In The Blink Of An Eye

As many of you know, I've been struggling lately, with my situation, and life in general. Living with paralysis (especially a high level, complete spinal cord injury) is an ongoing struggle. Last weekend marked the ninth anniversary of 9/11, and it got me thinking of how fleeting life really is. So much has changed for me, since that fateful day, it's almost unbelievable. I'm certain, if anyone would have told me then, what I know now, about the world and my personal life, I would've have surely thought they were insane. Both 9/11 and my accident, have been hard realities to cope with. Both situations are life lessons, in how little control we have over our own lives, and how quickly life can change, or even end.

Although I thankfully did not lose a loved one that day, I know of people that have, within my community and even had a student, that had lost her father. I'm sure, for those families that did lose a loved one, the harsh reality of life's transient nature is still a raw, painful reality. While I'm sure nine years seems like a short time, to the victims families, I'm guessing most people have put the events of that day in the back of their minds. Yes, everyone else pays their respects, and honors 9/11 as a memorial, but I doubt most people take the time to reflect on the lessons of that day, or give thanks for the fact that they are still healthy, and alive. For most people, the after effects of 9/11 are a distant memory, as is the thought that each day is a gift. People tend to forget life's lessons, unless they have a constant reminder of its consequences. I mention my accident, as an example, because I live with the after effects of that day, every day. I can't put that day in the back of my mind, just as those people who were directly effected, by the 9/11 attacks, will be reminded of that day, every day.

I'm sure everyone old enough to remember the day of September 11, 2001, will never forget the details of that day. Living on the East Coast, New Jersey specifically, had a huge impact on how I was effected personally, by the terror attacks of that day, and how the attacks still effect me to this day. The Twin Towers, and lower Manhattan, had been a familiar sight my entire life. Growing up in Union County, I could often see the NY skyline, on clear days. My family moved a bit further south, when I entered high school, but about half of my neighbors in Old Bridge were all former New Yorkers, and most of them commute to the city every morning, by bus. My senior year, I dated a boy from Queens and went into New York regularly. He taught me how to navigate the subway system, which I love, and miss riding. As a college student, I took the train into the city at least once a month, my entire four years. I always had assignments to complete, by visiting the museums and galleries, plus I loved spending time downtown in Chinatown and Little Italy. Many times, I'd take the train into Manhattan by myself, and spend all day at the M.E.T. working on term papers, or just for fun. One of my favorite things to do was bring my sketchbook with me and just people watch, and wander the Egyptian and Asian sections of the M.E.T. Chinatown was my spot for my anime fix. Back then (1999-2003), anime (Japanese animation) was nowhere near as popular as it is now, and fans had to wait months, or years for current shows to be imported. I had a favorite shop on Lafayette St., where I'd buy ten to twenty VHS tapes at a clip. I was such a good customer that the shop keepers actually recognized me by face. A perfect day would be spent with my best friends, perusing the Chinatown shops, for anime, posters and memorabilia, then hit Little Italy for some coconut gelato, and take the train home, with my arms full of bags stuffed with all of my finds.

It just so happens, that I was taking a black & white photography course, in the fall of 2001. I had gone to lower Manhattan the Sunday before the attacks, to buy all of my photography supplies. That train ride was the last time I saw the towers standing, in person. Looking back, I'd like to kick myself for not photographing them, but who could've imagined they wouldn't always be there? The following day, my brother and ex-boyfriend flew into Newark airport, on a return trip, from FL and I remember my mom (step-mom) mentioning something about a small fire at the airport, which also felt eerie the following day, when we discovered one of the planes used in the attacks, had departed from Newark (the airport I've used most frequently in my life). Tuesday morning, I was on my normal commute to school, stuck in rush hour traffic, when the woman on Hot 97 (local music station) reported a plane hitting one of the Twin Towers. I distinctly remember thinking, "What moron flies that low, near the city?", assuming it was a small personal plane (in all honesty, I pictured an old fashioned bi-plane). Irregardless, I figured my rap station wasn't the best source for news, and decided to switch to a local news station. When I changed the station, an eyewitness was in mid conversation describing the crash, when he suddenly says, "Oh S**t, another plane just hit the buildings!" The announcer immediately cut the man off and started fumbling around, saying how the station couldn't confirm the man's claims. Within seconds however, the announcer says, that in fact, they had confirmed the eyewitness report with the AP. In that instant, everything changed. It was as if everyone around me, including the announcer (by the tone of his voice), had realized that there was no way that these crashes could be mistakes; these were deliberate attacks. People started pulling over and hopping out of their cars and whipping out cell phones, I imagine, in effort to locate family members, or friends. I continued on my way to school, and met up with a professor, that was my partner for a Freshman course, we were assigned to co-teach that morning. The campus was a bizzar mix of silence and chaos. There were some people still in classrooms, completely unaware of what was going on. In contrast, there were other areas where people were buzzing around, frantically trying to call loved ones, or groups of people, huddled around radios. The professor and I decided to head over to the University Center, where there were several tvs. It was already crowded in the lobby as we entered, and everyone was glued to their spot, looking up at the pictures of the black smoke, billowing out the side of the towers. I can remember thinking, "It'll be ok. They'll evacuate the buildings and be able to repair the damage." Only a few moments after that thought, I watched the first tower come tumbling down. The whole crowd gasped, and people started crying (including me), and hugging strangers. Not long after, the second tower collapsed, and we decided to head back to the office, still in shock.

Naturally, the University announced it would be canceling classes, so the professor and I went to our classroom to inform any students that might show up unaware. The eight o'clock classes were all letting out, and most of those people were learning about the attacks for the first time. Some of our students showed up, and I remember one girl in particular, that was in total distress, because they had closed off the city, and she had no way home and had not been able to reach her family by phone. I offered for her to come stay with me, if she needed too, but she declined. Thankfully, her family was fine, in the end. Back at the office, a good friend of mine, was also in a panic, over his dad, who was also eventually found. I called my boyfriend (at the time), to see if he had heard all that was going on. He worked for the phone company, so I was unsure if he'd had a chance to hear the news (because he was constantly in and out of his van, and various buildings). He was working in Newark at the time, and turns out that he was actually able to witnessed the buildings fall firsthand. It all seemed so surreal. With classes canceled, and work closing (I worked on campus), I decided to track down my best friend. It happened to be her twentieth birthday that day. Once I found her, and her boyfriend, we headed to her house and spent the rest of the day, glued to CNN. I'm sure it's one birthday she'll never forget.

In the weeks that followed, I stopped watching the news. I had begun having nightmares, of the poor people jumping from the burning buildings. I couldn't stomach seeing the images after a few days. Instead, I decided to go around New Jersey, and photograph all the makeshift memorials, that had popped up everywhere. The NJ Historical Society had asked my professor if he would help them document the memorials. Both my professor and I were interviewed byNJN, which is a a local tv station, about our roles in the project. A few of my classmates and I had our photographs displayed at the NJ Historical Society, in Newark, as part of a tribute exhibition. Ironically, the thing I remember most about the exhibit, was not so much the art, as book they had, listing all the victims from New Jersey and their respective towns. I can remember flipping through the pages and thinking about all the families that had been impacted, and how many lived in town I knew. It was a very moving experience.

About a week after the attacks, my stepmother began working with FEMA, as a crisis counselor. She worked under a special grant, named Project Phoenix, that provided free counseling services for victims' families, survivors and all the first responders. They were set up in Jersey City, and would ferry the people back and forth, to allow people to place mementos at the sight, and grieve. My mom can't talk about it much (for confidentiality reasons), but I remember some of the horrific descriptions of the site itself and can only imagine the terribly sad things she witnessed. I was (still am) very proud of her, for the work she did under that grant, which lasted at least a year (I'm a bit fuzzy on details). I'm sure she feels that way too. So many people (myself included) want to help, in a time of crisis, but don't know how, or can't. It's horrible, feeling helpless. The only downside (if you consider it that way), to my mom working at ground zero, is that she is now one of thousands, that has to be concerned (and has been examined for) with health related issues, due to all the toxins that were in the air. I'm sure all the first responders, survivors, and people like my mom, have long lasting emotional, and/or physical reminders of that day.

When I think about 9/11, or my accident, I can't help but still be in shock at how fast life can change. My whole life I've heard people say stuff, like "You never know, I could get hit by a bus tomorrow." However, when you're young and healthy, it's so easy to take life for granted. The unfortunate truth of the matter is, life can change in the blink of an eye; it doesn't matter how young, or healthy you are. Both September 11, 2001 and my accident are proof of that fact. The people that died in those towers were minding their own business, working. I'm sure the great majority woke up that morning, and started the day like any other day, and naturally, had no clue that they would never return home again. Just as, a split second mistake changed my life forever. One minute, I was healthy, happy, on my feet, and the next I was paralyzed, forever dependent on others, and all of my dreams were shattered. Although I didn't die, there is a great part of me that feels missing, and I do mourn over the person I was. In many ways, my life ended the moment I broke my neck; the life I had built, and the plans I had made. In retrospect, I wish I would have savored every moment on my feet. Knowing what I know now, magnifies all of my regrets. Every mistake, moment, or opportunity I didn't take, or missed out, seems intensified, because I know I'll never be able to have a second chance at experiencing them. Once time has passed, you can never get it back.

Some people try to protect themselves from disaster by avoiding life all together. I can remember my parents being wary of me going back into the city, after 9/11, and didn't agree with me traveling overseas in 2003. They were certainly not alone in their fears. Many people to this day, avoid big cities and/or flying, for fear of attack. I don't agree with that mentality, because I think it plays into what terrorists want; for us to stop living. I think living in fear, is the exact opposite of the lessons we should learn from catastrophic, life changing events. That is, that life is temporary, and that no one knows what tomorrow will bring. As cliche as that might sound, it is the truth and there are a million ways that life can change, and catch you completely off guard. Of course, it is important to be cautious, and mindful of the decisions you make, but it is equally important to recognize that there are always going to be factors outside of your control. For those people that are fortunate enough to be healthy and be able to care for themselves, the message, is to really enjoy life, and recognize how lucky you truly are. Once your health is gone, all the "problems" you think you have become secondary. Once you're gone, you're gone, so embrace your health and life, while you have it. Take the time to reflect and be grateful for what matters most, your health and the people you love.

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. 

Stressed Out!

As you can imagine, I've been dealing with a significant amount of stress since my accident. I would say my day to day stress level is relatively high compared to the average person. I say this based on my past experience and the comparison in the types of problems or stressors I dealt with before my injury versus now. I can also cite examples based on all my friends and family. I realize that all emotions or moods are relative; given that each person has different coping skills and life experience. Stress is not something we can really quantify so it's hard to compare stress levels between people. Not to mention, one man's problem could be another man's blessing.

My entire perspective on life now is different from before my accident and in many ways I feel like a completely different person. My accident changed me both physically and mentally. I think of my life in two parts and feel as though I have lived two separate lives. It's as if the "old Christina" died June 5, 2005 and the "new Christina" emerged. Obviously, this is figurative, because I didn't actually die. However many of my old thought processes and view points "died" and have been replaced with new ones. I imagine even if I were to be cured and on my feet again, that the experience of living with paralysis will have left me forever changed.

I have to admit that despite all the hardships and loss I've endured, the accident made me a much stronger person mentally. I've been able to deal with things that I never thought I could. The human spirit is pretty amazing and I even surprise myself at times. Most people think they know how they will react to stress or trauma, but I've found that a lot of people don't give themselves enough credit. I know for sure that if someone asked me how I'd react to my situation before I was injured, I would have said I'd rather be dead. There have been many times I've thought that since my accident. However, there is a huge difference in imagining something versus having experienced it. Prior to my accident I had never so much as broken a bone. My closet "brush with death" would have been a sprained wrist, four stitches or perhaps my old driving habits. In the past I imagined giving up would be easy in comparison to living with paralysis, but the fear I felt those seconds or minutes I spent under the water that night changed all that. I felt no peace or comfort when I was drowning. There was no white light or sense of calming. In those few moments, I felt overwhelmed with fear, sadness and fear. It's hard to let go of that fear, especially knowing what I went through in the hospital. The thought of returning to that state terrifies me. I was naive in thinking how easy it would be to just give up. The cliche "ignorance is bliss" rings true when I analyze my thoughts before my injury. There's no way of really knowing how much stress you can handle unless you are faced with it. For me, the experience of coming so close to death has made push to stay alive. My driving force is based on wanting to fix my mistakes and my hope for the future. Every time I think I can't possibly go on another day I try and remind myself of everything I've been through and everything I've somehow overcome.

I feel as though paralysis is the source on ninety percent of my stress and it is frustrating trying to figure out ways to cope. There is no guarantee that my paralysis will ever be cured, therefore I live with the fact that no matter what I do there are certain problems that might not ever go away. That is why I say that I have more stress than the average person. The only true solution would be a cure to paralysis. It is especially maddening when people suggest medication or talk therapy to me. I've done both with little success. I take medication, but still feel depressed and anxious. How can I not, given my condition? Isn't it normal to be bothered by paralysis? Who on earth (of sound mind) would be happy to be sick or have a chronic illness? I think it's only logical that my situation bothers me and find it useless to think I'll ever be completely satisfied this way. If there is no remedy for the source of all my problems, all I can do is find new ways to deal with secondary issues created by the underlying cause. I'm sure most people with chronic illnesses can relate. It's difficult to cope with symptoms or outlying issues, when you know you can't get rid of the root of the problem. It can become so overwhelming at times, because I know no matter how many days I get through, there is another day of the same stuff waiting for me. My paralysis effects everything; until it's cured I will always face certain obstacles and stress.

So many of life's stress factors have solutions or resolve themselves with time. Relationships, financial troubles, raising children and even grief can be worked out over time; the pain dulls or solutions are found. In my situation, there are many stressful things that I need to do just to stay alive. As much as it bothers me, I don't have the luxury of moving on, or getting over it. I'm faced with the consequences of my accident day in and day out. Although some things that used to bother me seem ridiculous to me now, at the time they seemed valid. I try and keep that in mind when I talk with family and friends. I can see how easily someone in my situation could slip into cynicism and bitterness. It's hard to be sympathetic when your problems seem so grave in comparison to the people around you. I can't tell you how often I've thought, "I wish those were my problems." It's at those moments I have to remind myself that most of my friends and family will never truly be able to see life from my perspective and I shouldn't fault them for that. I try and think about how I might have reacted before my accident and try my best to recall my past. I push myself to make an effort to take a genuine interest in my loved ones lives. I value them and don't think it's fair to drag them down with me or belittle their problems (regardless of how insignificant or shallow they might seem to me). No one wants to be around a grouch or someone in a constant state of self pity.

I've found ways to not only cope with my paralysis, but how to mask a lot of what I'm going through. In some respect I feel it's not fair to those around me, even if I start to feel overwhelmed by everything I've kept bottled up. Most times I feel disenchanted and see no point in discussing my problems. The majority of stuff that bothers me is directly related to my paralysis such as, needing help with every single little thing. I never get a break from people and never feel like a truly have privacy. I've been injured now for over four years and still haven't figured a way to deal with needing help with highly personal things, such as going to bathroom, being bathed, fed and dressed. Outwardly, I'm not breaking into tears every morning or going into hysterics, but on the inside there's a torrent of emotions running through me. If I do express my discomfort, most people try and brush it off or down play it like it's no big deal. I understand there aren't many right answers or advice to give. No words can ever make me feel 100% better. In fact, most of the time I find myself getting annoyed and/or frustrated with the person, especially if they are able bodied. My able bodied friends and family sometimes think they can imagine what it's like to be paralyzed, but they can't. It is one of those things that you have to live through to understand. The problem with imagining something is that you are limited to drawing from the experiences you've had. There is no experience you could have that compares to certain aspects of paralysis. Often times I can't even find the words to explain what I'm feeling, because it's unlike anything I ever experienced on my feet. It can be very frustrating, because no matter what I use as a comparison, it's just not the same . Sure, you could try and simulate the experience by restraining your limbs; to experience the discomfort of having to have help, or feel the sense of vulnerability. However, such a simulation doesn't even begin to truly mimic what it's like to be paralyzed. A good example of this is how nurse's aides often have to "ride" in a Hoyer lift to help promote empathy for their patients. Although some people might feel nervous at the thought of being suspended in the air, it's nothing close to what it's like for someone like me. For starters, an able bodied person can grab onto the machine for security. I have no way to stop myself from falling or brace myself if I do fall. Secondly, an able bodied person can feel the sling beneath them. I have no sensation below my chest and therefore, if I can't see what's going on it feels as though the rest of my body does not exist. Not to mention the fact that someone taking part in a simulated exercise knows that there discomfort is only temporary. If I knew for sure that I'd be back on my feet, it'd give me a tremendous boost of strength and motivation. It's the difference of an innocent person serving a short jail sentence and being on death row. In both cases the innocent person is being unfairly punished, but the person with a designated time frame has the advantage of knowing that it's temporary. If I knew the date of when a cure will be found I would have the peace of mind in knowing what I'm up against. A set time frame gives you something to look forward; there is an the end. Even if that magical cure date was beyond my lifetime at least I'd have an answer. My situation overwhelms me at times because of the uncertainty of ever getting cured. Granted, my accident is an example that, despite set plans, no one ever really knows there future. Plans give us the illusion of control over our lives, and there are times when life throws in surprises. However, there are certain definites, just as I know for sure that my birthday will be on July 4th, it would be awesome to know when there will be a cure.

One of the many bad things about stress is that can have a direct impact on your health. Stress, like many emotions, it is not limited to just effecting your mood. I think keeping all of my stress bottled up is having a negative effect on my body. Lately, my aides and I have noticed that I'm losing hair. Having long, thick hair that is prone to knots means I'm accustomed to losing a certain amount everyday, just by brushing it. Recently though, it's been much too much to be normal. I know it could be from a dietary deficiency, but I doubt it. My diet is well rounded with fruits, veggies and protein and it hasn't changed drastically in any way. My medicine and environment are stable, so I'm thinking it's got to be stress related. I've also been battling acne since my accident. My skin used to be near flawless, which I had chalked up to good genes. Now I'm beginning to wonder if other factors (like medicine) were keeping my skin so nice or if the problem is only related to my current situation. I have several theories as to the cause; stress being number one. I have been going to a dermatologist and trying various treatments, but none have been very successful. My body has already been through so many changes because of the paralysis and now it seems I'm creating more problems by stressing out. I know emotion/mood has an effect on health and healing, but it is near impossible for me to eliminate the stress, anxiety or sadness I often feel. My hair and skin are not only proof of stress, they are now also a new source of stress. I feel faced with a double edged sword.

I've decided to attempt to lower my stress level by writing letters to a few people close to me. I think some of the things that are bothering me could have solutions, if the people doing them are willing to compromise with me, or change. Although I don't particularly mind arguing, I'm terrible at approaching situations where I have to tell someone they are doing something that bothers me. I'm fine once the ice is broken, but I struggle to bring up the subject. I have the most difficulty when the issue effects me specifically. In other words, if you did something mean or bothersome to my friend, I have no qualms about opening my mouth immediately. I'm fine at speaking up to help others, but I stink at sticking up for myself. I often just bite my tongue or let the frustration roll off my shoulders. I can forgive easily, so minor annoyances often get overlooked. The problem is, if I ignore or avoid things when they are small, they tend to snowball into something big; making it even harder to address or fix issue. It is the one area that I have a hard time expressing myself. It's especially worst with adults and even more so the closer you are to me (relationship wise). Writing down my thoughts gives me the comfort of being able to say almost anything. I also get satisfaction in knowing I've said everything I wanted to say, without getting interrupted or forgotten. So, I'm hoping to break the ice with a few people, about a few issues that are resolvable. I'm hoping the letters will open up the dialog and that I'm able to get a little relief.

Report about spinal cord injuries in Haiti

I just read this report by ABC http://abcnews.go.com/Health/Wellness/haiti-spine-specific-medical-aid-doctors/story?id=9554088&page=1 (the Christopher & Dana Reeve foundation just posted it on their Facebook).The report addresses the issue of spinal cord injuries due to the earthquake in Haiti. I'm sure the number of spinal cord injuries is staggering, considering the magnitude of devastation. I'm really pleased to see that there are initiatives under way to try and provide care to all of the survivors. I only wish (as does everyone, I'm sure) there were a way to get the medical care to survivors faster.I've been thinking about this specific problem ever since the earthquake occurred and wish I could do more.

Given my own injury (C4 complete) I understand all to well how much care these people need and how critical those first few days/hours are, after sustaining a spinal cord injury. I can only begin to imagine the pain and suffering the Haitian people are going through. It is understandable that the people with spinal cord injuries are being injured further in the desperation to save their lives. I'm sure the average person helping to rescue or free people from the rubble has no way of knowing how severely someone might be wounded. Even if it's clear that someone has been paralyzed, there is such limited access to equipment that I'm sure the priority is just getting the person in to see a doctor with what ever means they have to bring them there. Quick access to medical care is crucial with any severe injury and it's almost unbelievable that people are surviving days trapped beneath the wreckage. It is a race against the clock for the rescuers and survivors. The survivors need medical care as quickly as possible and the rescuers have to move as fast as they can for their own safety as well. It must be terrifying having to worry about tremors which could possibly kill the people still waiting to be saved and/or injure the rescuers as well.

I was pulled out of the pool (which probably did more damage) seconds after I broke my neck. My rescuers thought I was drowning (which I was) and had no way of knowing I had broken my neck until I was out of the water. I was taken away by ambulance quickly and had the best available treatments, in a clean, modern intensive care unit and yet I still almost died. Four years later, I still require special equipment and aide on a daily basis. I rely on government programs for medical supplies, medicine, medical care and day to day help. Its heartbreaking to know that the people in Haiti have no support systems or programs to fall back on. I'm so glad that there are groups out there that can hopefully coordinate their efforts to help give those people with spinal cord injures the care they need. Until a cure is found, paralysis is a lifelong condition and the survivors will need a tremendous amount more help than able bodied survivors. It will be a miracle if many people manage to pull through "recovery" and be stable enough to continue on with their lives. This earthquake has already robbed too many people of their homes, possessions, loved ones and health. Although we can never get back all the lives lost, I hope we can help give Haiti an even better system & infrastructure than they had before the earthquake.For those living with paralysis, they will need more than just the short term rescue efforts. They will need a system stable enough to provide help long after the cities are rebuilt. I hope that there will be a future filled with the care and support services for the Haitian people. I'm sure the country can rebound and advance if its people are given a fighting chance.

My heart goes out to all the people suffering in Haiti and to all the people that are helping the recovery efforts.