Blog Hiatus

I'm sure many of my blog readers have been wondering why I haven't posted any new blogs in over a month. It is because I was busy focusing my energy of finishing my autobiography. It is a project I started shortly after my accident, but kept hitting mental roadblocks and perpetually procrastinated on getting it done.

One of the biggest obstacles was my physical limitations and not being patient enough to work with dictation software. When I still lived at Cheshire I was limited to pecking away on my keyboard with my mouth-stick. I was a lighting fast typer when I could use my hands (never had to look at the keys) and can type surprising fast with my mouth-stick. The task just became tedious. A couple of the other residents highly recommended I buy the dictation software, "Dragon Naturally Speaking" and many of them used it regularly. I felt foolish speaking to the computer, and hated the fact I never had privacy and would have inevitably be overheard by roommates. At that point I decided against wasting the money, and kept on pecking away at the project.

For whatever reason, I only ever seemed to get the first thirty or so pages written. I kept hitting mental roadblocks whenever I tried recalling my time at Kessler. Honestly, I think I was so stressed out by the immediate issues, of being sleep deprived, stuck in a nursing home and dealing with the high stress level of each day, that I couldn't delve into the haunting memories and difficult experiences of my stay at Kessler. If anything, I wanted to run far away from those memories and much preferred to escape my miserable reality, through reading books, watching anime, spending time with friends and vegging out on video games.

After a while, I just stopped trying. I put the project on the back burner and focused my writing on current, day to day things. I used my MySpace blog as an outlet to vent my daily frustrations and every day struggles. When things became unbearable, and I hit my breaking point I switched gears and focused all my time and energy on getting myself out of Cheshire and into my own place. It took six long months of relentless researching, planning, pleading and begging, but I did it.

Once I was home I tried a few times to pick the book project up again, but would constantly spend all my time re-reading and re-editing; never making progress. I started focusing a lot of energy into painting, instead of writing and worked hard to build up a body of work worth exhibiting. I wrote about my artwork, as the book started to collect virtual dust, again. I was limited to the time I was able to be up in my chair, so I had to prioritize how best to spend that time, since it was when I could be most productive. I made the choice to paint and remained focused on that.

The book was always lingering in the back of mind. It bothered me, having it unresolved and unfinished. It wasn't like me to give up on anything I started. I caved in and bought the Dragon dictation software, hoping I could use it to be productive during my time in bed. I figured instead of playing my Nintendo DS, reading, or watching TV, I could begin putting my thoughts down and use my evening hours to write. I still felt silly speaking to the computer, but felt a little better knowing at least I had privacy. The software was glitchy and I didn't have the patience to do the training exercises. It ended up being more irksome than handy, and yet again I abandoned the project.

This past April my ex-boyfriend Jimmy resurfaced into my life. He knew I was struggling, and was at my wits end, with everything. He wanted to know how he could help me. I instantly knew that THIS was my opportunity to dust off my book file, and tackle the project once and for all. He was happy with the idea and we decided to begin working on it right away. I just knew that having HIM help me, would give me the accountability of meeting deadlines and the fact that it was OUR project gave me the focus and motivation I needed. I felt like deep inside there was so much I wanted to say, so much I wanted to share. I believed my story has the potential to help others and I felt like it would give Jimmy and I some much needed closure and mutual understanding. Although he'd remained in and out of my life over the last six years, there was a lot of things he missed out on. Out of all the people in my life, it was important to me that he understands my WHOLE experience with paralysis; from start to finish. I wanted him to understand my suffering and hope that having completed the project together it will put everything into perspective for him, and for us.

At first it was really challenging, just laying out the structure for the book and putting together a game plan. It had been so long since I had really thought about the dark days of Kessler and my time at Cheshire. I knew writing the book would open up a lot of old scars, but I felt ready and able to handle it. Luckily, for a large majority of my time post accident, I have kept blogs, or journals. I was grateful to have those entries to use as a reference, to try and create outlines of what I wanted to say in each chapter, and to put everything in chronological order, and to attempt to maintain a coherent flow, without too much repetition. If my memories were fuzzy, or I had gaps in my records I turned to family and friends to double check my facts, and to piece it all together.

Jimmy would come down to NJ (from PA) about once a week, or every other week and he would help me type huge chunks of chapters. I tried my best to write a little every day. Having my iPad was a tremendous help. As my health had declined, further and further my time sitting up has progressively decreased. Thankfully, I can write on my iPad laying flat in bed. It allowed me to keep up a fast momentum. Every so often, throughout the day or night I would write a few paragraphs. I tried to save the emotional parts about my relationship as my own personal project and forced myself to get those parts finished, between our visits.

The first third of the book was emotionally the hardest, but having Jimmy's support helped me stay focused and kept me on task. The last third of the book was the easiest part to write, because it focuses on the most current events in my life and my present day thoughts, opinions and struggles. I ended up writing middle portion of the book last, since I had the least amount of reference material to go off of. It took me a while, to interview friends and family and get the outlines finished. Once the outlines were completed, I just worked on checking off each topic from each list, until it was finished.

That said, from start to finish, it took me the past four and a half months of intensive writing to get the entire story down on paper. It's twenty one chapters long and over 250 pages. It was a monumental task, but I did it. I couldn't have done it without Jimmy and am eternally grateful for his assistance, in helping me realize my goal. The hardest part is over. I've said everything I want to say, and truly believe that he and I were meant to do this project together. For so long, we've both struggled over trying to make sense over why we met, and had such a wonderful, loving relationship, only to see our dreams get shattered and torn apart. This is not the life either of us wanted, or planned, but this book is something that we were able to turn our pain and tragedy into something good, and helpful; that hopefully will benefit others and inspire people to support research and change their perspectives on life and death. It will be our legacy and something that can continue to help, and inspire others to enact change, even once we're long gone. That feels good.

Right now I've been working with a couple of editors and trying to determine how much it will cost to get the book professionally edited. I've gotten some great feedback, but it's going to take a substantial (between $2,000-5,000) amount of money to get the job done right. I'm waiting to hear back from lawyer, to see if this is something I can use my trust for. We shall see. Honestly, I think it should be permissible, because it's definitely an expense that will go towards improving the quality of my life and hopefully that of many others. Once I get the editing logistics/fees ironed out and the book is edited and ready for publication, I plan to use lulu.com to covert the book into e-book (aka paperless) format. Once it's published it will be available to purchase through Apple's iBook app (on iPad), through Barnes and Noble's Nook and Nook Color and hopefully through Amazon's Kindle.

I'm super stressed, waiting to hear back from both editors with quotes and timelines. I'm even more stressed at how much it might cost me. I'm anxiously awaiting my lawyers input (and hopefully his approval). As soon as I have those answers, I'll know what is the best way to proceed. Either way, I have faith it WILL get published soon (within the next few months at the latest). I'm thrilled about it and can't wait to share my story (my WHOLE story) with the world. I look forward to hearing reader feedback! I'll keep everyone up to date on the progress and definitely inform you all once it's actually for sale. I'm so close, and very proud of myself. I hope readers will enjoy it, and that it will open some hearts and minds.



- Posted using BlogPress from my iPad

Life Is Unpredictable & Full Of Irony

Today marked the six year "anniversary" of my accident. It's certainly not an anniversary worth celebrating, but one that is impossible to ever forget, or ignore. This year brought with it a twist of surprise, and added sentimental value. Six years ago, one simple mistake, would change my life forever. If my accident has taught me anything, it is how very unpredictable life can be.

This year, marks the first completion of the weekly cycle. Meaning, this is the first year, since my accident, where the date, and day it falls on, is the same as on my accident. My accident happened in the very early hours, of Sunday, June 5th, 2005. This year, June 5th, also landed on a Sunday. Last night, I couldn't help but feel an added twinge of grief, as I replayed the memories of that "fateful" Saturday night, where my life got flipped upside down. To this day, I'm unsure of the precise time of my accident, but know the first hours of that Sunday, were spent in the Emergency room, terrified of what was happening, and in shock of what I'd done. That weekend, my last hours on my feet, and my first few hours paralyzed, will forever be etched into my mind. It is a day I wish I could scrub from memory.

Ever since the moment my neck snapped, I have been replaying those last few memories, on my feet, in my head, and fantasizing how different my life might be, if I had never gone to that party, never drunk, or never dove. I have reviewed, replayed, relived, analyzed, questioned, and scrutinized every second, of that final day on my feet. I have beat myself up, and find it hard to be forgiving, to myself, for my foolish actions. I have wondered, "What if..." to a million different scenarios, and have searched in vain for reasons, or self explanations, for why I chose to do, what I did. The lists go on, and on: we should've never gone to that party, I should've never drank, I should've had more to eat, I should've waited to go swimming, I should've used the ladder, I should've never dove. Each action, seems more stupid, worse and irresponsible than the one before it. The truth is, there are no reasons, or good explanations, and even if there were, it wouldn't change the outcome.

Although I never intended to do harm to myself, or anyone, my actions that day, have caused me, and my loved ones a tremendous amount of pain and grief. The combination of many common mistakes, resulted in a gigantic disaster. One moment I was happily, enjoying a self sufficient adult life, the next I was crippled beyond saving. I went from having everything I wanted, to my worst nightmare, overnight. While my life has been the most permanently effected, my accident has had a rippling effect, on everyone that was closest to me, at the time of the accident.

My accident created a horrible strain on my relationships, with many of the people I love. The sheer magnitude of loss, the fear of the uncertain, and the reality of the irreversible nature of my injury, effected everyone I love. The Christina I was, died the day of my accident, and it's been a very bumpy rode, living a completely new reality, being a completely new person. My accident has changed the way I can interact with the people I love, and has forced limitations on what I can do, and how much of a role I can play, in the lives of my family and friends. I've had to come to terms with my new life, and they've had to come to terms with the new me.

My family and friends have at times been my biggest obstacle, while at other times my biggest supporters. I have had many fights, falling outs, and disagreements, with the people closest to me. Thankfully, most of my relationships have stood the test of time, and have whethered this storm, called paralysis. Most of my loved ones have stayed right along side me, through laughs and tears, through thick and through thin. Although they might not all get along with one another, or see eye to eye, they have put aside their differences and rallied behind me. I am so grateful for my family and friends. I feel so blessed, to have so many people that love, and support me.

The rode has been especially difficult, these last couple of years, and I know for sure, I'd be long dead, if it were not for the many loving hands and hearts, that prop me up, and give me strength. There are a few people, that I have lost through this all, and for them, all I can say is sorry. I wish I knew a way to fix my mistakes, or how to repay them. It makes me sad, to think I am missing out, on being a part of their lives, and vice versa. All I can do, is try my best, with whatever time I have left.

2,190 days ago, I thought by now I'd be married to Jimmy, we'd have a couple of kids and I'd be a veteran teacher. I never thought for a moment, that life could throw me a curve ball, or that life would not fall into place, like I had planned. I thought I'd be healthy, and able to care for myself, until I was old and grey. The future seemed brighter than ever, and full of a million possibilities. I was the happiest I had ever been.

2,191 days ago, my entire life was crumbling in front of me, and my future was terrifyingly uncertain. I was newly paralyzed. I was vulnerable and scared. I was in and out of consciousness, and on the verge of death. I knew I might lose everything. I was in tremendous pain, and utter shock. I couldn't imagine a worse situation, a worse moment. I prayed with all my being, that somehow things would be ok. My loved ones were fighting, blaming, and fracturing. I didn't know who to turn to, or what to do.

Today, was not how ever imagined it to be; not during my best, or worst days. I spent the day with Jimmy, my exboyfriend. It was bittersweet, and strangely ironic, spending today with him. It was a mix of extreme high, and extreme low emotions, for both of us, as we remembered a day that changed both our lives, forever. Although we are no longer together, we will always love each other, and share a special bond. He is still one of my closest, dearest friends, with whom I feel I can be most open. He is the one that saved my life, that night, and pulled me from the water. Even though we split (romantically) months after my accident, we have been perpetually drawn back to one another, over these past six years. My accident has changed us both in profound ways, but despite everything, we share a bond, unlike any other.

Six years ago, I had bought him a birthday cake, that we had planned to share together, that coming Monday (6/6/2005), in celebration of his twenty third birthday. Those plans, like so many others, were ruined, and never came to fruition, because of my accident. I have always felt like my accident stained his birthday, with such a horrible memory. I have always wished things could've turned out differently for us, and that we would be able to share a happy memory, for his birthday. Today that wish came true.

Although today was not the ideal day, of how I wished to be spending Jimmy's birthday, I was thankful nonetheless. I feel blessed to have him back in my life, even if it's just as friends. Of course, I'll always wish for more; for both of us. However, I've come to accept my reality, for what it is, and know no amount of wishing can make it be, what I want it to be. I tried my best to enjoy our time together, despite my longings, and limitations. I tried to savor what I could, and be glad to have sitting beside me.

I don't know what the future holds for me, for Jimmy, or "us" for that matter. I gave up trying to predict the future a long time ago. All I know is that, despite my cold sweats, and relentless chills, I was able to have a few laughs, and enjoy seeing his smile. It felt good, taking a bite into a piece of his birthday cake, and for as much as it stung, to not be able to do everything I wished we could be doing, I am so glad we spent today together. Today was a day of closure, and an opportunity to create a positive memory. I hope we can make a few more happy memories together, before this life is over.


- Posted using BlogPress from my iPad

Meeting With Fr. Doug

Well, I just met with Fr. Doug. He was very nice, and younger than I imagined. Most of the priests I knew growing up, were easily old enough to be my grandfather, or great great grandfather. We talked for about an hour and a half. I explained pretty much everything I've been thinking, and going through; lots and lots of tears. I showed him some of my still life paintings, I had laying around the apartment and gave him my card, to check out my website.

He said he could see a definite reason why God wanted me here, to use my gifts, to help others. I brought up the fact, that I feel I have been generous, and giving, but wonder how long I'm meant to keep living for the sake of others. I said, it's unfair, to hold me to the standard of Jesus, when Jesus had a clear knowledge, of his purpose, about his death, and about his resurrection. He said that's true, but that life isn't always fair. I explained that I don't blame God, for my accident, because I feel it is a product of my own freewill. He agreed, and said, although God doesn't create suffering, he can make good things happen, despite of it.

I understand, that I've been blessed with gifts, despite my severe disabilities. My gifts, of writing, and painting have helped me to cope, and teach others, about paralysis. However, the daily bouts of autonomic dysreflexia, and the grueling treatments, and degrading, embarrassing nature, of being totally dependent, makes living this way, seem so overwhelming, and often overshadows, the few positives in my life. I am thankful, to be able to express my feelings, but sometimes feel like my mind itself, is my own worst enemy. Being so trapped, with nothing but my thoughts, is often a punishment, within itself, because I'm constantly remembering what I had, what I can't have, what I miss, and what I want. The disparity between my old life, and my reality, is constantly weighing down on me, and makes it hard to be satisfied with what I've been left with.

He said I seemed to be much harder on myself, than others, and said I needed to find a way to forgive myself, for the accident. He said I had to start loving myself. I have heard those words many times, but am at a loss, at how to begin to do that. He said we're often much nicer to others, than we are to ourselves, and in my case, that's certainly true. He said God, is also more forgiving than I am, which I'm hoping is true. I know I didn't intend to hurt myself, but it was MY poor judgment, and MY action, that ultimately resulted in my injury. In many ways, I feel like a murder. I feel like the person I was, died that day, and I've been grieving for her, ever since. Paralysis has stolen almost every aspect of my old life; a life a loved.

I have lost my freedom to care for myself, my privacy, my dignity, my hopes, my dreams, my career, and the life I had built for myself. In many, many ways I lost myself. I miss the old Christina. I miss living my old life. I have no to blame, for the life paralysis had given me, but myself. How do you forgive someone that has stolen everything you loved, and held dear? How do you forgive someone that has robbed you of your health, and in turn, sentenced you, to a life a suffering? How do you forgive someone, that has robbed you of your potential, and your dreams, for the future, by placing extreme obstacles, and limitations upon you? I'm not sure if I CAN forgive myself.

Talking with Fr. Doug, did help provide me comfort, in that he said I had the right, to refuse extreme measures, like a tracheotomy, colostomy, or vent. Although, deep down, he's just a man, I felt relieved of the heavy burden, of knowing he (as a Catholic priest) recognized, that some situations are TOO much, and that God would understand, not wanting to preserve "life" to ANY and ALL extent necessary. Ever since those first few weeks, in ICU, my worst fear, has been ever having to be hooked up to a vent, again. I have a hard enough time, dealing with being reliant on people, I don't want to ever be reliant on machines again.

Fr. Doug said he thought a lot of my feelings, and dark thoughts are just depression, and suggested I reevaluate my medications. I said, I'd be open to trying. I already have tried a few. I had been taking Effexor, up until last year, and felt like it was no longer working. I asked my doctor, if I could try something different, and I started Pristiq. I've been taking it for at least six months. In the past six months, I've also added Remeron, and Xanax at night (both have been increased in doses a couple of times), to help with my insomnia. That said, I'm as down as ever, and in a very dark place.

I get a little annoyed, when people just write my feelings off as depressed, because I feel the true root of my sadness, stems directly from my paralysis. I'm not saying I'm not depressed, because I clearly am. I'm just saying that, no matter what medication I take, I will ALWAYS have a certain degree of depression. I pointed out, that anti-depressants, are not going to take away the key problems, that are plaguing me: the daily bouts of AD, my physical limitations, bowel program, or my catheter. I suppose, the right medication COULD make dealing with these things more bearable, but on a whole, I honestly can't envision ever being happy, or satisfied with living the way paralysis forces me to live.

After our long talk, Fr. Doug performed the anointing of sick ritual, and we said the "Our Father" together. I hope God was listening, and can offer me some relief, one way, or the other. In the meantime, I'll take Fr. Doug's advice, and talk to my doctor, about possibly trying to change my medications. At this point, I feel I have nothing to lose. I don't want to seem unreasonable, or unwilling to take suggestions. If I didn't want help, I wouldn't bother asking. I just want some peace, and to feel better, for a change. I do wish God would just cure me, or take me. I hate feeling stuck, in constant limbo.

Our conversation, hasn't really changed my mind, about not wanting antibiotics. I feel like, if God truly does want me alive, God certainly has the power to keep me alive, despite that decision. For now, I'm willing to experiment, and see if new meds, can offer any relief. I will also continue to pray, meditate, read, and search, to try and strengthen my faith. I will continue to be open, and honest with my friends, and family, and try to enjoy each day, the best I can. I'm really trying my best. I don't know what more I can do.


- Posted using BlogPress from my iPad

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.

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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.