Usher’s Syndrome, Hearing/Vision Loss, and Humor

By Amy Bovaird / LipreadingMom.com Guest Blogger

“I have Usher’s Syndrome?” There! I finally knew what I was up against. I’d suspected hearing loss for awhile now but wasn’t in the United States long enough to follow it up. I was too busy having adventures as a globetrotting English teacher. Or should I say “globe-tripping” because I also suffer from Retinitis Pigmentosa, which is a progressive, hereditary vision disorder that usually results in blindness.

Three years ago, I was diagnosed with Type III Usher’s Syndrome—progressive hearing loss—which sometimes accompanies Retinitis Pigmentosa in adulthood. Simply put, faulty nerve endings stop lining up and touching. Over time, the nerve endings disintegrate from not connecting properly; hearing loss results-just as Retinitis Pigmentosa progresses. In my case, my vision loss occurred gradually, thus enabling me to continue my exciting teaching career. My hearing loss has been much more rapid.

When I returned to the United States, my first order of business was to find a job. Before I knew anything about Usher’s, I set off for a prestigious job interview at an Ivy League college. I practically memorized their website and drove several hours to interview in person. I arrived early and took a seat in the office. A woman was buzzing around getting coffee. She turned to me and asked me something. I heard “early…some coffee…you…?” She must be telling me it’s early (it was 8:30 am) and asking me if I want some coffee. “No, thank you.” I responded, not wanting her to go to any trouble.

Guess what? I guessed wrong! She came into the room a half an hour later. One of two interviewers, she gave me a furious look and said, “When I came in for my coffee, you said you were not here early for the interview.” I apologized but the interview went from bad to worse. I went from a glowing letter of “we-can’t-wait-to-meet-someone-with-your-qualifications” to no job offer. They didn’t even notify me that I didn’t get the job. My friends still laugh at that painful story, and I do, too, now.

Denial is hard to get past. Have you ever just pretended like me? Later I realized my second language students often pretend when they don’t understand. I could see why I wasn’t hired.

But, I recovered and a little while later, landed jobs teaching Spanish to high school students at a local Christian school and a literature course to college students. As I prepared for my fall classes, I met with a counselor at the Bureau of Blindness and Visual Services. I found out I had lost a significant chunk of vision. At the same time, I had my hearing tested and was diagnosed with Usher’s Syndrome. The state would issue me wonderful, very compact hearing aids, which helped but didn’t completely solve all my hearing problems.

When I look back at those first teaching weeks back in the United States, I recall a clumsy teacher. While trying to monitor my students, I kept tripping over their books. This was my pre-hearing aids era, so I also faked hearing some of the quieter students. In my college classes, I assigned students to read passages aloud. Once a student read a very long passage the student before just read. I didn’t hear her well enough to stop her. That was my life back then, trying to mask my dual disabilities in the classroom.

However, I finally braved up and confessed my problems to helpful supervisors, which made all the difference in the world. We rearranged the classroom so I could hear and monitor their language skills better. I also shared the difficulties I had with all my students. Together, we made rules to help me, such as keeping aisles clear. I tried hard to be honest about what I didn’t hear.

Being a teacher requires a lot of strategic work but if you love your job and have supervisors that believe in your skills, the problems can usually be overcome.

In my case, I try to keep a sense of humor about me. When my students are laughing, they’re laughing with me and not at me.

Join me for more of my adventure at AmyBovard.com.

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8 thoughts on “Usher’s Syndrome, Hearing/Vision Loss, and Humor

  1. I have a close friend who suffers from both R.P. and Usher’s. The irony is, all his life he’s been a cinema fanatic – just like me. It’s tragic that of all that this individual could lose, his vision and his hearing are the ones to go. I often think that if there is a Creator, she has a really dry sense of humor.

  2. Pingback: Meet My Friend, Wendy, Who Is Going Deaf and Blind | Lipreading Mom

  3. I have started blogging myself about Life with Usher’s, I have Usher’s type 2 and wife has Tourette’s so our story is interesting or at least that’s what I hear! I enjoyed reading your story, though it doesn’t give me hope, I know that was not the intention of the post. It was still a good read anyway. http://www.usherssyndromelife.com

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