Esquire, August 2007, page 105
What It Feels Like...to Not Feel Pain

What It Feels Like...to Not Feel Pain

By Perry Goldberger, 17, student

As told to Buddy Kite
Familial dysautonomia (FD) is a rare genetic disorder that affects the autonomic nervous system, which controls the ability to feel pain.

When did I become aware that I felt no pain? That's like asking someone without FD when they became aware that they could feel pain. It's just how I am. I was lucky. My doctor had seen it before, so I was diagnosed when I was two weeks old.

 Some places on my body I don't feel anything, but other places I'm more sensitive. My feet, my armpits. I am ticklish there. It's uncomfortable.

You can imagine that I don't do much hammering. But I did use a hammer once in art class and was very careful. If I did accidentally hit my thumb, I'd be scared, because I know that it would injure me. I'm not sure how much I would feel, but I would feel something -- pressure, maybe. When I go to my specialist for my annual checkup, they check my sense of feeling with a few different tests. I close my eyes, and they poke my feet and hands in different places with a thumbtack, the sharp side and the smooth side. I have to determine which side they're using without looking. They also have a machine with a knob that can get freezing or burning hot. They set it to different temperatures and again test how I feel on my hands and feet. Some I get right, some I don't.

I've been cut and not realized it. My sisters have been the ones to point out the bleeding. I've gotten stitches many times. Some kids think it's a good thing to not feel pain, but pain is how we protect ourselves when we're hurt. (But at least I don't feel shots at the doctor.) I could break my leg and not feel it right away, but the stress on my body would eventually make me not feel well. There have been times where we've had to go to the doctor to check if my hand, foot, or leg was fractured or broken.

Also, I can't produce tears, so my eyes are always dry. I have to take eyedrops -- in the mornings and between every class. At night, I get ointment rubbed around my eyes and then cover them with Saran wrap to keep the moisture in. I once had an abrasion on my cornea. People say it's one of the most painful things.

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