Love and Other Challenges

A Typical Day

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.
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?
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.
Michael: So you spend more time alone and, I assume, indoors. Let me pry a little further. I know you like good food, and that you're a good cook. I'd think that both cooking and getting out to restaurants would be more difficult now. Do you do a lot more of one or the other?
Joel: I still prepare my own meals, and only go out to eat socially. There are changes, sure. Fewer new recipes tried on a whim because browsing through my cookbooks is impossible. Also, for safety and convenience, I cook less on top of the stove, and more in the oven and microwave.
Michael: You recently took up with an old friend: the steel-string guitar. Does that have something to do with the loss of vision?
Joel: Sight loss wasn't my main inspiration for getting a guitar again. It was about aging. I just wanted to recapture the blues and folk music I learned in my twenties. I can't see my fingers clearly on the frets, and have to grope around a bit, but it's coming along.

Michael: One more thing: you've been a bit of a gym rat at times - do you still keep in good physical shape?

Joel: I work out at home now, three times a week. Stationary bike for aerobic exercise, plus free weights and situps. I lost patience with the stress and time that commuting to the gym by bus was costing me. And I don't have to adjust all those machines by feel anymore.
Michael: Any other significant change in how you do things?

Joel: The most profound daily adjustments don't involve the practical challenges I can master alone, but those I can't. Having to ask for help constantly. No more slipping through a supermarket to grab a few items, exchanging greetings with the express lane cashier, and getting right back out in the world again, because I can't see the products clearly, can't read the labels. I have to locate the shift manager, get someone assigned to accompany me, and have an interaction I'm not always in the mood for. To shop for clothes or attend a concert, I have to find the appropriate and available friend. There's a lot of delayed gratification, feelings of helplessness, and fear of excessive dependency. Much balance is required, sought, and sometimes even achieved.

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