Out of Sight, Out of Sound
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.
I live in Manhattan, mainly because I need the public transportation. I live
alone in a building with a doorman, which makes me feel safer. I have a cane
now, though I don't use it much.
Sometimes, my brain tries to compensate for lost peripheral vision by
creating images. For a while, I kept a frying pan by my desk because when I was
at my computer, I would think I saw a man walking by the door out of the corner
of my eye. No one was there. I used to love going to the movies, but it's
tiring since I'm constantly scanning my environment. Still, I teach eight
Spinning classes a week — they're often in the dark, and I've memorized the
layout of each Spin room. I think my students would be surprised to find out
the person telling them to pedal harder can barely hear or see them.
I feel an urgency to do as much as possible while I can still see and hear
somewhat. I want to travel — lately, to Zanzibar and Mauritius and Tibet. And I
want to have a family. I'm torn between wanting to settle down before my
condition gets worse — it's like having another clock ticking besides the
reproductive one — and feeling too young and uncertain. There are issues with
having kids. Usher is inherited, and if I marry someone who carries the gene,
there's a 50 percent chance of passing it on to my children. And pregnancy
could accelerate my vision loss. Then I think about the fact that I may never
see what my children look like. But I'll get to touch them and smell them — I
think I'll know my children in a different way.
My doctors say it's possible that I will completely lose my hearing and
vision in just a few years. It's finally becoming believable. But I think I'm
ready to deal with it. I'll soon be a candidate for a cochlear implant, which
will require major surgery but could drastically improve my hearing. If all
goes well, I'll never live in total silence. But one of these days, I'll
actually start using that cane. I try to stay optimistic. At 19, I couldn't
imagine I'd have as much loss as I do now. But I'm OK. It's my life, and I
don't have time for fear.