The Two Kinds of Decay

The Wrong Symptom

The nerve damage associated with my disease is supposed to begin at the toes and move upward, as if you’re sinking in invisible, numbing quicksand.

Or sometimes it begins at the hands and moves up the arms to the torso — as if you’re standing in the quicksand on your hands.

During one of my hospitalizations, after being pricked with the pinwheel — a metal tool resembling a pizza cutter — I reported a spot of numbness on my abdomen. It was, coincidentally, about the size of a slice of pizza. The numb spot was surrounded by flesh that could feel. And that symptom wasn’t clinically normal for someone with my disease.

There was no diagnostic explanation for that numb spot, and so the following explanation was given: while there may in fact be a symptomatic area on my abdomen, the symptom I was reporting was not the correct one.

In my disease, the numbness starts distally, in the toes and fingers, and progresses proximally, toward the trunk. In my disease, there are no numb spots on the trunk. Those neurons aren’t stripped of their myelin until the arms and legs go numb first.

After considerable discussion among the doctors and their entourage of students, it was declared that I had indigestion, which was common in patients who had been lying on their backs for days or weeks as I had, and it was declared that since I was used to reporting all symptoms as numbness, I was feeling heartburn and reporting it as numbness.

If I broke a toe or lacerated my palm, it was apparently assumed I’d report the pain as numbness because I’d become accustomed to calling my discomfort numbness.

A doctor listened to my belly through his stethoscope and declared gastric unrest, though there is always some unrest in the bellies of the living.

I was prescribed a few tablespoons of liquid antacid. I drank it and the symptom abated a little, maybe.

And so the sensory changes had been caused, of course, by the antacid, just as the symptom had been caused by indigestion, and just as the indigestion had been caused by my having lain on my back for so long.

But not really.