The Two Kinds of Decay

Paralyzed

A spinal cord injury can paralyze you in a moment, but the paralysis of my disease is a long story. Worse, then better, then worse, then better. For years.

A woman rides her motorized chair up a ramp and onto a stage. Ten feet away from the podium, she parks her chair, gets up, and walks a few steps, very slowly, to accept her award.

What a sickening prop.

But people forget a woman in a chair is strong enough to walk a few steps each day and has saved this day’s steps for the acceptance of her award.

Chair or no chair: a binary relation. But the vicissitudes of moving the body around are infinite. You never know what a person in a chair can do.

I saw two young women at a lecture once, one of them in a wheelchair that looked like a piece of expensive Italian furniture. Her girlfriend sat down and said You want to do a transfer? and the girl in the chair said Yeah and maneuvered her chair next to the bank of auditorium seats, placed her hands on the arms of the first seat, and swung herself into it with her ropy upper body. Then she reached over and folded up her hot little wheelchair.

Other than the ones I used in the hospital, I never got my own chair. When I couldn’t walk I stayed in bed, because it was always assumed I’d get better soon, and the chair was for people who were done forever with walking.

I was afraid of the chair. It would indicate I wasn’t going to get better. And my doctors didn’t want to believe that any more than I did.

Chair or no chair: a binary relation. Bad or good, sick or well, hopeless or hopeful.

This is how I described paralysis to my friends: Sit down right next to me on a bench or a sofa, me on the left, our four thighs in a row. Lift your right thigh and put it back down. Then the next thigh over, lift it and put it down. Then the next thigh after that.

That feeling of trying to lift someone else’s thigh with your own mind is how it feels to be paralyzed.

Though my worst relapse paralyzed me from the thighs down and weakened me everywhere else, most of my paralysis was always in the process of getting either better or worse. The state of my health changed daily.

During a week of plasma exchanges, I’d be able to move a little more each day. That’s how quickly the myelin regrew. If I were waiting at home to get sick enough to be readmitted to the hospital, I’d be able to move a little less each day. That’s how quickly the myelin was destroyed by my anxious blood.

My feet were often completely paralyzed, because they’d go first and weaken the most. To this day, scratching my arches, even lightly, is excruciating, but the toes and the rest of the sole can take pins. There was some permanent damage, either to the axons or to the myelin or both. Now my feet are both hypersensitive and hyposensitive.

I was always being moved around, given physical therapy and having my bedsheets changed under me, so most of the big parts of my body got at least a little movement each day.

But the toes, when one is lying down, do not get a lot of attention. After a week or more with paralyzed feet, my toes needed to be moved right away. I couldn’t bear the stillness anymore. It was like a full bladder. When my parents visited that afternoon, I asked my father to move my toes. He grasped one set of toes in each hand and bent them up and down and all around in a bunch for a few minutes. And either he or my mother did this every day they visited until I was strong enough to sit up and reach my toes myself.