Predicting the Future at the International Symposium on Usher Syndrome

July 2, 2014

by Mark Dunning

When Bella was born she was bald as a cue ball. It took almost a year before she had any hair. I couldn’t imagine her with hair. That first year we went to a support group for parents (for deafness, not baldness). I was asked by the facilitator what I wanted most for my deaf daughter and I said hair. I mean, she was bald. I knew she would get hair eventually. All kids grow hair eventually. She had just been without it so long that, try as I might, I couldn’t envision a day when she was anything other than bald as Pitbull (The musician, not the dog. The dogs aren’t bald at all).

 Bella was born with vision. She has had it all her life. I can’t imagine her blind. I know it might happen eventually. All people with Usher eventually have vision problems. It’s just that, try as I might, I can’t imagine her as anything other than sighted. 

 At the International Symposium on Usher Syndrome, I will get a glimpse at the future. I will meet adults with Usher syndrome and many of them will be blind. There will be canes. There will be guide dogs. There will be sighted guides, tactile, close vision and platform interpreters. Bella won’t need any of it. Someday she might and that is a scary thought. No, that’s not right. It’s THE scary thought. Nothing else, barring some unforeseen tragedy, comes close. 

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 Blind people don’t know what is on the table. I had never thought of that. The first time I went to dinner with a blind person he asked me to describe the table to him. He wanted to know if there was a water glass and if it was full. He was my age, a well-respected writer, witty, intelligent, physically fit. He had tattoos and a shaved head and an earring. He looked like a musician. He needed help finding the water glass.

When dinner came, he asked me to point him to the mashed potatoes. He didn’t want to feel around on his plate and stick his fingers in the gravy. It made sense. It was just strange to give directions on where to find mashed potatoes.

We were staying at the same hotel. After dinner I walked him home. Two grown men, each straight, each married, yet he held on to my elbow and walked close. It was uncomfortable. I led him to his hotel room. The room was dark. I realized he couldn’t see the light switch and offered to find it for him. He laughed. Oh yeah. Stupid question. Then he said good bye and walked in to the room. Just wandered away into the darkness.

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Bella looks forward to the family conferences. This is her fifth one. She makes new friends every time and gets to see old ones that live in other parts of the country and the world. She also sees lots of adults with Usher syndrome, adults with guide dogs, adults with canes. I have asked her if it frightened her to meet these people. She always responds the same way: 

“No. That’s not going to be me.”

All people with Usher eventually have vision problems. It is going to be her.

When I was fifteen years old I was never going to be like my father. I was never going to prefer a nap over a swim in the pool. I was never going to groan when I stood up. I was never going to complain about bills or plan my day around mowing the lawn. I was never going to be middle aged. 

Bella feels the same way. She is always going to have boundless energy and few cares. She is never going to be old. 

She is never going to go blind. 

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I forgot to mention that I had a wonderful dinner. It was one of the most enjoyable, memorable evenings of my life. There were four of us there. I knew the other two guests pretty well but I had never met the man with the shaved head and the tattoos and the cane. We all hit it off right away. He was charming and funny and liked to laugh. Fingers in the gravy was a wisecrack, not a fear. We drank wine and told stories and laughed loud enough and often enough to annoy the people at the other tables. 

When dinner ended we were tipsy. We said goodbye to our companions and made the irrational decision that the two of us could find the hotel. I was drunk. He was blind and drunk. We couldn’t remember how we had gotten there. I had never been a sighted guide before. I walked him into lamp posts and distinctly remember him falling over a hedge. It was terrible and wonderful at the same time. We laughed at every mistake. I learned, slowly, unsteadily. We made it home. He wandered in to the darkness of his hotel room. I saw a light at the end of the tunnel.

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Some of Bella’s friends have guide dogs now. They are older than Bella, becoming adults, graduating college. They worry about finding jobs and paying bills and going blind. 

When they see Bella, they talk about dogs. Bella loves dogs. She wants a dog of her own. They talk about family. They talk about Seattle and St. Louis and Portland and swimming pools and zoos. They laugh. They smile. They are young adults with Usher and Bella wants to be just like them.

That’s going to be her.

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At the International Symposium on Usher Syndrome next week I am looking forward to seeing a lot of friends. Some of my best friends are blind. Who would have thought? I don’t think twice about describing the table setting for them or telling them where to find the mashed potatoes. Those things weave in and out of dinner conversation like ‘pass the salt’ and ‘you should try this.’ 

I had never heard of Usher syndrome when Bella was diagnosed. I never thought my daughter would be born deaf, never thought she would go blind. And I absolutely never thought that I would have so many friends, real, close friends, with Usher syndrome. 

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I am decidedly middle aged. I prefer a nap over a swim in the pool. I groan when I stand up. I complain about bills and plan my day around mowing the lawn. I turned out to have many of my father’s traits, good and bad. And yet I didn’t grow up to be my father at all. 

The future will be there at the International Symposium on Usher Syndrome. It will be there, but none of us will truly see it. Oh, there is hope for people with Usher syndrome. There is hope in the research. There is hope for real treatments real soon. And if you take the time to make friends, you will see that there is hope in a life lived with Usher syndrome. 

But the only certainty about the future is in those words Bella says when I ask about her fears: “That’s not going to be me.”

She’s right. She will definitely be something else entirely.

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