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A Glimpse Into My Future:

My Introduction to Usher Syndrome
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Dorothy Stiefel dipped into her own experiences to encourage others with Retinitis Pigmentosa
Dorothy Stiefel – founding member of TARP 

35-Day Author Blogging Challenge – Day 5

Dorothy H. Steifel  wrote several books about coping with Retinitis Pigmentosa (RP for short).  She became a forerunner in providing practical resources for individuals and their family members coping with this condition. Retinal specialists began referring their patients to “the RP lady,” as she was called, and she started an organization called TARP (Texas Association for Retinitis Pigmentosa).

In the early 90s when I lived in San Antonio and was trying to get my mind around the fact I was going blind, my ophthalmologist also referred her to me. In fact, I phoned her.  After a lengthy conversation with Dorothy, I felt less alone. Someone else understood what I was going through. 

She sent me two books to help me understand more about RP.  In her book, Stress and Well Being. she addressed how stress only made RP worse and consequently, speeded up vision loss. Stress caused deterioration. In her book, she provided some practical ways to reduce stress, eat well and how a positive attitude could actually help someone retain vision longer.

The second book she sent was about something called Usher Syndrome, which, thank God I didn’t have. Her stories were engaging but made me uneasy. After skimming through the chapters to see how she coped,  I slipped it in my bookshelf. I kept it out of some strange sense of loyalty to her for helping me but this book definitely wasn’t for me.  

The Madness of Usher’s. She talked about the frustrations of facing hearing loss and illustrated it with vivid personal examples. 

Twenty-five years later, the title of that book came back to me. I looked through packed boxes and opened and closed drawers and finally located the now dust-covered book with yellowing pages. I reread a few pages and gulped. Oh no! I could definitely relate to her stories now. 

This wasn’t the early days of RP confusion and yet I felt a sense of dread as I browsed through the book. The biggest thing is that her circumstances sounded similar to my own–having trouble catching words over the phone, losing track of the conversation in restaurants, tuning out in large crowds, having to ask for several repetitions. I recalled how this had happened more frequently in my English language classroom but I hadn’t thought much about it – until I read Dorothy’s stories. 

Read about my visit to my ophthalmologist  when I shared my symptoms with him in an excerpt from Mobility Matters: Stepping Out in Faith.  

***

A bell tinkled as I tripped over the threshold and into the office.

I liked Doc Pritchard on sight. He had big laugh lines around his eyes, and a shock of black unruly hair. The way he muttered to himself as he picked up my file and hunted for a pen in his cluttered examining room reminded me of an absent-minded professor. I finally realized which one—my high school biology teacher.  He continued gathering the few things he needed to examine me: a small slender flashlight and eye drops, which he kept thumping against his hand.

“Darn lid is stuck.”

I hid a smile as I watched him.

Picking up the flashlight, he faced me. “Okay, ready, let’s take a look now.”

After a speedy exam, Doc Pritchard said, “Your Retinitis Pigmentosa looks pretty advanced. I don’t even need to dilate your eyes. How ‘bout that?”

“Yeah, how about that?” I tried to smile. But inwardly I tensed, wondering what was so obvious that he didn’t need drops to see.

He set the small flashlight aside, rolled his chair back and studied me. “I have no problem recommending you to Rita at the BBVS. She’ll fix you right up.”

He gave me a lopsided grin, and I almost expected him to hand me a sucker. Instead he handed me a phone number and curled my fingers around it.

“The BBVS?”

“Rita is a caseworker at the Bureau of Blindness and Visual Services.”

I grimaced. “Right.”

“You’ll like her. She’s great.”

I figured I’d like her. I just didn’t want to need her.

“Officially, we’ll have to sort out your field of vision.” He made a face and mumbled, “More fun paperwork.” I chuckled. Apparently, Doc Pritchard was not a fan of paperwork. “But for now, since you say you can’t hear worth a darn,” he said, smiling to lighten the complaint, “you need a hearing test. It’s possible you have Usher Syndrome, which can go along with RP.”

“Usher?”

“There are a couple of types.” He rubbed his chin. “The first is predominately found in babies. There’s another kind that appears around adolescence. What I’m guessing you may have is a third, less common type they’re discovering which comes later in life.” He tapped the file folder with his pencil. “Like your vision loss, it’s progressive,” he added gently.

“So…I could become deaf, too?”

“Well…” Doc Pritchard bobbed his head back and forth, noncommittally. “First we need to get you to an Ear Nose and Throat specialist and test for it. No need to panic.”

“Of course,” I said quickly. “I’ve actually heard of Usher Syndrome. I read about it when I was diagnosed.”

 “Call Rita and we’ll get the exams set up, so you’ll have some answers, and maybe new hearing aids, by the time your classes come around.”

Hearing aids? I was only forty-eight years old.

My polite smile, which means I really don't understand what someone has just said.
With my polite smile = I didn’t really hear what you said.

***

Have you ever thought you’d gotten past a fright only to have it return years later and establish itself into the forefront of  your life? How did you handle this challenge?If you are one who experiences hearing loss, what are the biggest challenges and / or coping methods?  

You have just read ” Foreshadowing of Usher’s Syndrome” by Amy L. Bovaird. Copyright September 17, 2015. Please share and take time to leave a comment if anything in my post spoke to you. Thanks. 

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Amy Bovaird is the author of two best-selling books Mobility Matters and Cane Confessions: The Lighter Side to Mobility.  An accomplished and inspirational speaker, she talks on a variety of topics based on her life experiences and continues to educate and inspire others through her writing and speaking. She lives with a dual disability—progressive vision and hearing loss due to Usher Syndrome. She blogs about the challenges she faces as she loses more vision and hearing and manages to find humor around almost every corner, AmyBovaird.com. Her books are available at Amazon. Follow her on social media at Amy Bovaird, Author.
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A Glimpse Into My Future

2 thoughts on “A Glimpse Into My Future

  • September 20, 2015 at 5:37 pm
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    I don’t know what I would do if I found out I were losing my hearing also. I depend on it so much.
    I have been visuallly impaired all my life, but I think my remaining sight has been on a slow and gradual decrease for years, but this is hard because it’s not even like I’ve always been totally blind and had no idea what things looked like. I remember colours and words and somewhat clear images of people’s faces. I am losing that and I don’t know how to deal with that. I know what everyone says about stress, but stress reduction methods can only take you so far. Reality must be faced and that is a process I must commit to, again and again, and sometimes that is more painful than others.
    Kerry recently posted…TToT: A Rainy Day In Paradise, #10ThankfulMy Profile

  • September 20, 2015 at 6:22 pm
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    Hi Kerry,
    Just the other day, someone posted in her comment that we can benefit from small and big wins. I really like that. Like you, it’s a daily facing of that loss and adjustment but those wins carry me though. Like your win of swimming at night (the reminder was the pain on your wrists, was it?) but the win was getting out there and becoming involved. For me, a small win is making dessert without something going wrong. A big win is making the whole meal and having no leftovers! I feel for you. It would be scary to be losing images of people’s faces and colors. But keep on bolstering yourself with the small and big wins of life.
    Thank you so much for reading and commenting on my post.
    Amy

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