Michael: When we first met, you were, to put it kindly, not interested in science or health or, for that matter, history or politics. I would describe you then as something of a literary bohemian, very knowledgable about contemporary poetry and music and art, and generally aware of recent social and cultural events. But I'd have to say your disinterest in the world of science and technology bordered on disdain. That's all changed. I assume your interest in scientific ideas and discoveries is connected to your need to learn about what's been happening to your eyes.

Joel: Okay, so I was an artsy semi-ignoramus. Two factors, besides aging, inspired new intellectual enthusiasm: becoming legally blind; and achieving Internet and Web access to broader, deeper knowledge. I discovered an online forum, the RP List, where science professionals like Dr. Gislin Dagnelle of Johns Hopkins and Foundation Fighting Blindness information specialist Tom Hoglund contribute details about retinal degeneration and the efforts to analyze and cure it. My interest soon extended to the mechanics and neurology of vision, cellular biology, stem cell and gene therapy research, and more, abetted by another subscriber who generously compiles each Tuesday's New York Times Science News as a text file and distributes it free. But the lure of the Web is strong, and one thing leads to another, given enough solitude and time, which circumstances have afforded me in spades. Thus, a general erudition, however modest, beyond my youthful imaginings, in many areas.

Michael: So, your need to know about what was going wrong inside your eyes led you to scientific explanations, which in turn led to more and broader interest in science. Is that kind of knowledge--the understanding of how things work--of much practical value to you? Or is it mostly the pleasure of learning and understanding?
Joel: "Practical value?" You mean some way in which my interest in the causes and mechanics of retinal degeneration, and about research, could lead me to a cure or at least uncover palliative measures to slow down the progression of my RP and lessen its effects? It's not that I didn't have such hopes at first. But it wasn't long before I understood that the work toward finding a cure was advancing haltingly, due at least as much to funding shortfalls as to the complexity of the scientific challenge. And treatments such as vitamin therapy and nutritional supplementation turn out to be of questionable value. Regardless, becoming aware of developments in such areas as cellular biology,

Joel on his particular
pattern of retinitis pigmentosa

genetics and neurology has added to the store of knowledge that increases my understanding not only of my particular situation but of all living things. A large profit, cure or no cure.