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Out of Sight, Out of Sound


WebMD Commentary from "Marie Claire" Magazine

By Anna Jane Grossman

Marie Claire magazine logo

When she learned she would go blind and deaf before her 30th birthday, Rebecca Alexander didn't have time to be afraid.

There are some things in life you know will happen, but they don't seem real. When you're a kid, you know you'll grow up, but you cannot imagine what it will feel like. You know you'll eventually die, but you don't spend every moment thinking about it.

That's how I felt nine years ago, at 19, when a doctor told me I was going to be both deaf and blind one day. I was scared, of course, but when you've always seen and heard, you can't comprehend life any other way. Only in the past year have I begun to understand what complete silence and darkness could be like.

The problems started in sixth grade, when I couldn't see the chalkboard. I went to several ophthalmologists where I sat completely still through long tests with wires attached to my eyeballs. I kept thinking, all this just to get glasses? Eventually, the doctors determined I had retinitis pigmentosa, an inherited disorder where the cells in the retinas slowly degenerate. They told my parents I'd be blind by the time I was an adult.

The diagnosis came as my parents were separating, and a new disagreement between them arose: how to break the news to me. They compromised, telling me I'd have difficulty seeing at night. But when you're 12, what does that mean? The whole thing didn't seem like a big deal to me.

A year later, my mom noticed that when she called me and my twin brother from downstairs, he'd answer but I wouldn't. The doctor just said, "No 13-year-old girl responds when her mother calls her."

Then tests confirmed my hearing was getting worse, too.

Marie Claire Photo of Sign Language 1

In a weird way, it made sense to me that things were wrong. I could already tell I wasn't like my mother. She was flawless — even her singing voice and handwriting were perfect. I was sloppy. I lied. The diagnosis felt like proof of my inadequacy.

My family puts a lot of emphasis on being attractive. My mother taught us to be impeccably groomed at all times and well mannered, like mini newscasters — which, surprise, is exactly what my older brother grew up to be. But I didn't understand how I was supposed to be attractive and disabled.

As for my difficulties seeing, I was fine in small groups, like at home, where my brothers didn't treat me differently. But by the time high school hit, it was hard to decipher what I was and wasn't hearing and seeing, since I still thought I was catching everything. In reality, I was missing a lot; my teachers were always accusing me of daydreaming.

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