Eye Health Center

Out of Sight, Out of Sound

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I got my first hearing aids in high school, but I would only wear them with my hair down, and only in history class because the teacher mumbled. At least I had the built-in coolness that came with being a twin. I was good at sports (so long as it wasn't a game with a small ball — those were becoming hard to see). And yet, I was starting to feel I didn't quite belong.

One thing I did to fit in was drink. Usually, I only drank beer — and not an abnormal amount for a kid that age. But one night, a month before I was supposed to start at the University of Michigan, I sat in a playground with my twin brother, our friends, and a bottle of vodka. I got so drunk that my brother had to carry me home. Trying to walk to the bathroom in the middle of the night, I went out the bedroom window instead and fell 27 feet to the stone patio below.

It's hard to say if the alcohol or my eyesight caused the fall. I broke nearly everything and was in a wheelchair for months. The doctors were amazed I'd survived — although they seemed certain I'd never walk normally again. I did four months of nonstop physical therapy.

Around the time I went to Michigan a year later, my hearing took its first big dip. My family learned to whistle to get my attention. Still, I was resistant to wearing the aids, despite needing them more and more.

On dates, I was terrified of guys finding out I had disabilities. If I was with one who didn't know I had hearing aids, I'd slip them out while we were kissing and put them under the bed.

Worse yet, I started getting "doughnut vision," which meant I could see peripherally and straight ahead but not in the doughnut area in between.

When I started college, I understood I'd eventually lose my eyesight, but I thought my hearing would remain fairly stable. Then an otolaryngologist diagnosed me with Usher Syndrome, a genetic condition that affects about 20,000 people in the U.S. It causes people to go both blind and deaf, either at birth or progressively. I hadn't considered that my vision and hearing losses were related and that I could — and would — lose both entirely.

Maybe I was seeking control in a chaotic situation, but soon I was wrestling with anorexia and exercise bulimia. I'd work out four to six hours a day until I went into rehab for a month after graduation. At least I was just as compulsive about my schoolwork: I asked other people to take notes for me. In one class, a girl had live closed-captioning at her desk; I read over her shoulder. I did well, graduating with honors.