, while the bottom features a LCD scroll bar with color pictures of book covers (similar to iPods that can display album covers). The second feature exclusive to the Nook is the ability to share books with other Nook users. The LendMe feature is a nice option that many book lovers will enjoy because it allows them to share favorite e-books just the same as they would a paper copy.
My descriptions are good to get you started, but they are just short overviews. I suggest you visit each website and do a bit of comparison shopping yourself (www.amazon.com , www.sonystyle.com & www.barnesandnoble.com/nook ). Try reading reviews from nonbiased websites (www.cnet.com or www.pcmag.com are good) as well, not just the manufacturer’s websites. I’m leaning towards the Kindle for myself. I really like the TTS feature. The touch screen navigation is the only thing the Kindle e-books are lacking and I’m sure whenever Amazon decides to release a newer model it will include a touch screen as well. They are all a bit pricey (around $300), so you’ll want to weigh all the options. I’m an avid reader and although I love my books, they take up a ton of space. I think it’s pretty amazing to able to have a virtual library of books that can travel with you wherever you go! As a bonus, e-books are “green” in that they save paper and space. I think e-books are great gifts for anyone.
3. Getting dressed can be stressful for me, as I need help and have safety issues to consider. I tend to wear easy stuff like sweats and t-shirts if I’m just going to be in my apartment. I’d compare my style now (at home) to how I used to dress if I was going to the gym. I try to make life a little easier for my aides by only wearing my “normal” clothes when I have guests or go out. Much of my clothes from before my accident (pants especially) are no longer appropriate for me and I’ve given bags & bags full to charity. Being paralyzed and confined to a chair, I have to consider ways that clothes might damage my skin or create problems that I can’t feel. Poor circulation can create swelling, so tight or form fitting clothes can create pressure sores and/or constrict my catheter. I stay away from clothes with buttons, rhinestones, zippers or beading on the back, because leaning up against those things can break down skin quickly and create sores.
I can’t raise my arms over my head, which poses a problem for getting on certain shirts and jackets. Although the clothes technically fit me, most are not designed with disabilities in mind (it’s assumed that adults put their own clothes on).That doesn’t mean I have to wear hospital gowns or pajamas all the time. I can still wear trendy clothes as long as I keep those issues in mind and buy a bigger size if I’m unsure. If you are buying clothes for someone in a wheelchair you should keep the issues I’ve mentioned in mind. You might also want to check out specialty shops that sell clothes designed exclusively for people who use wheelchairs. I haven’t come across many that sell trendy or youthful styles (most are designed for the elderly), but you can find basics. www.professionalfit.com is one of the better sites I found.
4. My last gift idea is for the gamers in your life. Just because someone has a disability doesn’t necessarily mean they can’t enjoy the computer or video games. I was big into gaming before my accident and was really bummed out that I wouldn’t be able to play games again; after my accident, since I have no control below my chest. I only have use of my neck, shoulders and biceps. However, I’ve learned and/or invented ways that allow me still play games using a mouth stick. Luckily, there are tons of gaming options out there and hands are not necessarily required! Nintendo has developed some pretty innovative games/gaming systems that don’t rely solely on mashing buttons. Depending on the person’s needs and abilities, Nintendo Wii can be adapted to use with your arms, head or sip and puff. There are even sites that customize controllers to make it easier for people with limited hand function (www.gimpgear.us & www.quadcontrol.com). Nintendo DS is a portable system that has dozens of touch based games. You can figure out the game controls by reading reviews online (www.ign.com). Sometimes the back of the game box or online store description give enough information to determine if it’s touch based. I own over 30 Nintendo DS games that I’ve been able to play (and beat in many cases) by using a mouth stick. Ordinarily, a person with normal hand function would use the stylus stick that comes with the DS, but it’s a bit too thin and way too short to use by mouth. I adapted a mouth stick by adding a knitting needle inside of it, so that it has a pointy tip like a stylus, but is long enough to use. Using a mouth stick also gives me better control since it is thicker than a regular stylus and less flimsy.
As for the computer, there are hundreds of games that only require a mouse to play. I have a trackball mouse, which allows me to move just the ball and not the entire mouse itself (I use Kensington’s Orbit Optical Trackball, which only costs about $30). You can purchase games online or buy the software in stores. Most games in the following genres can be played by mouth stick: match 3 (such as Bejeweled), Mahjong, hidden objects (such the Huntsville Mystery Case Files series), simulation (such as Sims 3) and time management (such as Farmville). There are emulation programs that let you play console games (Xbox, PS3 & Gamecube for example) on your PC and users can customize key settings. Most console emulators are not licensed by the gaming companies, so I’d avoid going that route. Lastly, there are some pretty neat gadgets out there that can be used by people with little to no motor function; such as someone with a high level spinal cord injury like Christopher Reeve. These gadgets use eye movements or speech recognition to control a wide range of functions on the computer (www.nuance.com & www.eyegaze.com are two examples). You can surf the web and write with both types of equipment/software and even create art with the optical devices. This type of technology can be a gift of freedom to those people who are otherwise “locked in.”
I hope my tips are helpful. Even if you’re done with all your holiday shopping this year (you’re lucky!), you can use these ideas for any gift giving occasion. I will be braving the mall and the crowds this year (and possibly snow). Try and choose meaningful & practical gifts that fit in your budget and remember that the presents aren’t the most important part of holidays. Wishing everyone a happy and safe holiday season!
The gift giving factor is what really makes the winter holidays (Hanukkah, Christmas, Kwanza, etc) more stressful. I’m the type of person that loves to shop and when I was still on my feet I’d stay at the mall for hours and get all my Christmas shopping done in one day. I find shopping in the mall less enjoyable since my accident, because it’s much harder to maneuver a wheelchair through big crowds. You would think a wheelchair would make it easier to be noticed and that people would take extra consideration in letting you get through the congestion of shoppers, but I find that most people walk around in a daze or are too focused on themselves to pay attention. Not to mention, people have a tons of bags, boxes and other obstacles to get tangled in. The stores themselves are not really laid out with wheelchair access in mind either and it can be difficult to impossible to pass through narrow rows of merchandise. There are even some stores I don’t even try to enter (like Claire’s) because they are so tiny to begin with and I usually can’t see half the merchandise over people’s heads.
It can get quite expensive when you have to buy for double the amount of people (two sets of parents, four sets of grandparents, siblings, etc). I don’t mind spending money on my loved ones (if I have it). In fact, I rather enjoy gift giving. It’s the process of finding and choosing the right gift for each person that can be a hassle. Having picky or difficult people to buy for can make staying on a budget challenging if their list of wants is small. I’m pretty fortunate in that most people I know are easy to buy for, because they have hobbies or specific interests. Luckily nowadays almost all stores offer online shopping as an alternative. Most websites even let you create wish lists, which is very helpful! Wish lists provide the buyer a range of things to choose from and the receiver still has some element of surprise when they are opening the gift. Wish lists are great because they remove the stress of figuring out things like sizes and colors. These days I do almost all my shopping online instead of going to the mall and wished all my friends & family would send me wish lists.
I tend to wait last minute to shop for other people, because it kills me to wait to give the gifts. If I shopped for Christmas in October, I’d end up buying double; having already given the first set of gifts away. When I was on my feet I could wait until December 22nd and still get everything accomplished. Online shopping requires more time and planning, because you have to consider the time it will take the items to be delivered to you. Naturally, most sites offer fast shipping alternatives, but be ready to pay an arm and a leg for it. I don’t think it’s worth buying something online if I have to pay half or more than the cost of the item itself in shipping fees. Convenience is nice, but it’s absurd to pay double the price of something I could buy around the corner. This year I’m stuck going to the stores, because I’ve procrastinated too long and have yet to buy a single gift for any of the adults in my life (shopping for kids is fun). I’d much prefer doing everything online, but that’s what I get for continuously putting it off.
If you still haven’t tried online shopping, I recommend you do. The important thing to keep in mind when you shop online is keeping your credit card information secure. Only shop on big name websites that represent well known retailers such as: Best Buy, Target, Amazon and ToysRUs. You might find seemingly great deals on smaller websites, but you are taking a big risk trusting “mom & pop” shops with your info. A smart thing to do is set up a PayPal account. PayPal is a service that acts as an intermediary between your bank and the retailer. They keep your info secure and a lot of retailers let you pay using PayPal (even smaller businesses). Try to minimize the number of websites that don’t accept PayPal; the fewer sites that have your info, the better. Most websites let you create an account, which can save your shipping and billing addresses along with your credit card info. I normally create accounts for the convenience of saving addresses and the ability to track my orders. However, I do not recommend saving your credit card information on multiple sites. Most online stores have multiple payment options and you can tailor your account to only save certain information. You can easily keep track of what you buy by having the order confirmations emailed to you or you can print out a paper copy. Online shopping is also a fast and easy way to compare store prices and read reviews on products.
If you are like me and are still looking for ideas and/or still have shopping left to do, I have a few suggestions that might help you out. As I said before, I know how hard it can be to choose the right gift for the right person. It might seem even more difficult when shopping for the people in your life with disabilities. The first obstacle can be the high price of anything labeled for use with people with disabilities. In my experience, I’ve found the equipment and supplies I use are almost always marked higher if they come from a store that is geared to sell to the disabled and/or medical community. It’s a sad fact. In many cases high prices are caused by the need for customized products and/or because manufacturers aren’t producing modalities and equipment on a large scale. That said, there are some really great gifts out there and many of them don’t require specialty shops. Some gift ideas just require a little ingenuity and creative thinking.
Although I chose these gift ideas with the disabled community in mind (spinal cord injuries and paralysis in particular), they are applicable to everyone. Here are a few of my suggestions for this holiday season:
1. I think we all too often forget that during the holidays our focus is supposed to be on the spirit of giving, spending time with loved ones and in many cases, religious traditions. Somehow those aspects of the holidays often get lost in the hustle and bustle of our commercialized society. That said, I think the very best gift you can give is a donation to a charity in the name or in honor of the person you’re buying for. For someone such as myself (with a chronic disease or permanent disability), I can’t think of a better gift. Giving to charities that support causes that the receiver deems important is like giving a double gift. You’re giving the hope to the person you gift and you give support to the cause itself. Most “causes” have official groups or organizations that raise funds for research for cures, awareness and/support. I suggest giving to well known organizations, such as The Christopher & Dana Reeve Foundation. There are even some websites that allow you to prioritize causes that are important to you and provide links to reputable charities; that way gift givers know exactly what causes/issues matter to you. www.giftback.com , www.justgive.org and www.heifer.org are three great examples of charitable donation gifting sites.
2. One of the hot items this year is e-readers. If you’re not familiar with the term, an e-reader or e-book is an electronical device that lets you store hundreds (even thousands) of books, magazines, journals and newspapers into a very convenient and small amount of space. The e-readers that are for sale all range a bit in size from about six to nine inches in height, five to seven inches wide and under an inch thick. They are incredibly light; usually weighing less than an average hardcover book. The big three right now are: Amazon’s Kindle, Barnes & Noble’s Nook and the Sony Reader. All three e-readers are fairly easy to use and can even be controlled using a mouth stick. All three e-readers allow you to purchase & download books using Wi-Fi, but you need to check coverage areas of each company before you buy. All of the readers use e-ink technology, which mimics the look of paper and doesn’t have glare issues like you’d have reading from a PC. You can even jot down annotations & highlight words in e-books and they all include built in dictionaries. While they all do relatively the same stuff, there are a few key differences you should consider.
• The Kindle has been around the longest and it currently comes in two models. The KindleDX is larger than most e-books at 9 inches, but it is still incredibly light & thin. Kindle DX gives you the option to read horizontally or vertically. Its unique selling point is its text to speech figure that can “read” text aloud. Unfortunately, the TTS (text to speech) feature is not compatible with all books. Some authors complained that it was discouraging consumers from buying audio books. I disagree. There is no comparison to a human reader versus a computer reader. TTS is nice for someone such as myself, because I can listen to books in bed without setting up all the equipment I need to read a traditional book. TTS doesn’t provide the tone or inflection a human reader could, nor does it understand the context of the words it reads. I view TTS as a convenient alternative to reading (especially for someone without hand function).Audio books are available as well if you get tired of listening to everything in a monotone, robotic voice. Kindles are only available through Amazon’s website, so your only way to test one out is to order one. You also need to buy all of your books and periodicals through Amazon. The nice thing is that the Kindle is ready to use straight out of the box. You don’t need a PC to access the web or use to the Kindle. There is a basic web browser included. It also includes 3G global coverage. There are no fees or contracts and Amazon will back up your books on their site. A couple of other selling points include: a built in PDF readers (or converter depending on which model), personal document service, Wikipedia, button controls for both left and right handed people and compatible applications for the iPhone and Blackberry.
• The Sony Reader comes in three models. The Pocket Edition , Touch Edition & Daily Edition, which is a bit larger than the first two. The Daily Edition is the closest in comparison to Kindle DX. It can be read horizontal or vertically and has 3G wireless capabilities. The unique selling point against the Kindle was its touch screen controls. However, the Nook also has touch controls and can compete directly against Sony Reader. There aren’t many unique things about the Sony Reader, but unlike the Kindle, you can see them in person and try them out in various stores. The other nice thing about the Sony Readers is the wide range of sites from which you can purchase books. You can find many books for cheaper prices or even for free. Sony gives you more buying options, whereas its two competitors make you buy books through them.
• The Barnes & Noble Nook was only just released (December, 2009), so there are still a few kinks that might need to be fixed and not many people have one yet. The Nook is available to try in person and the Wi-Fi service is free for all Nook owners, within B&N stores. That said, the Nook has a few unique features that make it stand out. There are two touch screens on the Nook; the upper area is for reading text and uses e-ink technology, while the bottom features a LCD scroll bar with color pictures of book covers (similar to iPods that can display album covers). The second feature exclusive to the Nook is the ability to share books with other Nook users. The LendMe feature is a nice option that many book lovers will enjoy because it allows them to share favorite e-books just the same as they would a paper copy.
My descriptions are good to get you started, but they are just short overviews. I suggest you visit each website and do a bit of comparison shopping yourself (www.amazon.com , www.sonystyle.com & www.barnesandnoble.com/nook ). Try reading reviews from nonbiased websites (www.cnet.com or www.pcmag.com are good) as well, not just the manufacturer’s websites. I’m leaning towards the Kindle for myself. I really like the TTS feature. The touch screen navigation is the only thing the Kindle e-books are lacking and I’m sure whenever Amazon decides to release a newer model it will include a touch screen as well. They are all a bit pricey (around $300), so you’ll want to weigh all the options. I’m an avid reader and although I love my books, they take up a ton of space. I think it’s pretty amazing to able to have a virtual library of books that can travel with you wherever you go! As a bonus, e-books are “green” in that they save paper and space. I think e-books are great gifts for anyone.
3. Getting dressed can be stressful for me, as I need help and have safety issues to consider. I tend to wear easy stuff like sweats and t-shirts if I’m just going to be in my apartment. I’d compare my style now (at home) to how I used to dress if I was going to the gym. I try to make life a little easier for my aides by only wearing my “normal” clothes when I have guests or go out. Much of my clothes from before my accident (pants especially) are no longer appropriate for me and I’ve given bags & bags full to charity. Being paralyzed and confined to a chair, I have to consider ways that clothes might damage my skin or create problems that I can’t feel. Poor circulation can create swelling, so tight or form fitting clothes can create pressure sores and/or constrict my catheter. I stay away from clothes with buttons, rhinestones, zippers or beading on the back, because leaning up against those things can break down skin quickly and create sores.
I can’t raise my arms over my head, which poses a problem for getting on certain shirts and jackets. Although the clothes technically fit me, most are not designed with disabilities in mind (it’s assumed that adults put their own clothes on).That doesn’t mean I have to wear hospital gowns or pajamas all the time. I can still wear trendy clothes as long as I keep those issues in mind and buy a bigger size if I’m unsure. If you are buying clothes for someone in a wheelchair you should keep the issues I’ve mentioned in mind. You might also want to check out specialty shops that sell clothes designed exclusively for people who use wheelchairs. I haven’t come across many that sell trendy or youthful styles (most are designed for the elderly), but you can find basics. www.professionalfit.com is one of the better sites I found.
4. My last gift idea is for the gamers in your life. Just because someone has a disability doesn’t necessarily mean they can’t enjoy the computer or video games. I was big into gaming before my accident and was really bummed out that I wouldn’t be able to play games again; after my accident, since I have no control below my chest. I only have use of my neck, shoulders and biceps. However, I’ve learned and/or invented ways that allow me still play games using a mouth stick. Luckily, there are tons of gaming options out there and hands are not necessarily required! Nintendo has developed some pretty innovative games/gaming systems that don’t rely solely on mashing buttons. Depending on the person’s needs and abilities, Nintendo Wii can be adapted to use with your arms, head or sip and puff. There are even sites that customize controllers to make it easier for people with limited hand function (www.gimpgear.us & www.quadcontrol.com). Nintendo DS is a portable system that has dozens of touch based games. You can figure out the game controls by reading reviews online (www.ign.com). Sometimes the back of the game box or online store description give enough information to determine if it’s touch based. I own over 30 Nintendo DS games that I’ve been able to play (and beat in many cases) by using a mouth stick. Ordinarily, a person with normal hand function would use the stylus stick that comes with the DS, but it’s a bit too thin and way too short to use by mouth. I adapted a mouth stick by adding a knitting needle inside of it, so that it has a pointy tip like a stylus, but is long enough to use. Using a mouth stick also gives me better control since it is thicker than a regular stylus and less flimsy.
As for the computer, there are hundreds of games that only require a mouse to play. I have a trackball mouse, which allows me to move just the ball and not the entire mouse itself (I use Kensington’s Orbit Optical Trackball, which only costs about $30). You can purchase games online or buy the software in stores. Most games in the following genres can be played by mouth stick: match 3 (such as Bejeweled), Mahjong, hidden objects (such the Huntsville Mystery Case Files series), simulation (such as Sims 3) and time management (such as Farmville). There are emulation programs that let you play console games (Xbox, PS3 & Gamecube for example) on your PC and users can customize key settings. Most console emulators are not licensed by the gaming companies, so I’d avoid going that route. Lastly, there are some pretty neat gadgets out there that can be used by people with little to no motor function; such as someone with a high level spinal cord injury like Christopher Reeve. These gadgets use eye movements or speech recognition to control a wide range of functions on the computer (www.nuance.com & www.eyegaze.com are two examples). You can surf the web and write with both types of equipment/software and even create art with the optical devices. This type of technology can be a gift of freedom to those people who are otherwise “locked in.”
I hope my tips are helpful. Even if you’re done with all your holiday shopping this year (you’re lucky!), you can use these ideas for any gift giving occasion. I will be braving the mall and the crowds this year (and possibly snow). Try and choose meaningful & practical gifts that fit in your budget and remember that the presents aren’t the most important part of holidays. Wishing everyone a happy and safe holiday season!
Monday, November 16, 2009
One Degree of Separation Campaign
The Christopher & Dana Reeve Foundation is running a campaign called "One Degree of Separation," in attemps to help raise funds for research to find a cure to paralysis. Their goal is to raise $1.275 million. According to a 2009 study conducted by the CDRF, there are approximately 6 million people living with paralysis. Of the six million, 1.275 people are living with paralysis due to spinal cord injuries. The campaign targets those of us who have been impacted by spinal cord injuries. The mission, is to get each person in the spinal cord injury community (this includes, families, friends, doctors, nurses, etc.) to donate just $1 dollar. '
Nowadays one dollar can't get you very much. Imagine however, what an impact one dollar could make if everyone contributed. I think giving a dollar for a cure is certainly a bargain! A cure would be a priceless gift to those of us living with paralysis. One dollar is a small investment that has the potential to make huge impact on millions of lives.
The campaign also has a website where you can read stories and see pictures of people that are living with paralysis. I think it's a great way to see the diversity of the people affected by spinal cord injuries and puts it a face to the problem. It's wonderful that the CDRF took the time to compile these individual stories. The pictures and stories can touch people's hearts in such a way that facts and statistics can not.
Just remember that behind every statistic there is a real person. You'll find my picture and story on the site, among many others. I encourage you to take the time to read the stories and share the information with family and friends. Most importantly, please donate a dollar.
I've included a link on my website and below.
http://www.reevefoundation.org/
Nowadays one dollar can't get you very much. Imagine however, what an impact one dollar could make if everyone contributed. I think giving a dollar for a cure is certainly a bargain! A cure would be a priceless gift to those of us living with paralysis. One dollar is a small investment that has the potential to make huge impact on millions of lives.
The campaign also has a website where you can read stories and see pictures of people that are living with paralysis. I think it's a great way to see the diversity of the people affected by spinal cord injuries and puts it a face to the problem. It's wonderful that the CDRF took the time to compile these individual stories. The pictures and stories can touch people's hearts in such a way that facts and statistics can not.
Just remember that behind every statistic there is a real person. You'll find my picture and story on the site, among many others. I encourage you to take the time to read the stories and share the information with family and friends. Most importantly, please donate a dollar.
I've included a link on my website and below.
http://www.reevefoundation.org/
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