Tuesday, April 13, 2010

Spinal Cord Injury Envy

As awful as this may sound, every once and a while I get jealous of people who’ve become paraplegics and quadriplegics (‘plegics from here on in -- it’s less cumbersome to say and a whole lot easier to type) as the result of a spinal cord injury (SCI).

I’ll take a short pause here so those readers who feel the need to do so can express their disbelief and outrage that anyone would ever say such a thing before they (hopefully) continue reading.

It isn’t easy for anyone to deal with spinal cord damage, paralysis, and all of the garbage that comes with it. However, from where I sit, becoming a ‘plegic in the blink of an eye seems to have some distinct advantages over ’plegia that comes on incrementally as the result of a progressive, degenerative condition.

Advantage #1: The Possibility to Grieve and Move On
Everyone who acquires a serious disability will, at some point, go through the process of mourning what they have lost. When that disability happens in a heart beat, there exists the possibility to grieve the loss, come to accept it (even if that acceptance is uneasy), and get on with the business of living your life. This does not happen with everyone, nor does it necessarily happen quickly, but generally you only go through the grief process once.

With a degenerative condition, each new loss can start the grieving process anew. Just when you’ve finally come to accept the reality that you’ve lost your ability to walk and now need to use a wheelchair, you may find your hands have grown too weak to hold a pen, and it all begins again. When the changes occur in rapid succession, life can become one prolonged session of mourning.

Advantage #2: Things Can Always Get Better
While there are exceptions to the rule, most progressive conditions, as the name states, cause those who have them to go from their best to their worst. There may be plateaus of stability, and even time when you are able to recover some of what was lost in the last decline, but for the most part, it’s a downhill ride.

With a SCI, you pretty much start off at your rock-bottom. There’s always the possibility that over time, as the swelling of the spinal cord abates and the body tries to heal itself, that part of what was lost will come back. Working hard at maximizing what you’ve got almost always results in improving your level of functionality, which brings us to…

Advantage #3: Going to Rehab (Not the Amy Winehouse kind)
Rehab is boot camp for crips. It’s an individually-tailored crash course designed by a team of multi-disciplinary experts in SCI (including but not limited to physiatrists, nurses, urologists, therapists, mental health professionals, and even other people with disabilities) that helps prepare the newly-injured to live as independently as possible. Using a variety of therapies (physical, occupational, recreational, social, etc.), rehab teaches people with SCI how to do the activities of every day life, with or without assistance -- getting dressed, going to the bathroom, cooking, cleaning, grooming/hygiene, getting in and out of your wheelchair. It’s about building strength, endurance, and coordination, and to maximizing functional recovery, all under the guidance and direction of experts who know what you need to do, and work with you (and on you) to get ‘er done.

The vast majority of people who come into their ’plegia a little bit at a time, over a long period of time, never get the benefit of intensive rehab services. As a result, most of us end up just making it up, and making do, as we go along. We fend for ourselves, without the advice and guidance of professionals knowledgeable about SCI because we don’t know who those experts are or how to find them. Fortunately, the Internet has made it easier to find answers to our questions, but it’s a poor substitute for having direct access to a multi-disciplinary team of experts during the earliest onset of your ‘plegia and all of the challenges it brings.

I realize, of course, that seeing all these advantages isn’t really an attack by the green-eyed monster -- it’s buying into the a fantasy that the grass is always greener. I’m sure that somewhere out there is a quad survivor of an auto accident with her own list of reasons why becoming a ‘plegic in stages would be a lot better than waking up paralyzed.

The truth is that every ‘plegic, regardless of how we became that way, faces the same challenges: making -- and keeping -- ourselves as independent as possible; dealing with the “perks” of SCI/D (injury/damage) like central pain, bowel and bladder management, and spasticity; and living the life we want to live in a world that’s not always as accessible as we need it to be.

Truth be told, I’m actually quite okay with how my life’s played out. Of course there are rough patches (some rougher than another), but I always manage to get through them. I just need to stay focused on making the most of the time I have between the declines. If I can do that, I’ll be a lot less inclined to wonder if my life would be better on the other side of the fence.

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