Michael: I thought it would be good to begin with a description of your day to day life. But first, can you briefly portray what you see, and don't see, when you look around on a well-lit day?

Joel: Even in bright light, it's as if I'm looking at the ghostly stage set of a world through the gauzy inner curtain of a theater. It appears that I'm seeing a normal, if blurry picture, but things are actually missing all over, even directly in front of me. When I talk to someone, his or her face is a featureless shadow. When I look at a printed page or the label on a can of soup, I may see only blankness. Because I still have some sight from the peripheral edges of my retinas, I see a full-screen vista, instead of having tunnel vision, which is more common with RP. So I carry a white cane mostly to warn others to be careful of me, as I can still see the sidewalk as long as I don't look directly down at it.

View a simulation of Joel's deteriorating vision

 

Michael: How does a typical day now compare with a typical day, say, twenty years ago, in terms of how you do things that are for most people highly vision-dependent?

Find out how Joel uses
audio technologies.

Joel: It's been a continual process of adjustment. Sometimes, as with driving, giving something up has been my only option. After a near-tragedy, I sold my car, turned in my license, and learned to ride the bus, which was hard for me, both in practical terms and psychologically. When I could no longer make visual sense of movies, I stopped going to see them. On the other hand, I've found adaptive strategies for many things. I can order a great variety of audio literature and periodicals from the Braille Institute Library here. For using my computer, including going online, I have the screen reader, Jaws, to tell me what's happening. And I do the best with what's left

of my sight, as well as bring my memory and other senses into play to compensate where possible. Slow going, sometimes, but a lot better than being incapacitated.

Michael: Apart from the things your disability has forced you to give up, do you feel like there have been any major shifts in your interests and activities?

Joel: I have a new appreciation for medical and biological science. Disease processes, cellular biology, gene therapy and stem cell research. Otherwise, I still care about all the same things as before. Music, for example. I'm trying to devise a cataloguing and storage system for finding the CD's in my ever-growing music library without being able to read the CDs' "jewel boxes." But all daily activities, from computer use to grocery shopping, have become adaptive challenges. And not driving has turned me into more of a recluse than I ever meant to be. No more flurries of errands, no more spontaneous outings, alone or in good company, to have a cappuccino and a stroll at the beach, and, unless I can recruit a friend who drives (which is everyone I know, but still) I miss a lot of good cultural events that aren't convenient or even accessible by public transportation.