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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.

The Devil's Workshop

For the last three and a half weeks, I have been as idle – bed-bound idle -- as at any other point in my entire life. I was forced to do nothing by a doctor, of course. I didn’t just choose to be a slug. Many of you are much more bed-centric than I am and are much more expert on the long term effects of bed life. To me, a novice, this protracted period of physical stasis was at times depressing, frustrating, oddly comfortable, and in the end, enlightening.

On May 1, I entered the hospital for skin flap surgery on an unhealable wound on my right hip. It was a delicate procedure and an even more delicate recovery. I’ve had this infuriating wound for two years and had no intention of messing up the repair job and returning to square one. So, as my plastic surgeon dictated, I stayed in bed full-time and protected that wound like a mother bear. I didn’t get out of bed at all for a week and a half and remained in bed with small breaks for two weeks after that. Not by choice, I was given the experience of being the exact opposite of how I see myself: active, vibrant, or as my grandmother used to say, “up and doing.”

In general, more than two days in the hospital is wall-climbing time for me, especially if I’m not that sick. Here I was, staying in bed for days on end and not being the least bit feverish, in pain, nauseous, or otherwise ill. I had a skin transfer on my hip that I couldn’t feel but knew was there and knew that doing nothing was the best treatment. Rule One, I came to learn quickly: don’t cheat. Everyone I knew who had gone through a similar experience repeated this mantra over and over again. It’s easy to cheat in this situation. You make a simple transfer for a quick spin around the hallways and you’ve sheared off part of the graft. I know. I’ve cheated before or I wouldn’t have been in this situation in the first place.

I went through some early mood shifts, from depression to ceiling-staring to complete lassitude. Then, a few days in, another shift: your body, followed by your mind, starts to adjust. It’s adjusting to being confined, akin to jail time. First you go stir-crazy, then you realize you can handle life in an 8 by 10 cell and start decorating the walls. You become habituated to a very structured routine – 4 am, get a shot, 7 am, meet the new nurse, 8 am, breakfast, 9 am, meds, 9:05 am, sleep until lunch.

Paralysis experts have a term for the tendency of an inert body part to stay inert: learned non-use. If you stop using a muscle group like your hamstrings, your body comes to accept this as normal and the muscles become rigid and unpliable. If this goes on for an extended period, there may not be a way back. Contracture is a perfect example of this.

When that learned non-use extends to your whole body, both the paralyzed and the non-paralyzed parts, then your whole system changes. Your breathing gets shallower, sitting up makes you dizzy, and your need for stimulation weakens. Soon the outside world starts to fade away and you enter a wiggy state of mind. You lose track of what day it is and if the CP doesn’t raise the shades, you lose track of day versus night. You simply disconnect from reality. In some ways it’s a relief. You can leave a lot of problems behind when you shut that door to your hospital room.

You finally turn a dark corner – you become addicted to inertia. In the same way that a runner becomes addicted to running after a constant routine, you get hooked on torpor. The runner craves the endorphins that produce a robust sense of well-being. The bed addict craves quietude. It’s not exactly the kind of quietude that you might get meditating in the woods, but it’s the quietude thrust upon you and it is habit-forming.

If someone keeps telling you that this mode of living, or half-living, is medically necessary, you probably won’t protest too much. You’ve been given permission to vegetate. But once you break the pattern, you are shocked to realize how low you have stooped. The only time I really broke down in this whole ordeal was getting into the car to ride home. “What is going on here?” I asked myself. “Both my mind and body have turned to mush!”

I didn’t have to go to an expensive detox center in Malibu to shake this addiction. I just had to get out of that hospital room and move around a little. It was a really nice hospital room, by the way, a kind of double-wide VIP room where celebrities could hide out after a face lift. It had all the amenities of the Hampton Inn, plus a nifty digital blood pressure cuff.

Now I am acutely aware when I spend an extra fifteen minutes in bed playing iPhone solitaire. Torpor, I now know, lurks around every corner, just waiting to entice you into its deadly trap. Don’t give in! Fight back! Move, move, move!

And stay out of hospital rooms.

© 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 Allen Rucker on Jun 2, 2014 4:14 PM US/Eastern

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