Do You See What I See...
....do you hear what I hear?....
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We all have a different story to tell because the varying degrees of deafness and vision loss among those of us with Usher Syndrome. It isn't the same-even with all the different Usher types (Type 1, 2, and 3-and probably even a Type 4). It is not the same within family members, either.
My brother and sister have different levels of hearing and vision loss. Our progression of vision loss isn't the same. My hearing loss is much worse than theirs are.
I have had online contact with many others with Usher Syndrome. It makes us one big "family". I learn from them and don't feel as alone in my thoughts and frustrations. It's so easy to share our feelings because we are/have been going through the same things. Some of them both amaze and inspire me.
Many went to college, got a degree, and raised a family. Many found out about the vision loss as a child, a teenager, or an adult. No matter what age you find out that you have an incurable degenerative eye disease, you are devastated. Then you just go day to day. That's all there is to it. You just "do". This is the same with any condition. You just "do".
There's a documentary called Silence with a Touch that gives you some insight to what it is like living with Usher Syndrome. If you are interested, maybe there is one at a library near you.
Labels: RP/Usher Syndrome
10 Comments:
I have learnt so much from you Sahri. Before i got to your blog I read Andrea 's Buzz
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Well, there are a lot of people who have vision levels the same as me who see things very differently.....
Thanks for the insight.
I cannot tell you how much I have learned from reading your blog. I have gone from having "heard of" Usher syndrome...to learning about it. Thank you so much for sharing so much of yourself.
I have niece with retinitis pigmentosa but no hearing loss. I think I will anyway ask her to read your blog.
Thank you for sharing this Shari. It is always a blessing to learn more about people, about things we aren't familiar with. It gives us more understanding and empathy.
My mother had macular degneration when she was 65, so I witnessed her loss of vision and how she coped with that. I was in awe of the way she learned to cope and refused to be a "victim" to this. We can overcome and compensate in so many ways and I am always inspired by those who do.
Having others that we can talk to and share the journey with is empowering to say the least.
Amrita-I am glad that you find my blog so enlightening and informative. Usher Syndrome is relatively rare, yet it's one of the leading causes of deafblindness. Thanks for the website. I'll check it out.
Karma-True. Everyone has a level of vision. Most people have corrective prescription glasses that help. Not for us. I wish it were that simple. And everyone, from those who have cancer to MS to CF or any other condition/disease, has their own coping mechinism.
Hillgrandmom-I didn't know that. It's a small world, even if she doesn't have the hearing loss. It's a double whammy for us, but I am sure she's coping with it the best she can, like the rest of us.
Sherry-MD is the opposite of RP. She sounds like a very strong person. We all have a journey designed by God. He has His reasons why we are the way we are. I like to think that it keeps me closer to Him and depend on/turn to Him more.
Hi Shari,
Anne, here. I'm kind of off-topic with this, but since you mentioned that it is indeed "devastating" when someone gets the RP/Usher diagnosis, it reminded me of how I was "informed" by that eye-doctor, 32 years ago.
As I sat in the exam chair, waiting for her to finish jotting some notes in a chart, the doctor looked up and said bluntly, "You are going blind." I was so stunned that I broke into tears on the spot. The "good" doctor and her nurse were surprised. As if such a pronouncement wasn't awful enough, I had to explain to them that for me it was especially bad news because I was already hearing impaired, and for that reason needed my vision even more than most folks. It was such a ludicrous setting, with me having to "apologize" for crying--Such a sterile, cold, but medically accurate office that was. It was one of the worst days in my life.
Hi Anne, I don't think you are off-topic at all. Maybe a child is more resilient growing up with both losses; it is easier-somewhat. But as it was, being Type II and having it happen as an adult when you already accept your hearing loss, you get hit with a double whammy. I was blubbering like a baby when the doc told me in that oh-so-concerned voice that made me cry even harder. Of course, my brother and sister already were diagnosed with it, but a part of me was hoping that I didn't have it-that maybe I got away with it. Funny, too, because we didn't know what Usher Syndrome was the combination of both RP and congential hearing loss at the time. But even then, I was thinking that the two of them with the hearing loss have RP. What if I had it, too? I didn't want to believe it. After that, I was in denial for a few more years. The rest is history.
Shari, how prevalent is Usher Syndrome? I never heard of it before your blog.
Per Wikipedia and other sources. it is about 3 to 6 out of every 100.000 people. Relatively rare. Both parents have to have the Usher gene in order to pass it on. There is a 25% chance of getting Usher-the same way we get our eye or hair color. But only if both parents are carriers of the gene. :)
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