Regret & Forgiveness

I checked my website email account today and discovered a few new messages. One of the emails was from someone who had watched the episode of Soul Survivors that I did, on Youtube. He asked me if I often re-live (in my thoughts) the day of my accident and how I deal with regret. I thought they were great questions and want to share my response in the form of a blog, since I'm sure there are many other people out there that can relate.

Regret and forgiveness are two things I struggle with every day. I think the worst part about my accident (other than the consequences) is the fact that I did this to myself. I've experienced a lot of horrible things since that day. One of the worst things that happened right after my injury, was the fact that some of my closest friends and family made my situation worst for me, by arguing, accusing, blaming, judging and guilting me and one another. Everyone deals with grief and trauma differently and a lot of things that people in my life at the time, did and said, really shocked me. It is very true that people show their true colors, when you are at your lowest point. Some people soar and go above and beyond your wildest dreams and show you support and love you never expected. Other people shut down, close you out and disappoint you. The surprise comes in when people you've trusted your entire life let you down. They say love is unconditional, but I've learned that unfortunately, that is not always the case.

It has been incredibly hard for me to deal with all the loss and drastic changes that I've experienced. Many of the people that claim to love me, say it is sometimes equally painful (or so they think) for them, to see me suffer. The key difference is, I have no escape. I can't put my paralysis by the wayside when it gets too tough. I don't get to go back to my normal life or choose to remove myself from the situation. My family and friends have the choice to run from the situation, or at the very least, distance themselves, distract themselves or focus on other things. Some people might feel they're not strong enough to handle being in my life. For them, it is easier to dull the pain by turning a blind eye and remove themselves from the situation. At times, it upsets me, because I consider it selfish and cowardly. No matter how sad I am, how hard I try or desperate I might feel, I'm stuck. I either deal with it, or go mad. It's challenging to find strength, when people on the outside are not supportive. You can't help but think, "What's with them? They still have everything, just the same as before. They get to leave here and go on with there life." On the other hand, I suppose it's not fair of me to expect other people to put themselves through discomfort or drama, on my behalf. My family situation is tangled and broken, and added to the difficulty of my situation. My parents divorced when I was a baby and I've bounced back & forth between two families my entire life. The animosity and tension amongst my two families bubbled over after my injury and added a ton of extra stress and pain to my already horrible situation. Despite all the tears, anger and hurtful words, I've been able to forgive everyone, except myself. I guess this stems from the fact that I love my family and friends, but hate myself. It is easy to forgive someone you love, despite how much they hurt you; at least it is for me.

I've never had terriffic self esteem. I've always been hard on myself and much more critical of my own flaws, than the flaws of others. I think the perfectionist in me helped me to achieve a ton of positive things in my life, but it has certainly added anxiety and stress as well. It's very hard for me to be totally satisfied with what I do. I'm not competitive by nature, with other people, but I'm constantly striving to fit the vision inside my head (of myself, goals and aspirations). I've always pushed myself to strive for really high goals and try hard to achieve them. However, I managed to unravel all my hard and shatter my dreams in the matter of seconds. I destroyed everything I worked for with one very stupid mistake. The fact that my mistake seems so obviously idiotic, makes it all the harder to deal with and admit to the fact. Although a lot of people have told me I've made them proud (in how I've dealt with my paralysis), I'm a disappointment to myself.

I don't have any answers for myself, as to why I did what I did. Perhaps, if I had had some sort of plan in mind (like trying to do a shallow dive) and botched it, at least I'd be able to look at it as just being a mistake. However, I have no logical answer and I don't remember any specific intentions. I just dove in, blindly, without thinking. The frustrating part of it all, is that I never dove (as an adult). Swimming was one of the very few physical activities I enjoyed and looked forward to each year. I'd been swimming almost as long as I'd been walking. My family had above ground pools throughout my entire childhood and I was familiar with pool from my accident. I also had regular access (community pool and family) to in-ground pools growing up and as an adult. The last time I can remember ever diving head first into a pool, would've been before the age of eleven. I attended a pool party around that age, which turned me off from diving. Nothing particularly drastic happened at that party, I just recall it being the first time I felt afraid or thought I might hurt myself swimming. I vividly remember climbing the ladder to the high dive board, walking to the edge of the board, preparing to dive and chickening out last minute, to the annoyance of everyone behind me. I can't remember if I was forced to jump in, or if I climbed back down the ladder, but I never attempted a dive again, until the night of my accident.

I normally liked to jump into pools feet first or cannon ball style. The thought of getting accustomed to the water temperature inch, by inch, does not appeal to me. I much rather just take the plunge and be done with it all at once. I know I was feeling lazy the night of the accident and climbing up onto the side of the pool seemed the fastest way into the water. It would be no surprise to me if I would've chosen to jump into the pool, feet first and had broken my leg, stubbed my toes, or banged up my feet. That would make sense. That would sound like me. Diving in, head first, into sixty inches of water makes no sense and doesn't mesh with my character.

For a long time I beat myself up over the fact that I had been drinking that night. Those guilty (guilty of what, I'm not sure) feelings were only exacerbated by the blame and shame that was drilled into me, over and over again, during the first weeks after my accident. At my weakest point, my mistake was thrown back at me, time and time again and the story became exagerated and distorted. I was experiencing fevers 106 degrees and above, hallucinated and heavily drugged. I was living off of machines and was close to death. Despite all that was happening, I had to endure (some) my loved ones telling me how foolish I was and picking at every little flaw I had. I can remember feeling like dirt, here I was, beating myself up more than anyone, fighting to live, and yet certain people felt it necessary to make me feel worst. Aspects of my life were blown out of proportion and lies were made. I was weak, with cloudy thoughts and the desperation of not knowing what my life was going to be like. My loved ones were fighting and all I could do at that point was cry and try to make it seem like it would ok. I really believed that if I tried hard enough, I could heal myself and make up for my dumb mistake. Looking back, it all makes me very angry. I'm angry at myself, for not being stronger to stand my ground and be more in control of the situation, but at the time, my life had just dissolved in front of me and all I could think about was making it all right again.

Naturally, I think I'll always wonder how much the alcohol contributed to my decisions that night. I'll always wonder if those drinks influenced me to dive. I certainly wasn't falling down drunk, nor had I really felt drunk at the time. However from the minute I can remember waking up in the ER, that became the focus point of it all. The alcohol became the scapegoat as to why I dove and the guilt just piled on and on. It's only recently that I've forgiven myself a tiny bit over the fact that I had drank. At the time, I was twenty-four years old. I had bought my own drinks and had no intention of driving home that night. I only had had a few, and was obviously coordinated enough to scale the side of the pool and balance myself on top of the rim. It apparently had seemed shocking to some (obvious by their reactions), that a twenty four year old teacher might like to relax with friends and drink on the weekends. At the time, I let that guilt and shame eat away at me. Fortunately for my sanity, I've since realized that I was not an anomaly. Even now (pushing thirty), tons of my hardworking, educated, professional friends enjoy drinks on the weekends, have parties with friends and enjoy going out. I'm not exactly sure why I was made to feel like an ax murderer, for having a few drinks, but I was. I was balancing a lot of things that year and did stretch myself too thin at times, but that's hardly a crime. I take comfort in the fact that I know I had my life on track (it's easy to judge, when you only see one piece of the puzzle) and had accomplished a lot of things in my life that I'm still proud of. I no longer feel wrong for drinking, however much or little. I could sit here all day and list specific regrets for that day (changing our plans, going to the party, planning to swim, drinking, diving), but it's only because it's in hindsight and because of the overall consequence of the chain of events. I regret drinking because I'll always have that doubt over what role it played that night. I haven't had a sip of liquor since and made a promise to myself to never drink again; not because it's wrong or evil, but because I don't want to ever feel like I'm not 100% in control of my thoughts and decision making.

Drinking is just one of many regretful decisions I made that day. However, I only regret them because of what happened. Any other time, I wouldn't have regretted planning to swim; I'd swum at night before. I wouldn't normally regret the fact that we (me and my ex-boyfriend) had decided to go to the party last minute, instead of just staying home. I'd been swimming a million times before, had drank alcohol and had been to plenty of parties before that night, and had had a fun time and life continued on as usual. I'm sure millions of Americans will enjoy barbecues, drinking and swimming this summer without a problem. In fact, millions of people will do extremely risky things, like ride motorcycles, extreme sports, cliff diving, jump on trampolines, or just silly stunts for fun, and they will get hurt and walk away. Then there's the few thousand people that will get hurt and never walk again. For what ever reason, I was one of those thousand people, in the summer of 2005.

Since my injury, I see the world from an entirely different perspective. I see things on tv or when I go out, that make me cringe, because I know how close that person was to ending up like me. I watch shows like "World's Dumbest...Videos" and I'm just flabbergasted by the things I see people do on purpose and with a specific intent (One example, is a man sets a ladder up against his neighbor's tree, attempts to jump over his fence and land on his pool cover, but gets his foot caught on a rung on the way down and falls on the cement. Another example, is a boy that decided to ride his bicycle off the roof of his house, into a pile of snow down below.) and not only survive, but get up and walk away. At times, it makes me frustrated and angry when I see people do something similar to me or worst, and nothing happens. In fact, in the typical irony to my life, I watched (and recorded) a commercial the other day for Branchburg Pools, in which the salesman dives head first into a similar above ground pool and pops right back up to continue his sales pitch. Don't get me wrong, I don't want to see the other people paralyzed; I just can't help but think, "Why I am so different? Why didn't I pop back up? Why couldn't I walk away?" I certainly can't answer those questions, nor can anyone else.

Having no answers as to why I chose to do what I did, or reason as to why I have to pay such a high price, is extremely difficult to deal with. Given the fact that I was the one that ultimately dove (regardless of any outside contributing factors) into the pool, makes it near impossible to forgive myself. Especially given the fact, that I was an experienced swimmer and have no clear explanation as to what I was trying to do. Did I think I could shallow dive the length of the pool? Did I miscalculate the depth, because I couldn't see the bottom clearly? I'll never know for sure, but I will always regret the choice. The next question is, how do you forgive someone that ruined your life (stole your freedom, took your independence, robbed you of relationships, ended your career and in essence, killed a part of you.)? More importantly, what if you are that person? It's been five years, and I've yet to come up with any solutions. I just continue to try to do the best I can.


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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

Slacker

Lately I've been feeling like a complete slacker. Mostly because I have painted in a while, and have nothing concrete planned. It's important to me to feel like I'm contributing to society, especially now, since I'm no longer teaching. I want to be working. I miss my job terribly. Sometimes I think teaching full time, on an elementary school schedule would be near impossible for me, in my condition. On the other hand, I'm confident that I could still do my job, if I had the assistance I needed. Realistically, I'm just not sure that I'd have the health or stamina to handle a forty (more like sixty) hour work week. So I've tried my best to compromise and still feel like I'm giving something. I never want to feel like I'm just leeching off the system. There are already too many people out there that choose to be selfish and lazy and abuse the system. That's not me. 

The past two years I've had something to prepare for, every couple of months. Starting with the fundraiser, I sat for several newspaper interviews, did several online interviews, prepared for the three exhibits, painted for MFPA, went to an artist forum & did the two television shows. Now that it's all finished, I feel like I'm just sitting around. Part of the problem is the fact that I just don't feel well a lot of the time. My tolerance for the chair has been weakened, ever since I had that really bad bedsore on my upper thigh. After three or four hours I often feel feverish, have the chills or this weird tingly sensation I attribute to my catheter being pinched, or going to the bathroom. Either way, they are uncomfortable symptoms that often have no visible cause. I think it's just my body's way of letting me know I need to lay down. During the past six months or so, I've also been dealing with mysterious chest pains. It's not so much pain, as it is discomfort, but it is very annoying and makes it hard to relax. It started out as a tightness in between my ribcage and has since migrated to my left breast. At times, it feels like I have a huge boulder on top of the area. Other days, it feels like a giant is squeezing me with all its might. The worst is when it combines with my neck/shoulder pain. Most recently, I've been getting a throbbing pain all through my back, especially in my lower back. It's all very odd and frustrating, because I can't feel the exterior; I only feel the interior. Could I really be feeling my bones and muscles? I doubt it. Regardless, I've had all kinds of tests done in hopes of finding a cause and haven't had any luck. All my major organs are fine. My breathing is good and my blood work is fine. That leaves me with, "it could be stress or neurological pain." Great.

Long story short, is that I've been staying in bed quite a bit, these past six months or so. Mostly because I don't feel it's worth getting up, if I'm only going to feel crappy and crave being in bed the whole time. My painting has taken a back seat, as it is the one thing I can't do in bed. Even when I do get up, it's so few and far between that I usually don't feel like using the time to paint. However, then I feel guilty, like I'm being lazy. I have ideas ready; I just need to get started. It's especially hard to force myself when I know I don't have a set deadline or schedule. The shows kept me motivated. On the other hand, I start to think, if I got my butt in gear and painted more, I'd have more work to potentially exhibit. Instead, I've been trying to work on my website and I got some really nice color business cards printed up. I thought it would be more professional and an easy way to share my information. They're a custom design with one on my paintings on the front, along with my website address and a statistic about spinal cord injuries on the reverse side. Luckily, there are a million ways to promote yourself and/or a cause using the internet. I plan to continue working on computer stuff, but I really do need a push to paint!

In efforts of motivating myself, signed up to participate in something.called "the sketchbook project." It's run by a group called the "arthouse co-op, out of The Brooklyn Art Library. I just happened to click on a Facebook ad for it the other night, because it looked interesting. Basically, you sign up, they send you a sketchbook, you fill it & send it back. All of the sketchbooks then go on to exhibitions as part of a cross country tour. Each sketchbook gets abarcode, which can be used to track the book & see if people looked at it. The tour includes exhibits in a bunch of major cities: Brooklyn, NY Austin, TX San Francisco, CA Portland, MEAtlanta, GA &Chicago, IL. Once it's over, people will be able to look at them in the Brooklyn Art Library. I also paid a small extra fee, for the book to be digitized and added to an online library. It sounds like a really cool idea and I'm excited about participating. All I have to do is choose a theme, use the book & not change it's dimensions. I chose the theme "Help!" I thought it was perfect for the purpose of advocacy. I plan on making my sketchbook about paralysis and my hope for a cure. The cool thing is, I can sketch everything on my iPad and then print and transfer them to the book. So staying in bed is no excuse! It'll be interesting to document my progress and follow the book, on its travels. I'll definitely blog about it once I get started.

Speaking of blogs, I had read this article about a paralyzed pro gamer (Randy) & thought it would make for an interesting blog, if I could interview him. I took a chance & contacted him through his youtube site. He agreed & most likely I'll be talking to him soon, through Skype.It'll be cool to compare notes with Randy & hopefully make an interesting blog. I'm sure there are people out there that think they can't play video games, because of physical disabilities. I'm hoping by sharing mine and Randy's techniques and stories we can inspire some new gamers. I've always been into gaming, but it's been especially helpful in coping with my situation. Gaming provides a much needed escape and source of enjoyment. 

A Matter of Pride??

Living with paralysis is not easy. The smallest tasks that most people take for granted, require help. It'll be five years since my accident, this coming June and there are still aspects of my life that are as hard to cope with as they were back in 2005. My physical wounds only took a few months to heal (what little damage that could), but my mental and emotional wounds still feel fresh sometimes.

I know every situation is unique and the life people have before their spinal cord injury plays a big role in how they cope to the drastic changes of being paralyzed. I've come across quite a few people that had no real direction, or motivation at the time of their injury, had a weak support system of friends/family and few, too little skills to fall back on. It is a blessing and a curse that I had already finished college and had begun to establish my career, when I got hurt. I have a lot of skills, real world experience and a strong support system of friends and family. Despite all that, there are many days I find it incredibly hard to find reasons why I should keep trying; why I should move forward. The inner drive that helped me to be successful on me feet, has been my source of strength, while living in a chair. I can only imagine how much harder it would be to go through all this without the support of friends/family. It makes me very sad to think about all of things I have and lost, but recognize the fact that I still have more than some people I know. I do feel blessed to have had the twenty-four "normal," healthy years that I had. Although I've only been injured a fifth of my life, the time I spent on my feet seems like a blink of the eye, in comparison to the last five years. It is the sheer fact that I worked so hard and achieved so much, that makes it hard for me to want to just give up. A part of me feels like I have to fix the mistake and get back everything and anything I can, so that I don't feel like all my efforts were a waste of time and energy.

The few months before my accident I felt as though all the pieces of my life had finally fell into place. I had the brief luck of feeling completely at peace with my life and happy about the prospects of my future. I don't know if it would really matter as to how I cope with my paralysis, if I had never felt accomplished, happy or proud. Maybe if my life before had miserable, I'd have even less reason to keep going. Contrarily, maybe I'd have less reasons to feel so sad, because I wouldn't have lost so much. I'll never know, but I believe that it is definitely a factor in why I'm able to find strength, while others can't. It's bittersweet to having felt so close to realizing my dreams, only to have it all abruptly taken away. I think part of me feels the need to salvage what I can from my old life, because I'm still chasing after those same dreams. In away, it's like how drugs addict, perpetually chase after the sensation of their first high; although no matter what they do, they never find it. I long to feel the peace and happiness that I felt, those few months before my injury.

Reality is, most of what I had is gone and there's no way to get it back. My material possessions, like my apartment, clothes, car, etc., have all been slowly replaced with newer, more accessible versions or given away. My career is gone, but it's not from lack of trying. I was a year away from tenure, so unfortunately I had nothing to use as leverage, in terms of fighting the district's decision. Although it's painful, I can understand the choice, from a business perspective. I now require a double salary (in a sense), because of my need for an instructional aide. Knowing what I know now, I'm not sure that I'd be able to handle a full time job (physically speaking and having to relying on others to get me ready and for transportation). I've found a compromise in painting. It's not as rewarding, but at least I still feel like I'm using my degree to create art and teach a message. The forth major loss (after my functional abilities,possessions &career) I've had to face is that many of my personal relationships have gone or changed. I feel as though I've tried my best to stay connected and I remain hopeful that those relationships might mend some day. My efforts just aren't good enough for everyone and I have to restrain myself, at times, from going back time after time to work things out, only to end up hurt, again. In all, at least half of my lifetime goals are on hold indefinitely and trying to be patient, while remaining hopeful seems impossible sometimes.

Everything now is a compromise. I live in my own apartment, but with roommates (currently family). I own a car, but need someone to drive it. I create art, but I'm not working in the field I love. I crave time alone and privacy, but need help for everything. I have a dog, but can't take care of her. The list goes on an on. No matter how hard my loved ones, nurses or aides try, no one will ever to be able to do things the way I'd have done them myself (and for certain things, I'd much prefer no help at all). Not to mention, each person assisting me has their own style and quirks. My day to day life is packed full of tiny compromises. Being what most people would classify as an "A" type personality, it has been exceptionally difficult having little, to no control. I like things organized and precise. I love my privacy and freedom to travel. I have high standards on how things should be done and often over do things or get things done in advance. I used to be the queen of planning & had my life charted out and color coded. All of these character traits helped me be a successful student and teacher and allowed me to take on a heavy load of responsibilities. Now, those same traits make it difficult to deal with my need to completely rely on others. I've slowly learned to embrace the motto of taking things one day at a time and have learned to be patient. I'm much better at "going with the flow," than before and have since realized that being flexible is my key to keeping my sanity.

So many disabled people I know have the attitude of, "we can do anything able-bodied people can do, only in a different way." I understand the desire to want equality and respect for people with disabilities, but the upbeat "can do" attitude just irks me sometimes. I feel as though projecting that image of "being just like everyone else" glosses over the reality of the situation and belittles the struggles that people with disabilities face every day. I rather educate the public about the challenges I face and the obstacles that are due to my paralysis. I think acceptance comes through understanding. If society is educated about the realities of paralysis, society will A- embrace the urgent need for a cure and B- be informed enough to know what people with disabilities capabilities and necessities are. I agree that people with disabilities should have equal rights in terms of employment and that more consideration should be made to making things accessible. That said, I'm a realist. The "can doers" get on my nerves, because they often only paint half the picture and sugar coat the situation. If we (those of us with paralysis) are "just like everyone else", then why should people care about helping find a cure? It bothers me that an uneducated public might think: "If things are ok, why not focus on other issues? After all, those people living in wheelchairs don't have it so bad, right? So what is people with paralysis have to do things differently? At least they can do everything we do."

The truth of the matter is, I can't do everything most people can do and neither can the millions of other people suffering with paralysis. Yes, if we (those of us with paralysis) have the right services and support, we can still participate in many things and live full lives. If given the opportunity, we can contribute to society and be productive and certainly deserve respect. However, the reality is, that we are helpless without other people. Our minds might function just fine and we may "call the shots," but in the end, we can not do it alone. At times, I think the "can do" attitude stems from the need to want to feel included or not wanting to wound a person's sense of pride. Some times I think, maybe deep down, the "can do" attitude means that person has accepted his/her disability and has given up on a cure. Other times, I think the "can doer" uses that mind set to help himself/herself cope with all the loss, while trying not to put emphasis on all the realities of life that come along with being paralyzed. However, society needs to see the whole picture. Many people are completely clueless of what a day in the life of someone with paralysis is like. The things that often go overlooked or seem insignificant to an able-bodied person are often big ordeals and stressful for people with disabilities. Toileting is a perfect example of something that the average person doesn't think about, because for them it is a private, personal matter and even if they have insecurities, they have the option not to share them. Going to the bathroom is a basic necessity of life, so no matter how unpleasant, or embarrassing it might be, my paralysis forces me to invite other people into my very private space, in order to help me. I have no choice but to cope with the situation. Cope, or go crazy, I suppose. I've had low self esteem my entire life, so I understand the desire to want to mask flaws or perceived abnormalities. Deep down everyone wants to fit in.

The danger of always acting like a "can doer"' is that it ignores the all the reasons why paralysis is so awful and it can back fire in terms of people's quest for equality. The expression "careful what you wish for, because you might just get it," often crosses my mind. For people with disabilities to be truly "equal" to mainstream society, that would imply that we don't need any special allowances or modifications. Naturally, that is absurd. Most people mean "equal opportunity," when they refer to being equal and do not that people with disabilities should be held to the same criteria as everyone else. I see a problem with this mentality. You can't have your cake and eat it too. I agree that people with disabilities should be given equal opportunity and should be provided with what ever adaptations, modifications or assistance they need, in order for them to be able to be included or productive members of society. However, I think it's critical that the average person know why modifications are necessary in the first place. For example, the fact that I rely on someone else to get dressed, eat, get in my chair and to provide me with transportation. It's not always feasible for me to be on time and I often have to cancel plans. However, these are issues outside of my control and should not reflect poorly on me or be counted against me. Trust me, I would love to be able to hop out of bed into the shower and out the door. Reality is, I can't and while I might have been a very punctual person before, it's not always the case now. People need to be educated. The more people know about various disabilities, the easier it is to promote understanding and acceptance. If more people really knew about the nuances of paralysis and how the disability effects the individual and the extended family, there would be a much louder cry for a cure. If more people understood the challenges of living with a disability people would be more aware and sensitive towards the needs of disabled community. Think about how many times you've gone out and thought, "Why isn't the ramp over here?"; "Am I going to be able to fit a wheelchair through there?"; "How am I going to open that door?." Most people don't consider things with disabilities in mind, partly out of ignorance and party because it hasn't impacted their life.

I think it's our job (those of us living with disabilities and those of us that have loved ones with disabilities) to get out there and help people see why we are fighting for a cure. I applaud others for trying to inspire and be role modes for other people with disabilities. I think it's important that we support one another. Don't get me wrong, I'm not totally against the "can do" attitude. I'm also by no means perfect or think I'm always right. I have a ton of insecurities and vanities. Everyone can benefit from a positive message. "Can doers" offer hope and inspiration to everyone, because of what they do, despite their limitations. I suppose there are certain aspects of my life that others might say are motivational or positive. It's certainly not my goal to be a downer or negative. It is my mission to be realistic. As embarrassing as it is at times, I open myself up to the public, in hopes of raising awareness. I'm not comfortable with my current situation. I'm not looking for pity, but it doesn't offend me when people express sympathy for my situation. I don't view that as degrading; I view it as sympathetic. You know what? I'm sorry for my situation too. It is sad to think about everything I lost and it's not easy living with paralysis. Pride is useless to me. I can't think of anything about paralysis that I'm proud of. I feel satisfaction and/or accomplished at times. I don't have to try. I certainly don't have to make myself uncomfortable in hopes of helping find a cure. I do what I do because I feel a need to educate people. In fact, I think those of us with spinal cord injuries have a valuable, unique perspective to share, because we can relate to both able body people as well as disabled body people. Spinal cord injuries can happen to anyone at any time and have the potential to radically change a life in a matter of seconds. People might not seriously consider the risk of disease, especially if they are young and healthy, but no one can ignore the potential of injury. Spinal cord injuries have nothing to do with genetics, diet, race or gender; everyone is susceptible. In a way I think of raising awareness as a moral obligation, in addition to its benefits of fostering understanding and raising support for a cure.

All in all, I just wish people would be honest. Be real. Be open. Let people in and help them understand why we need a cure. The bottom line is that, no matter how happy or how well someone copes with his/her disability, I'm 99% certain that anyone would gladly trade his/her chair in exchange for a cure. No rational human being would choose dependence, sickness and obstacles over health and freedom. Put your pride aside for the greater good (even if it''s just every now and then) and help fight for a cure. The more people you touch (effect, inspire, motivate and/or educate), the more people will care. I work on coping with my situation every day. I try to make the best of my situation, but I refuse to ever accept my paralysis. I know it's my reality, for now and even perhaps until I die, but I will never accept that it's ok. It's not ok. No one should have to live like this. At the very least, everyone deserves to be healthy and I would never wish this life on someone else. That is why I say it's my responsibility to do something, even if it's small. 

iPad Review (with people with disabilities in mind)

I've had my iPad for a week now & have to say, I'm loving it! I haven't gone nuts downloading a ton of apps, but I do have a variety that I think are worth mentioning. There are a few things I'd definitely like to see in the next generation of iPads and a few flaws, that Apple could probably address with software updates.

Overall, the functionality is pretty intuitive and I can do most things that anyone else could. There are a few multi-finger gestures that I can't do, but for the most part, I've been able to navigate quite well, using my stylus. Certain functions can be done in multiple ways, for example, you can enlarge or shrink pages by pinching and pulling at the corners or you can double tap. I have noticed that the iPad is very particular and is programed to sense tiny differences in movement, pressure and the duration of your finger or stylus is on the screen. Because it is so sensitive, it does seem to work more accurately and consistently with fingers, versus the stylus. There have been many times that I've been using it and I have to try to push the same area two or three times, before I get it just right. It can be annoying at times. I think the easiest solution would be, for Apple to design a capacitive stylus with a more precise tip. All of the capacitive styluses that I've come across (including the Pogo that I'm using) have a thick tip, about the circumference of a pencil eraser. If they could somehow narrow the tip to a point, it would make it easier to be accurate.

As far as accessibility to goes, I really think Apple should include some sort of override setting for the stylus. It would solve the problem of not being able to do multi-finger gestures and it would help the iPad to recognize the difference between stylus and fingers. I haven't tried the Voice option yet, but the ability to change font size and adjust the volume and brightness, in the settings menu is helpful. I'm very pleased that there aren't many external buttons. The only other "problem" I've come across in concerns of accessibility is that, some apps rely on movement and/or do not self adjust the orientation. In terms of being accessible, Apple should consider the fact that many people with disabilities cannot pick up, or move the iPadthemselves. I realize that there are only a small amount of iPad users with this unique problem, however, it is a concern to those of us dealing with paralysis and motor skill deficiencies. It's a minor issue that could most likely be easily resolved by giving users the option of shutting of kinetic features and/or individual apps could give users alternative means of controlling the device. 

The iPad technically, has no "correct" orientation, and is supposed to adjust itself based on the movement of the iPad itself. You can choose to lock the orientation if you wish, however some apps (mostly games) rely on kinetics, such as Nintendo Wii. In the game Sims3, for example, you need to shake the iPad as part of earning cooking skills. Since I can't shake, or handle my iPad, I'm destined for virtual cooking failure. It would be simple for creators to allow tapping as an alternative; just as lazy people have the choice to play their Wii from the couch. Kinetic gaming features are cool, but I don't see any justification for them being absolutely necessary. Many of the current apps already allow for customization, so I don't see why Apple couldn't make the kinetic features optional.

A lot of the iPad apps are iPhone apps that Apple has tweaked for use with the iPad. The one glitch I've encountered in several apps, is that they are only setup to work in the "portrait" position. This means, you're forced to use the iPad vertically, and depending on how you have to position the iPadin order to use it, vertical might not be the most convenient orientation. I for one, use my iPad in the horizontal orientation, because the height is shorter than the width, thus making it easier for me to reach/touch the entire surface.The current apps that only work vertically, could easily provide updates to rectify the issue. Some of the TV sites like, ABC, TLC and Discovery Channel do not (yet) automatically self adjust, or the home page is vertical, while the videos can be watched in either portrait or landscape. I'm hoping more apps will update the iPad apps to work in both orientations. I find it ironic that there are (at times) unnecessary kinetic features embedded into games and yet, apps that should respond to movement, to auto-correct the orientation of the iPad don't always work. 

My only other complaint is the inability to view or use anything to do with Flash. I think this is a big mistake, as tons of very popular websites use Flash and aren't accessible on the iPad. No Flash means only having a limited access to the web; which stinks. I'll be using my iPad primarily from home, so I rely on my existing wireless network for internet access. However, I'd be ticked off if I was one of the thousands of people that are paying extra for 3G (access on the go) service. I can't see paying full price for internet services, if you don't have full access. Some of my favorite sites rely on Flash, like HULU and Facebook games (like Zynga and Slide games). You can also forget about playing huge multi-player games, like World ofWarcraft and Maple Story. I can't even access the social section of my own website, because it uses Flash. If I really want/need to access Flash websites, I can switch off to my laptop. Apple would like you to think that the iPad is a smaller, more convenient version of a laptop PC, but that isn't true. The iPad has the potential to replace traditional laptops in the future, but currently, there are too many missing capabilities to make the switch from a PC to iPad alone. Right now, iPad's capabilities are stuck in between the versatility of a PC and the limitations of specialized mobile gadgets, like e-books. That said, the things the iPad CAN do are pretty sweet!

Two of the best features of the iPad are it's compact size (smaller than the average magazine) and its full touchscreen. The iPad is definitely easier to lug around than a laptop, and easier to read, and operate than smart phones. My dad is always complaining about the ever shrinking size of electronic gadgets; he says, "they're designed for Leprechauns." I know myself, that trying to use my cell phone or other electronic devices are difficult to use, because of my limited mobility. I no longer have the dexterity or fine motor skills required to push buttons that are a quarter inch in size. I'm sure many people with disabilities, and the elderly, find it frustrating, not being able to read or accurately press buttons. The iPad is great, because it allows for customization. You can increase the size and type of font of text and easily zoom the screen in and out, which makes for much easier reading. The lack of buttons is also a plus. The touch screen is far easier to operate than pushing keys or having to scroll and select things with a mouse. If I want to type on a PC, using Microsoft's on-screen keyboard, I have to use mouse to select and press each key. The process is so tedious that it's not worth it for me to use. My iPad's on-screen keyboard is huge and I touch each key directly, as if I were using a traditional keyboard. Being able to type laying down gives me more time in the day to write, answer emails and surf the web. Before I owned the iPad, I was limited to only typing if I was sitting and only being able to use the mouse, if I were laying down. Now, I have more options to how I spend my day, because I have extra time to write. 

The other great features of the iPad are: e-reader, social networking, productivity, gaming, music, videos and creativity. Even though there are limitations to surfing the web, it's great to be able to check e-mails and keep up with social networking sites, like Twitter and Facebook. The e-reader feature is awesome, and has all the best qualities of the top three competitors. iPad gives users the freedom to download and purchase books from a variety of sources, so you can shop around for deals and freebies. The fact that it has a full color touchscreen, makes it feel more like you're reading an actual book or magazine. The advantage is, you can store thousands of books into it's small size, customize the font and look up words, with it's built in dictionary and search features. Not to mention, for someone like me, that has to turn pages with a stick and has an elaborate set-up (tables and book stands), every time I want to read, the e-books are a godsent. My iPad has taken out all the stress that comes along with reading and made me more motivated to want to read. 

If you get tired of reading, there are tons of fun games, which are all operated by touch, similar to the Nintendo DS. You can also save space withiTunes, since you can store tons of your CDs and movies. It's pretty amazing how much stuff you can carry around in such a small device. There's also lots of great productivity apps, that give you the ability to work on the go, manage/organize information and jot down ideas. One of my favorite apps is Sketchbook Pro, which lets me create art. I haven't had the freedom to sketch in a long time. For me, the annoyance of having to ask for help every two seconds, (for an eraser or changing colors) takes away the enjoyment of drawing. The iPad sketch book gives me the freedom to switch colors and textures, as well as to make corrections on my own. It's amazing how well the program simulates different mediums and it gives you the ability to create work in layers. I'd say it's a must have for any artist.

I realize the iPad is a bit pricey, for the average middle class person. The good news is that it does come in several versions; the cheapest runs around $500. If you already own a smart phone, you might want to wait and see what (if any) changes they make to the next generation of iPads. The originaliPad is sure to drop in price as newer versions get released. If you don't own a laptop or a smart phone, you really should take a trip the Apple store and check out the iPad. Also, if you're thinking about investing in an e-reader, it's well worth the extra $100-200, considering everything the iPad can do. I'd highly recommend the iPad for people with disabilities, especially those people that enjoy reading and/or writing. It can take the place of bulkier, assistive devices, that aren't as versatile or easy to use. Plus, the iPad gives the user freedom to switch between tasks independently. I'm always grateful to have anything that gives me back a sense of freedom or independence.

iPad

I'm currently writing from my new iPad. I'm getting used to how to use it & how much pressure is needed to access features. Right now we have it rigged on a book stand & bed table. It's harder for me to press the top two corners than it is for the rest of the surface. I bought a generic capacitive stylus (Pogo brand), since Apple doesn't have one (yet) for the iPad. I ended up going to the Apple store to try out the stylus, before I ordered one. While doing my research on the device, I couldn't find any mention of being able to use a stylus.

Initially, I called Apple to speak with one of their "geniuses" about the probability of me being able to use the iPad with my mouth stick & possibly the iTouch stylus. The woman I spoke with said that most likely the iPhone/iTouch stylus wouldn't work because of the amount of sensors used in the iPad surface. Luckily, my brother in law is a tech wiz & encouraged me to try any old capacitive stylus. As the name suggests, capacitive styluses (do I need to pluralize that word?) some how mimic our fingers by altering the electric current on the touch screen surface. Other touch screens, like on Nintendo DS, respond to pressure, so you can use your fingers or almost any inanimate object. After reading a couple of articles my bro sent me, which even showed people using sausages to control their iPhones (I'm not kidding), I figured it was worth trying.

As some of you know, I've been looking into getting an e-reader for some time now. I'd read tons of reviews on Kindle, Sony Reader & the Nook, and was leaning towards the Kindle, when I first heard about the iPad. The more I read about the iPad, it seemed like the perfect choice. It already has all the positive features of the three e-readers (audio book capability, built in dictionary, limited web access, touch screen & the ability to share information) plus it can do a host of other things, that none of the e-readers can. Granted, the iPad is more expensive, but I think the versatility of applications justifies the added cost.

The iPad is not (yet) a replacement to a laptop, because it doesn't support Flash (program that online games, like Farmville & a lot of websites use), has limited multitasking capabilities and has no webcam. That said, the amount of things it can do is pretty impressive. I'm limited to what I can do o a laptop, because I have to use a mouth stick to hit the keys & control the trackball. The full touch screen of the iPad allows me to do a lot of things laying down, that normally require me to sit. Just being able to type laying in bed is amazing. I so often have ideas or things I'd like to say, but can't because I'm stuck in bed. I hardly ever have enough time in the day to write. I have to prioritize my time sitting up, so that I can be productive. Once I've answered all my e-mails & paid bills, there's little time (or desire) to write for fun.

Hopefully, I'll be posting blogs more frequently, now that I can write in bed. I'll write a more detailed review on my iPad, after I've used it for a few weeks.


-- Post From My iPad

Going Out

As many of you know, I don't go out much these days. I basically stay inside all winter, as it's near impossible for me to withstand the cold weather. I'm usually colder than everyone to begin with, so even with the heat on at a normal level, I'm shivering. My inability to move around and poor circulation make it very hard to warm up. Unless it's something very important, I try to avoid making plans with friends that require me to leave my apartment. Luckily, there's plenty of holidays and birthdays to keep me busy. Every year it seems to get a bit harder to meet up with friends, due to the fact that almost all my friends are married and/or have children. Although, I'm grateful that my friends make the effort to visit me, given everyone's hectic schedules. I have a reasonable excuse for staying indoors during the winter; it's the rest of the year that I struggle and to force myself to go out.

Before my accident, I was on the go non stop. I spent a great deal of time in my car and juggled a lot of responsibilities, in addition to hanging out with friends and family. Spring 2005 was probably the most hectic time in my life. I was always pressed for time, but none the less very happy. At the time, I had my full time teaching career, my apartment, traveled back and forth to PA (to visit friends and boyfriend) almost every weekend, put on three art shows for my students, joined a gym, was attending bar tending school, and taking a graduate course. I still managed to go out and enjoy my free time and genuinely looked forward to spending time with my friends and family (especially my boyfriend). I loved to shop. Even when my down time was scarce, I'd hit the mall and do a little shopping. I never ran short on reasons to buy new clothes! Despite all my spending, I was responsible with my finances and had no debt. I just enjoyed giving gifts and having new things. I was not married and had no children and was making a good salary, so I had no regrets treating myself. I'd have to say, I hit the mall about once a week. Buying clothes was my all time favorite thing to do at the mall. I enjoyed seeing all the latest fashions and had fun trying on clothes. It was always fun and exciting for me to have new things to wear.

I was comfortable with going out by myself, but I preferred being with friends (or boyfriend) most of the time. I'm a people person. Crowds never bothered me, in fact I kind of liked the hustle and bustle of the city. The more people there are, the more interesting things there were to see. I used to go to Manhattan regularly during my college years, for assignments. I could spend the entire day just seeing the sites and watching other people. I loved the diversity of the city and the fast paced nature of the people. Even simple things, like taking the subway, were interesting and fun for me. I could spent hours wandering around the museums. It didn't seem to matter how often I went; there was always something new to see and favorite areas to explore.

I've always enjoyed dancing. I missed out on parties and dancing during my college years (due in part to an ex-boyfriend). I say "missed out" because there were many opportunities and invites to go out that I turned down. I would've loved to be more social in college, but my choice to be with my boyfriend (during college) kept me from going. The positives to staying at home more were having good grades and tremendous focus. However, once I was single again, I found a sense of freedom and exilleration that I had been missing. I went to clubs and bars occasionally on the weekends and had fun dressing up and letting loose. Hanging out with some of my friends required along drive, but it was worth it. Dancing was a perfect stress relief and I had a lot of laughs with my friends. I was usually up for doing almost anything and perferred to go out versus staying at home. Apart from shopping and going dancing, I enjoyed seeing all of the latest movies and spent a lot of time eating out.

I've always piled a lot of responsibilities on my plate, but somehow managed to balance everything fine. I was rather good at time management and being organized, which made it possible to have a life outside of career. When I was still living with my parents, I can remember them getting annoyed at the fact that I was hardly ever around. They felt I treated home as a hotel, and only stopped by to sleep and shower. For the most part, they were right. I've been on the go almost my whole life, bouncing back and forth between divorced parents. I had moved out once, before I had my own apartment. Moving back wit my parents after having lived independently felt awkward and suffocating. I didn't waste much time planning on getting my place. It's not that I have anything against my parents, I just prefer to be free andindependent. I liked the feeling of not having to depend on anyone and the freedom to come and go as I pleased.

The thing my parents didn't realize was how many extra hours I stayed at work, or how many projects I was working on. I was usually the first teacher to arrive, and the last to leave. I never minded putting in extra time, because I loved my job. I was never asked to do a lot of the extra things I did, but they were important to me, and I was happy to sacrifice my time. I wanted my classroom to run a certain way and I wanted to be flexible in helping with responsibilities around school. The year of my accident I put on three art shows, worked on two murals and ran the yearbook club. I attended school even and maintained an ever changing display of my students' work. I don't think anyone in my life (apart from my boyfriend) realized exactly how much I was balancing at the time. I was stressed out, but I was also very proud of my achievements and was happy with my life.

As you can imagine, my life changed drastically after my injury and there are countless aspects of my "old life," that I've lost, or no longer enjoy. My desire (or lack there of) to go out is a perfect example of how my injury has had an impact on my life. Since my accident, the thought of going out is comparable to having a root canal; something you have to do, despite the pain. My apartment has become a safe haven for me, where it is easier to cope with my situation. I have more control over what I let in and it's easier to block things out. In the nursing home I had no peace. I wasn't happy at "home" and I was scared to go out. My computer was my only window to the world and even that was bittersweet. Everything I see reminds me of what I had, what I have and what I want. Every good memory has become painful, to some degree. Every time I leave the security of my apartment I risk being bombarded by reminders of my past and feelings of jealousy, shame and regret over what I lost. I can't help but compare myself to all the people I see. I can't help but feel embarrassed by the help I need and jealous of all the things I see other people doing.

I force myself to go out, because I feel like it's the right thing to do. I have been given opportunities to help other people in my situation through my artwork and I feel obligated to do what I can. I know it's not healthy for anyone to be a hermit. We (humanity) all need to socialize and share experiences with other people. I realize that the only way to keep my friends is to be a part of their lives and contribute what I can to my relationships with them. My grandma sometimes gets sad when her friends tell her about all the wonderful things their grandkids are doing. I understand the resentment she sometimes feels, because I know how hard it is for me to feel happy for other people, while I'm feeling miserable about myself. It's those times that I remind her (and myself) that the world is not gong to stop, just because I got hurt and that friendship is about give and take. Yes, it sucks that I'm paralyzed, but my situation shouldn't over shadow everyone else's happiness. I can''t expect people to mope around over what happened to me, nor do I want them too. I try to put my sadness aside and be happy for my friends, because I realize that everything is not about me. I can't expect anyone to want to be around me, if all I ever do is cry, complain and focus on the negative. I often do things that make me uncomfortable for the sake of my friends and family. If I gave in to my emotions and refused to hangout because I didn't feel up to it, I'd never go anywhere. I could easily isolate myself within a bubble and eventually people would stop inviting me and making an effort to include me. I wouldn't blame them.

My aides, nurses, family and friends all encourage me to go out more than I do. It's not to say that I get no enjoyment from going out; it's just that every experience comes with it's own level of sadness, embarrassment or anger. I try to balance pros and cons in my mind before I decide what to do. There are just certain things that are so uncomfortable that the small amount of fun or excitement I might have is greatly out weighed by my discomfort. Events like weddings and baby showers are outings that rank high on my discomfort list. Therefor, I avoid them, unless the people involved are extremely important to me and worth the inner turmoil. A perfect example of this would be my best friend's wedding. Not only did I attend the wedding, but I had to face multiple fears and tackle new experiences. It was my first time traveling by airplane after my accident. It was my first time to Florida, since my accident. It was also the first time I had to spend a night away from home, since my accident. The trip came with a lot of emotional discomfort, stress and anxiety. I put my feelings aside and committed myself to going, because I knew how important it was to my friends (bride & groom). They had both made a lot of sacrifices for me and supported me more than anyone, the first year after my accident. I refused to let my situation be an excuse and met the challenge head on, for the sake of my friends. There are times when I feel like the outcome is more important than my personal feelings and that I'd be selfish to not participate. I try to remind myself of the bigger picture. If I can give something back to those that are constantly giving to me, I put my feelings aside. If I feel like I can help others by letting people into my comfort zone, I do it.

I think it's easy for people to forget or make light of how different everything is for me. I think it's hard for people close to me to understand why I seldom go out. They compare me to the "old Christina," that was super outgoing and always on the run . That Christina no longer exists. My accident has changed the way I see the world and my desires to interact within it. It's often the activities I used to love the most that now bother me the most. The average, some times mundane things can be stressful and not worth doing for me. Things like going to the mall, grocery shopping, doctor visits, hanging out with friends and going out to eat are common activities that most people take for granted, because they don't have all the extra concerns that I do. In some aspects, I know I can't expect people to understand things from my perspective, because they haven't lived it and often don't know enough about paralysis to consider it.

Every time I leave my apartment I have a long list of things to worry about. Not to mention the fact that I can not just pick up go, on a whim, like before. I can't just pop in my car and go. I need help getting ready. I need special equipment and a modified car (ideally) to help transport me. I always have stress and worry over my catheter and the possibility of incontinence. I also have to consider who can accompany me, or help me at my destination. I have to consider accessibility; whether or not there will there be stairs where I'm going. If so, I have to find an alternate entrance, ramp or elevator. There are places that I can no longer go, because of my limitations. Climbing to the top of the Statue of Liberty comes to mind and luckily I have no interest in doing that. However, even places that claim accessibility are often clueless and poorly suited for wheelchairs.

The average person over looks things like curbs, doors, and the dimensions of most things. I don't have the luxury of ignoring small obstacles, like curbs. Dining out also has the added stress of having to be fed (like a baby) in front of countless strangers and most tables at restaurants are either too high or too low to sit close to everyone else. I find shopping a headache, because most stores cram too much stuff into a space and it makes it near impossible to navigate a wheelchair, without knocking things over, crashing into people (who tend to be oblivious to presence wheelchairs) or access areas all together. Try wheeling around Claire's if you don't believe me, or 90% of women's clothing stores. These days, I much rather shop online than go out. Seeing all the cute things I can't wear, like shorts, skirts, bikinis and high heeled shoes, just irks me and the fact that I can't try anything on takes out all the fun for me. Many of my friends in chairs make light of things and are less sensitive and have the mind set that people in chairs can do everything, just in a different way. While there is some truth to that way of thinking, there is also the reality that there are things that people that can not walk, just can't do. Personally, I put quality before quantity and recognize the fact that no matter what I "do" it will be a compromise. I refuse to put myself through discomfort unless I feel the outcome is worth it, or because I have no choice. Everyone deals with paralysis differently and their personality and life before paralysis plays a big role in their life with paralysis. I think it's important to recognize everyone as an individual and realize that every person's coping skills are different.