Seeing Other Solutions

Q. You seem to work as much like a journalist as a doctor, immersing yourself in people's lives, visiting them at home, even traveling with them. That can't be typical for a neurologist.

A. It's not typical, but it's not unheard of. [Jean] L'Hermitte — a great neurologist — would advocate accompanying patients to bistros. With Lilian, the pianist, for example, I had been seeing her and visiting her for three years. Although I kept detailed notes — I started seeing her in '99 — I don't think I started to think of a piece till 2002. I don't go in as writer looking for material, or as a scientist wishing to do an experiment. I go first as a doctor who's called in to deal with a problem, and the other things may come later.

Q. For years, you thought that your own topographical and face blindness was at one end of the spectrum of normal variation.

A. I'm still uncertain where normal variation ends and pathology begins. Face blindness, although it may have comic aspects, may also be catastrophic. People may not recognize their own children. And it's not uncommon. Face blindness affects about 2 percent of the population. It's almost unknown in the medical profession and not well-known to the general public.

Q. You write that "a significant part of what is variously called my 'shyness,' my 'reclusiveness,' my 'social ineptitude,' my 'eccentricity,' even my 'Asperger's syndrome' is a consequence and a misinterpretation of my difficulty recognizing faces."

A. It may be that I have all the above conditions in addition to face blindness. In my case, I think it has accentuated a tendency to solitude and reclusiveness. But in other people, like Chuck Close, the artist who has face blindness, he tries to make contact with people, to get into conversation. He usually starts by saying "How's the back?" because he says he can safely assume that almost everyone has a back problem.

Q. How have you adapted to these neurological deficits?

A. Probably by limiting both social life and travel, unless I'm with someone.

Q. Your description of your bouts with ocular melanoma is vivid and terrifying. What were the emotional effects of your disease?

A. In the first three weeks, while I was awaiting radiation, I was very frightened for the eye and more generally about my life. Later, when it seemed to have calmed down, I was reassured. But then it went bad again. There was a bit of tumor near the fovea that had started to grow. And so it was finally necessary to laser that and to sacrifice central vision. I had dreaded losing central vision. [But] I was getting such gross distortion of the eye, like elongated people and puffy faces.

Q. How did you deal with that?

A. I would close that eye, or wear a patch over it. It had become very troublesome, and it was sort of a relief to lose central vision. What continues to bother me quite a lot is losing stereo [three-dimensional] vision.

Q. And since then?

A. Again, I've adapted. I live independently, I walk around, I go out. But problems are lurking. I have to use a stick; I can't judge curves, I can't judge stairs. Once or twice I thought I was on the bottom of a staircase and I wasn't. I can't trust my eyes. I seem to live in a visually cluttered world with no space between objects.

Q. Have your eye ordeals affected your attitude toward medicine?

A. Yes. I was greatly impressed with the real patience and dedication of the doctors, the ophthalmology department, at Columbia. They did everything they could to get things right. But in the face of an incorrigibly oozing retina, I think medicine and surgery ran into their limits.