Hello, Failure

Of all the enemies of literature, success is the most insidious

Sunday, February 01, 2004

Failure of the Day: What It Feels Like

There is a way that it is ominous, this demonstration of the active disease process in my body. It likes to remind you, in case it’s slipped your mind.

There is a way that it is fascinating, the numbness and tingling in my legs is not in my legs at all…it is caused by some weird neurological misfiring—it is more or less a hallucination of sorts. But it’s odd to feel something and feel it as plainly as you feel the chair under your own ass at this moment, and know that it is not really there. You can’t convince yourself of that, you just can’t. It’s like a kind of mental illness in the body. It’s like a dream that my legs are having.

Mostly though, it’s fucking annoying. The tingling is intense, especially on the bottoms of my feet when I walk. It’s like when your foot falls asleep, that pins and needles sensation, but it doesn’t hurt, the way that sort of does. And it’s a pointillist kind of numbness. I wish I could describe it better than that; but really, that’s just what it feels like. Imagine the surface of your skin made up of tiny points and every other one is numb. It’s not like I can’t feel anything when I press my hand to my leg, but still, half of the area is numb so my hand feels far away. It’s peculiar.

I want to describe these things because I do it a lot in my novel and I’m not sure it’s getting across. Certain of my more common sensations correspond to very specific metaphors in my head, and the metaphors came to me the moment I first felt the sensations so there is no other way for me to describe them, but I don’t know if they make sense to anybody else. I’ve had to tell dozens of neurologists that I can tell the difference between a regular headache and a migraine when it’s starting because a migraine feels like a capsule of pain being split open in my brain whereas a regular headache sweeps across the skin of my forehead in the same way that a flame laps a flat sheet of paper. They always look like they’re writing down my descriptions but I imagine they get together in underground neurologist bars and laugh: “Capsule of pain? Oh, that’s a good one. Last week I had a guy who said ‘free-floating island of alternating cold and heat.’”

It’s like that with MS; it makes poets of us all. We have to find a way to explain it—not to the doctors, they are merely the clinical historians of this disease—but to the witnesses, the family members and friends who can see only the reaction to something that is invisible and strange even to us.


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