Thursday, December 2, 2010

Far From Awesome

My best friend sent me a link to a story about a bride to be, named Rachelle, who was recently paralyzed in a freak accident. She suffered a C6 spinal cord injury, after her best friend pushed her into a pool, at her own bachelorette party. Rachelle was recently interviewed by Meridith Vieira on the Today show, where she talked about her injury, and recovery. They don't mention in the interview, or accompanying article if Rachelle's injury, is complete or not, but given the level of her injury and the amount of recovery she's gained, I'm guessing it is a complete injury. They show her clearly able to push herself in a manual wheelchair, playing wheelchair rugby, and using a universal handcuff to feed herself, which all indicate at least some function in her biceps, triceps and wrists. She mentions having a supportive family, friends & fiance (whom she still intends to marry) and even discusses the fact that neither she or her family blame her best friend. She even goes so far as to calling her current life "awesome" and cites her positive attitude as they key to her recovery, and rosy outlook on life. I commend her for her positive attitude, and will even go as far as saying, she is certainly an inspiration, to anyone, newly injured with a spinal cord injury. However, after living with paralysis for five years now, I'm forced to wonder how long she'll be able to maintain that same zest for life. Her accident, injury, and point in life, at which she was injured, are all very similar to my own experiences, so I can't help but want to compare our situations, and our very different perspectives.

Whenever I come across stories similar to my own, I filled with mixed emotions. On one hand, it's comforting to know that I'm not unique; that there are other people out there, that might truly understand what I'm going through. It's also comforting in the sense that it dulls the overwhelming sense of guilt, regret and astonishment over my own poor judgment. I'm constantly beating myself up over the stupidity of my accident, and forever searching for a motive, or reason behind why I did what I did, and why I'm having to pay such a high price, for one, foolish split section decision. It does help, in a weird way, knowing that I'm not an anomoly, and other people have made the same mistake. On the other hand, it saddens me and disturbs me, to know that there are people out there living with a similar situation, because I know how horrible it can be. There are few people I'd ever wish to be paralyzed, or to live in my shoes, and even then, I'd only ever wish it as a temporary learning experience (politicians and lawmakers come to mind). It breaks my heart, and frustrates me, to know that millions of people have to live with paralysis, because there is no cure. When I think of my own experiences, living with paralysis, my sympathies, outweigh any comfort I gain, from knowing there are people out there just like me.

It's shocking to me, and hard to understand, when I come across people (or read, or hear stories about people) that are living with paralysis, like Rachelle, Joni Eareckson Tada, (the late, Christopher Reeve) or Dr. Dan Gottlieb, that claim to be happy, and living fulfilling lives. Granted, all of the people I listed have mentioned some of the hardships they've faced due to paralysis, but if you read their writing, or articles about them, the majority of what they say is very positive and inspiring. Obviously, I don't know much about Rachelle, except the little I've read online and what she said in her interview. However, I own books written by the other three authors I mentioned, and have followed their stories through videos and writing on the web. Rachelle's case, is especially mind boggling to me, because she is so newly injured. She hasn't even been injured a year, and yet she has seemingly not only has come to grips with an unfathomable amount of change and loss, but appears to be happy and thriving. In comparison, I've been injured for five and half years, and still find day to day obstacles traumatizing. Thinking back to my first year post accident, I can only recall memories of trauma, disappointment, pain, shock and fear. The first year for me, was hell on Earth. Many people that I've read about, or spoken to, admit that it has taken years for them to learn to cope, and/or be able find joy in life with paralysis. I can't even begin to imagine how people like Dr. Gottlieb, or Joni have managed to stay sane, and inspiring, after decades of living with paralysis.

I've come to the conclusion that people like Rachelle, are rare people, who despite insurmountable odds, can somehow find peace, and joy, no matter what life throws at them. I try not to beat myself up for not being able to live up to that standard of inspiration, because I feel it is completely unrealistic, for the average person (myself included). I have to force myself to take a mental step back, and examine the facts. If I were to compare my situation to Rachelle's, for instance, the first major difference I'd have to consider, is the fact that she has functional movement. That is huge! The fact that she has some triceps and wrist control (from what I saw, and her level of injury) means that she can do a lot more for herself. For example, I can't use a manual wheelchair, pick anything up, or really feed myself. Although, those might seem like small victories to the average AB (able bodied) person, each level of function down the spine translates into more freedom and independence, for those of us living with paralysis.

Another huge difference in my situation, versus Rachelle's situation, is the fact that her fiancé is still at her side. The support, or lack there of, of loved ones is critical to anyone's overall mental strength, and stability. The sad truth is, that most relationships don't outlast a devastating, life changing event, like a spinal cord injury (especially, a high level, cervical injury). Most romantic relationships fall apart, friendships fade away, and even family can let you down. There's no telling how people will react to scale of change, and loss that paralysis brings with it, until they are actually faced with it. It takes a massive amount of patience, compromise, and work to live with paralysis. Unfortunately, for those of us who are paralyzed, we have no choice, but to face the situation, for what it is, and try our best to move forward. Family, friends, and significant others, all have the luxury to run away, as heart wrenching as that might be. Many people choose the easy rode, and opt out of the situation, either all together, or at the very least, enough to give themselves a break (a much deserved break- in the case of the people that do choose to continue to be in the person's life, who's suffered the injury). While I have an extraordinary group of friends, and supportive family, my romantic relationship ended up, as most do, and I've had my share of surprising disappointments, with some of the people I least suspected.

I'm not speaking from bitter resentment, or cynicism, I'm just being realistic. I witnessed dozens of people, left behind, during my stay in the nursing home, and rehab, and have read about, or met, countless other people, such as myself, with similar stories. It is the nature of the beast. Paralysis isn't pretty. It is not easy to live with constant compromise. I can't say with certainty, what I'd do if my situation was reversed, but if I had an escape, right now, I'd surely be running. So I don't lay blame, or judge anyone, in my personal circle of loved ones. I do know for certainly, that having that support, especially that of a spouse, or significant other, does make a world of difference. It is a very hard rode to travel, at all, and almost impossible to do it alone. Rachelle should consider herself very lucky. However, the realist in me (or cynic, as some would say) can't help but point out that time will be the true test, especially since it hasn't even been a year since her injury. I only hope her fiancé will prove the statistics wrong.

I often ask myself, if I'm at fault, for not letting myself be happy; if I'm too negative, or too stubborn. I don't think it's wrong, to want more, or to be dissatisfied with my life. Should I just give in, and accept the fact that it should be ok that I have to endure, the things I have to endure on a daily basis? To what end should I compromise, give up, and let go? I don't think it's right that anyone should have to go through the things I do. It's very easy, for those looking in, to suggest being satisfied with having to do everything I ever knew differently, to find enjoyment in the remnants of what's left of the things I used to love to do and to find the strength to cope with the constant invasion to my personal space, and privacy. It's not so easy to do all of those things; at least for me it isn't. I have a feeling, that most of the people that dish out advice, would have difficulty following the things they expect me to do, if they were forced to have to experience my life firsthand. Does that make me a negative person? Is it really negative to see things at face value and call them out, as they are? I don't think so.

There have been many times in my life, since my accident, that people (strangers and friends alike) have called me an inspiration, for moving forward, for painting, and for my writing. I've never tried to be inspiring. Reality is, I have a very limited amount of choices in front of me, and I pick what I can handle, from day to day. One, I can give up all together, which is often very tempting, trust me. Two, I could ignore my past completely, give up on all my dreams (I'm not talking about compromises) and embrace my new life; don't hold your breath. Three, I could put on a show, hide my true feelings and endure in silence, or indulge in sugar coating. Four, I can try my best to compromise and share my experiences, pain and all. 
Most days I choose number four, because number one would hurt my loved ones, and because I want people to know why a cure should be found. 

I can't envision myself ever being able to compromise on certain aspects of my life, or be able to accept with the compromises that are forced onto me (like having a catheter, bowel regime, or lack of physical intimacy). I want people to know my pain, and see the whole picture of paralysis. I want people, that can otherwise run away, understand the truths that I'm stuck with. I believe it's the painful, ugly, embarrassing aspects of paralysis that impact people, in a deeper way. I mean, if my life were awesome, why would I need help? If paralysis isn't so bad, why bother to cure it? I don't say that, to diminish, or belittle the positive, inspiring people, like Christopher Reeve, or Rachelle. I commend them for their efforts, and am envious of their ability to deal with their lives. I just feel it's important to have balance, and necessary, to educate the public, about all aspects of paralysis, because in the end, no matter how well someone copes, I'm one hundred percent sure, we all would rather be cured. 


  1. This is my first time visiting your site. I followed a link on Sugar's column at The Rumpus. This post is eye opening, thank you for sharing your feelings and experience.

  2. I came here via Sugar's column too. Thanks for sharing this.

  3. Wise words. I think it's important that the public understands spinal chord injury in a raw and real way, because as you said, it does impact people stronger. I am also paralyzed (T level though) but you are very relatable and personal. Thanks.

  4. I respect greatly that you won't accept that which is unacceptable.
    You are strong and honest.

  5. Amber said, I've been paralyzed 5 years & even though my injury is T6, I relate 2 everything you said. In my opinion, being paralyzed sucks & is no way to live. I still haven't totally adjusted & been able to find peace with myself & the way my life is now.People want 2 say that I'm also inspiring but we all have no other choice but to keep going & keep living. I wish I could have a good attitude like the girl does that you were talking about does but unfortunately, I've never had a good attitude or been happy since I've been paralyzed. I wish the best for you & God bless you.

  6. As anyone without a spinal cord injury knows, the prone exist to remind the upright of their great good fortune.

    As anyone with a spinal cord injury knows, "You're inspiring" means "Fuck, I'm glad I'm not you."

  7. It pisses me off that anybody with a such disabling condition feels obligated to maintain a positive attitude. Grief and frustration are not moral failings.

    I wish I could wave a magic wand and cure paralysis. In lieu of that, here's a link to a like-minded essay from an unparalyzed but severely ill person:

  8. I found this while researching what my son will have to deal with if he does survive his injuries. I wonder if he will be glad or angry that they were able to save his life. Right now he lies in the ICU battling another infection. His injury is new...just 5 weeks...and they have no even begun to treat all the broken bones. Thank you for this candid essay. It helps me understand a small part of what my son will go through. I hope you are as well as you can be given your circumstances.