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Ready for the Spotlight: Rebecca Alexander Shares Her Story of Living with Usher Syndrome

Rebecca AlexanderFive years ago, when Rebecca Alexander appeared on The Today Show with her brother Peter, she already had quite a tale to share. Nearing 30, she was single, living in New York City and working as a full-time psychotherapist and part-time spinning instructor. She also had Usher syndrome, a disorder that causes both hearing and vision loss—and which she’d mostly kept under wraps.

After the show, “a literary agent asked about writing a book,” recalls Rebecca, whose parents, Terry and David, are national trustees of the Foundation Fighting Blindness (FFB). “And I thought, ‘I don’t know what to write about, or that anyone would care.’”

She needn’t have worried. The just-published memoir Not Fade Away proves Rebecca has plenty to write about. And next week, she’ll launch a book tour by appearing on three TV programs: The Today Show (Sept. 15); The Meredith Vieira Show (Sept. 16); and MSNBC’s Morning Joe (Sept. 17). Fortunately, I was able to chat with her earlier this week.

How have you changed since that first Today Show appearance?
You don’t know how you’re going to respond to more vision or hearing loss until you’re faced with it head-on. And, like others, I struggled with showing what might be perceived as weakness. So the big difference is, I finally realized not using a cane was working against me. Using it, I quickly found that a) I walk a lot faster and more confidently and b) people sort of get out of my way.

Being single, especially in New York, it’s not easy to use a cane and feel like, “OK, this will encourage someone to ask me on a date.” But I’ve found that the more comfortable and confident I’ve become with my own circumstances, the more comfortable people are around me.

This morning, for instance, I had an intense fitness class with 12 people. At the end, I said, “You know it’s a great workout when your hearing aids start to turn off because you’re sweating so much.” Everybody laughed, because they know I have a hearing aid and a Cochlear implant, and it’s just part of me. It feels good to be in an environment where I’m not hiding anything.

What is your eyesight like?
I have donut vision. I have my outermost periphery still, which you can’t really use. And out of 180 degrees, I have about 10 degrees of central vision.

You write that your energy is focused mostly on day-to-day living, and that you allow others who support you to focus on research advancements.
With Usher syndrome, retinitis pigmentosa or any other retinal disease, if you were to worry constantly about going completely blind, or blind and deaf, it would be too overwhelming. You have to deal with what’s in front of you.

Years ago, before coming to terms with this, I had an eating disorder and was trying to be perfect, physically and academically, so nobody would sense there was anything, quote, wrong with me. If I knew then I was going to be as visual- and hearing-impaired as I am now, I would have thought, “Oh, my God, I’d rather die.”

And, yet, I’m 20 times happier now than I was then. In having made it through each stage of hearing and vision loss, I now know that, whatever the next stage is, I’ll make it work.

That’s because I have support—not only family and friends, but a network, like those I’ve met through FFB. It’s very difficult to get a diagnosis like this and, all of a sudden, throw yourself into the world of the deaf and blind. But the best thing is to reach out and network, and access all the resources. The more invested you are in what’s out there, the more you get back.

Dr. Jacque Duncan, your longtime ophthalmologist, is also chair of FFB’s Scientific Advisory Board. What do you find special about her?
I call her Jacque, for crying out loud! She’s like a member of the family. She knows the science inside-out, but she’s also very compassionate. Years ago, when her team got this new retina-testing technology, they were learning how to use it, so I had to be tested more times than usual. She profusely apologized. I said, “You know what? It’s not a problem.” I was so grateful that they now have this technology, and she wanted to get it right. She has been so giving and caring, I was happy to help further the research.


14 Responses to 'Ready for the Spotlight: Rebecca Alexander Shares Her Story of Living with Usher Syndrome'

  1. Therese Blesi says:

    I too have Ushers and have no idea what all free resources are available to me. I worked almost 30 years in schools as a teachers aide and copy room manager. I am not working now but do want to find a job that fits me. I am 57 years old, I would appreciate any info offered. I will watch you on the tv shows this next week!!!!

  2. Bill Settle says:

    I have RP, since 1999,left my job in 2004, since THEN, my vision has STAYED the same, WITHOUT getting any worse. I’m just wondering how common is this? I was told in 99, that my vision would eventually get WORSE and turn into tunnel vision and prob. TOTAL blindness. by the GRACE of GOD, it has NOT.
    I’d love to know what or when to expect it to get REAL BAD. THX

    • EyeOnTheCure says:

      Rates of disease progression in RP depend on multiple factors including both genetic and environmental factors. Disease progression can vary even in family members with the same gene mutation. Now that genetic diagnostics is becoming more widely accepted, scientists are able to compare the genotype (gene mutation) with the phenotype (clinical features) to try and gain insight into disease progression. As a first step, you may want to try and obtain a genetic diagnosis. For information on genetic testing, please visit this link: http://www.blindness.org/genetic-testing

    • Johanna says:

      Bill, for some reason I felt the need to respond to you. I hope what I have to say is of help.

      My dad had RP. He worried about it since he was diagnosed with it as a child. His mother worried, my mother worried, we kiddos worried. It consumed us all in one way or another every day. He died of an unexpected heart attack at 61. It was unbelievable. If we had known that would happen we would have certainly worried more about his fatal heart attack on the horizon than his RP. You never know. He was an amazing dad because he was positive and loving. He was all the dad I needed and more even though his eye sight wasn’t the greatest. Enjoy your life. Be happy. I know RP is consuming, but things could always be worse. By the way, his doctors told him he would be blind by 40. At the time of his death he read daily with visual aids, knew it was me when I walked in the room, and could see his grandchildren’s faces. His central stayed with him as his peripheral faded. Take care of yourself. God bless.

  3. Molly Corum says:

    Thank you for creating more awareness!!!!!

    Love ya USHER / COCHLEAR IMPLANT SISTER !!!!!!
    Molly Corum.
    RIGHT Activated 1995 and LEFT done 2006 !!!!!!!!!!!

  4. shirlee says:

    I have Fuch’s Dystrophy and
    Low vision and possible transplant surgery shortly I would like to hear from others that have had this surgery .
    and what their experience has been. Thank you.

    • EyeOnTheCure says:

      Fuch’s Dystrophy affects the cornea. You should see an ophthalmologist with expertise on the cornea as there are some helpful treatments available.

    • juliacanham says:

      I have fuchs dystrophy and had struggled since 1976 with paim and problems I also have glaucoma and macular problems at first nothing coild be done because glaucoma pressure to high, however in 2000 I had my first cornea graph and 2001 the second eye was done it has made things more comfortable and had improved vision slightly however \i now have cataracts which have to be removed, this might cause a problem to graph, but consultant says he will either do aother graph or repair on both eyes if necessary after, but I was really worried about having graphs at first but feel it was the best move I have ever made.

  5. Dan says:

    Hi Rebecca
    You’re very brave for doing as you are on so many levels. well done. I have usher 2a and though my hearing is stable I share similar approaches to managing the vision loss.

    I too have been a much happier person since diagnosis which speaks volumes for how we as people approach mentail health issues more broadly..
    I feel fortunate to have had a good result with some herbal supplements which you try when desperate. I’m 35 and just started playing ice hockey, imperfectly but fingers crossed things keep improving.

    Best of luck and stay as impressive as you are.

    Dan

  6. Jonathon says:

    I also have RP at 22 and its difficult to deal with at times just because of the psychological effect the disease brings.

    I am looking up information every so often and I find a lot of great trials/tests currently occuring.

    If you have RP and would like some more information, I would suggest Dr. Henry Klassen. He has been working on a couple trials for RP.

    http://today.uci.edu/news/2012/09/nr_cirmklassen_120906.php

  7. Carol says:

    Rebecca,
    I’m reading your book right now and I’m finding it so inspiring. I also have RP and I happen to have two kids: Rebecca 17 and Alexander 15.

    Thank you for sharing your story it has helped me a lot. I’m trying to work up the courage to use my cane and you are helping me.

    Stay inspired and share your joy with everyone.

    Thank you!

  8. You are all so inspirational! Please do check out the Usher Syndrome Coalition website at http://www.usher-syndrome.org . It has the most up-to-date information on Usher as well as a registry. Researchers are ready for clinical trials, but they need people with USH to participate. The registry is confidential. You decide if you want to contact them. Ex.Dir. Krista Vasi is very helpful.

  9. Rachel says:

    I have ushers type 2. I am profoundly deaf and have night blindness and peripheral vision loss. I often feel all alone because I am the only deafie in the family. My mom tries to help but it is hard. Unlike miss.Alexander I can’t hide my ushers. It hurt me when I get treated differently or that I am afraid to go out past dark alone. I don’t fit in my own deaf community because they don’t understand the RP. I am not blind so I don’t understand their life. Where do usher people fit in?

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