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Life After Paralysis is a blog that represents a variety of paralysis community members. It is a place for open conversation about the issues and the interests of people living with paralysis, their family, friends, caregivers, and the professionals that serve them. Comments are welcome!
The opinions expressed in these blogs are the author's own and do not necessarily reflect the views of the Christopher & Dana Reeve Foundation.

Love Your Fate

(NOTE: following are some thoughts that help me get through a bad day. Maybe they can be of some value to you, too.)

Ever since I was in college and first read the post-WW2 existential thinking of French-Algerian, Noble Prize-winning writer, Albert Camus, I keep coming back to images he evoked in his writings. Briefly, Camus thought that life was absurd and the universe was uncaring and if you try to react to this reality with despair or cynicism, you lose. You have to respond differently. And it was through the Greek legend called the Myth of Sisyphus that he brought this vividly to life.

In Greek mythology – something I know little about – the man Sisyphus, for some ill deed, was condemned to spend eternity pushing a big bolder up a steep hill, only to see it roll back down when he got to the top. He had no choice but to go down and push it up again.

Camus saw this as behavior not unlike working in a modern office every day, doing the same task over and over again. You might see it as “Groundhog Day” without the happy ending. Or dinner every night with the spouse you seem stuck with, having the same infernal arguments. It’s the kind of analogy of frustration that can extend to anyone who feels that they are pushing their own unique rock.

My rock – block that metaphor! – is paralysis. It’s a never-ending test. This is not something that other people, especially if they are nondisabled, want to hear. You can’t go around bemoaning your fate or your latest infection because it sounds weak. There is a modern public persona that you must maintain at all times. Act like you are unaffected. Always put on an optimistic, I-can-lick-this-thing face in the presence of others. This is expected in the current era. Then the other party might lose their wariness and see you as just another person, a really cheery, indefagitable person of almost heroic proportions.

Which is not true.

Speaking for myself, paralysis generates a lot of problems, both physically and mentally, and the way you deal with them when no one else is around will help determine how you see the world and it sees you.

Here’s one example. I have a wound on my hip that refuses to heal. For three months I was connected to a wound VAC, as I mentioned before, that was supposed to heal the wound by drying the sore and increasing blood flow. It didn’t work. In fact, Medicare pulled the plug because they couldn’t see any progress. The only option left, apparently, is surgery.

This has been going for two years. I’d call that a burden.

Beyond this exasperating condition, I have many of the other problems that most paralytics have. There’s virtually everybody’s bugaboo, depression, which, thankfully, can be at least partially medicated. And there’s anxiety, which, thankfully, can also be at least partially medicated. But there’s a third state of mind that can’t be medicated: the sense that you are permanently wounded and can do little to escape its consequences. Beyond numbing yourself with alcohol or drugs, there’s no way out.

Paralysis, at least in my case, is a slow-moving, incremental battle. It reinforces an attitude expressed by the Stoic philosopher Marcus Aurelius: “The art of living is more like wrestling than dancing.” Some days, many days, in fact, it is no battle at all, just a minor irritation or misstep here and there. On other days, it seems to be overwhelming and endless. In either case, it’s always with you. It’s at your own peril if you decide to ignore your paralysis and just be “normal.”

Almost every health or safety decision you make turns on your own mental instruction. Only you, and maybe a therapist, can tell you what you are telling yourself. I used to tell myself, for instance, that health problems like sores would just come and go, just like they did in my pre-paralysis days. It has taken me many years to see even the slightest variation of health as serious from the outset and demanding immediate, sustained action. I had to hit myself on the head countless times before that message got through. Denial is a hard nut to crack.

I guess if you arrive at the point where you don’t rage or pout every time a health issue arises – and just think of it as your life, your particular wrestling match – you might be on the way to a less stressful existence. This, of course, is not an easy task. It takes constant vigilance, usually in the form of reminding yourself twenty times a day that this is your inescapable reality and you need to accept it. It’s like exercising a mental muscle. The more you do it, the stronger it gets.

Back to Sisyphus’s plight: if and when he finally embraces the notion that his struggle is eternal and out of his hands to change, Camus concludes, ironically, then "all is well.” And assuming he can do that – and we all can follow suit – then Camus concludes with this propitious leap in logic:

“One must imagine,” he says, “that Sisyphus is happy.”

© 2014 Allen Rucker | Like Allen on Facebook

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The Best Seat in the House:
How I Woke Up One Tuesday and Was Paralyzed for Life

Posted by ARucker on Mar 28, 2014 2:17 PM America/New_York