Wednesday, January 30, 2013

Adaptive Living–Adjusting Mentally

How do you explain yellow to someone who has never seen colors? Likewise, how can a person truly understand what it’s like to have a significant disability if all they've known is ability? I suppose you can daydream about what it would be like to, say, have no legs or no hearing. Still, it’s a whole different animal when you experience a physical or mental event that leaves you unable to do the things you used to do. Let me tell you my story.

I was in film school, directing a short movie that I had also written. A knife throwing stunt went terribly awry, with the knife becoming embedded to the hilt in my shoulder. As a physical therapist would later tell me, "That's one hell of a shot – the thrower couldn't have done more damage if he was purposely aiming!” That single knife throw managed to sever the arm's main artery, as well as severing nearly every major nerve trunk in the brachial plexus. The damage to the artery nearly killed me (I literally lost more blood from my body than I kept), but the damage to the nerve plexus caused complete paralysis of my right arm below the shoulder. 

The neurosurgeon's prognosis was bleak – Expect permanent paralysis. Over the course of the following year, some of the nerves successfully regenerated, restoring full upper arm functionality and partial forearm functionality. However, nerve damage to the hand was permanent.

immobility
Living with a permanent disability doesn't have to stop you.
(Photographer:Scott Heavey/Getty Images from www.bloomberg.com)


Moving on after permanent disability


With a traumatic and permanent injury, it's inevitable that the injured person will go through the five stages of grief: denial, anger, bargaining, depression, and acceptance. But how quickly one passes through these stages can vary dramatically. For me, I had to go through the five stages twice. The first time – immediately after the injury – went by fairly quickly, within just a few days. There are couple of reasons why I feel I adapted quickly:
  • Several years earlier, I was in a major auto accident in which a close friend suffered a neck fracture that resulted in quadriplegia. Because of this, I had spent many hours in the years following that crash wondering how I would cope if I ever became a quadriplegic. Frankly, it was very hard to imagine coping with something so tragic. But the process of imagining somehow prepared me for my own paralysis, making it seem insignificant by comparison.
  • When the doctor told me that my stabbing accident would likely mean I would never use my arm again, I found I was able to accept that fate rather quickly by looking at what I wanted to do with my life. In truth, my career goals (writing and directing) and most of my personal interests and hobbies did not necessarily require me to have two good arms.
I experienced the grief cycle more profoundly about a year and a half after the accident. Why? About six months after the accident, I began experiencing some muscle movement in the upper arm. That got me quite excited, thinking that maybe the nerve damage would not be permanent. While the neurosurgeon said that I was lucky to regain anything at all, he cautioned me not to get overly optimistic: that nerve regeneration often fails to complete its course all the way down the arm to the fingertips, and that whatever regeneration I would experience would have to take place in the first 12 to 18 months after the accident.

He was right. About 12 months after the accident, the nerve regeneration stopped about midway through the forearm. I waited anxiously for several months, and then finally realized that some paralysis would remain forever (which it has, in spite of two or three follow-up surgeries over the years). Coming to accept the loss as permanent after a period of hope took a lot more work for me than it took to accept the original no-hope prognosis.
 

Adapting mentally to permanent loss of function

Many of us have disability stories to tell. Hopefully, yours is less dramatic than mine. But the stories are varied, sometimes being about mental or physical abilities that became inabilities; sometimes about the disability happening suddenly; sometimes about the disability developing gradually. No matter how dramatic or extreme the acquired disability is or is not, or what types of physical disability, it will always be a loss from which a person must either reach a point of acceptance or wallow forever in self-pity.

Choosing the latter course creates the most profound of disabilities. History is full of amazing stories of individuals who have overcome a disability to achieve greatness. But none of those victors achieved greatness without first coming to terms with their loss, and then moving on: Moving forward. Here are four effective ways to help you move on with living:
  1. Consider professional counseling. You may be able to surmount the mental challenges to developing a permanent disability, so I won't say that it is a mandate. But a professional counselor is almost always better prepared to help you overcome and move forward than any of your friends or family. Often, those who are closest to you are also too close to your loss, and are therefore too absorbed in their own reactions to your disability to provide you with meaningful psychological support.
  2. Find a community of support. Sometimes, nothing seems to help better than talking things out – or even just hanging out – with others who have experienced a permanent disability similar to your own. Many communities have such support community groups (a professional counselor can often steer you in the right direction to an appropriate support group for you).
  3. Connect with a "virtual" community. Even if your town does not have such a disability support group, remember that the Internet is your friend in times like this. There are countless online support groups where you can find those who understand what you are going through and can offer advice, encouragement, or a (virtual) shoulder to cry on.
  4. Give yourself a goal. Creating a "what's next" plan was perhaps the most effective way of moving forward for me.  I didn't want to be known at the USC film production school as the guy who got stabbed and nearly died. Rather, I wanted to be the guy who “got ‘er done" – who recovered and moved on so successfully that he finished his film in time for the end of semester screening. Having this what's-next goal immediately turned my focus away from my disability, giving me something positive and constructive on which to focus my energies.
immobility
Oscar Pistorius, paralympian, double amputee,
competes despite permanent disability.
((c) D Luckett/www.parasportimages.com from www.oscarppistorius.com)
In follow-up articles on adapting to total, permanent disability, we will look at other important aspects of adapting, such as adjusting physically (adaptive living) and how to be a more effective support when you are the friend, family member, or employer of someone who is dealing with a physical disability. Meanwhile, know that your physical or mental immobility issue need not limit you nearly as much as you might think it will.  Just ask the famous quadriplegic painter Joni Eareckson Tada or Oscar Pistorius, the 2012 Olympian runner who has no legs. And let's not forget President Franklin D. Roosevelt who was paralyzed from the waist down after a bout of polio, yet when on to become a United States president.

Here are some good resources that I personally found helpful in adjusting mentally to permanent disability
If you have any recommended resources you've come across on your own, please share these using the comments tool below.

Ric Moxley
Contributing Writer


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