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Out of Sight, Out of Sound


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.

Marie Claire Photo of Sign Language 3

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.

I learned sign language and was surprised I enjoyed it. If you don't know how to do it, you almost feel like you're missing out when you watch people sign to each other. After graduating from Michigan, I went to Columbia University for two master's degrees in public health and clinical social work. Now I'm a social worker at a school for the deaf, and I organize seminars at the Foundation Fighting Blindness. I'm also developing a private practice as a psychotherapist treating eating disorders.

Still, Usher is a difficult subject to bring up, especially on a first date, although most of my boyfriends have been supportive. I recently dated someone who kept a cup by the side of his bed for my hearing aids. My last boyfriend let me teach him sign language, and we'd use it all the time for fun. It was our own private thing.

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