Monday, April 09, 2007

Irony of Life

Life is ironic in a lof of ways.

When I was younger, I hated having a hearing problem. I went to class with other deaf/hard-of-hearing students and felt like I wasn’t quite “deaf” enough. I didn’t really feel like I belonged. Not really.

Then I was mainstreamed into a hearing school with no accommodations (interpreters, notetakers, FM systems, etc.). I knew I wasn’t “hearing” enough. I did what I could to adjust. (I have said this before. I feel like I am in-between both worlds.)

I started to “expose” my hearing aids. I stopped “hiding” my hearing loss. It didn’t bother me to let the world know that I could not hear that well. If I had my hair down, the cashier at the store would look at me impatiently. What’d she say? Did I find everything okay? Did I want paper or plastic?

If I wore my hair in ponytails, my hearing aids were visible. People had more patience and understanding.

I grew to accept my hearing loss. Of course, I had it all my life. It was easier. Sure, I get frustrated, but it’s something I am used to.

You don’t miss something you never had. I never had “perfect” hearing though I do remember having “better” hearing.

I used to look at a blind person and think, I am glad that I have a hearing problem. Being blind would be worse.

Then the retinitis pigmentosa reared its ugly head. First, it was harder to see at night. Then, gradually the peripheral vision disappeared into a void. A void that is like a thick piece of plastic that you cannot see through-a nothingness. It’s just not there.

Every so often, I made both unconscious and conscious adjustments to each stage of declining vision.

I scanned. I would look around. It’s amazing how the brain can “fill” in the “blind spots”. That’s why it’s so easy to deny a vision problem. You don’t think of this as “blind.” Blind was supposed to be "black." But as the “blind ring” (the area that is affected-shaped like a ring) got wider, you notice more of the area you don’t see, but you still think you see more. This is, again, because of the brain’s capacity to fill in the blanks.

Every once in a while, I would think back to the time when I thought that I was so “lucky” to be hard-of-hearing and not blind. Did I jinx myself?

Now I have two sensory disabilities. What a double-whammy. One I can accept and one I want to hide.

Again, I am hiding a disabilty-trying to, anyway. I don’t want to show the world my visual disability.

I worried how it would affect my job performance. (I still do. Would anyone want to hire someone partially blind and partially deaf?) Would I get fired? (The Americans with Disabilities Act can only do so much to protect you. There are loopholes.)

I still have enough vision to look at people in the eye and talk with them. It’s another in-between world.

I haven’t had any orientation and mobility (O and M) training yet. For the most part I am self-conscious about taking this step.

Sooner or later, I will be getting the O and M training.

How do I feel about it? Angry. Scared. Sad.

When I have the O and M training, will I put the cane away, to collect dust? Will I wait until I have enough guts to show the world that I am legally blind?

Let’s say I walk around with the cane. I may look at people in the eye and nod. Immediately I will feel like a fraud-like I am faking it. (Who would want to fake blindness or partial-blindness?)

Think about the cane usage in a different perspective…I will use second person here.

You don’t want to be stared at because of the cane. You worry about people thinking you are a fraud.

-You are being stared at anyway. You need to adjust a moment or two to the whiteouts (stepping into bright sunlight-everything’s white) or darkness. You just walk slowly, hoping not to walk into someone or something or just stand there until you adjust. (How does this look to a bystander?)

-You bump into an empty chair or a display stand at the store and start to apologize. “Oh, I’m sorry.” (How weird does that look to a bystander?)

-You are looking down at your feet when you walk so you don’t bang your shin into something.

With the cane:

-You can walk with your head held high, staring at the horizon. You are free to look around without worrying about your feet.

-You can move-you can fly. You can walk confidently. No more feet-shuffling or small strides.

But it’s easier said than done.

First, I have to get through the O and M training. Which I do want to do.


To prepare myself.

The question is, when will I be “coming out”? The first few times will be the hardest. It is for most. After that, it gets easier and then it becomes a part of you, like the hearing aid. (This is what I was told by others .)

Again, when will I be ready?? I don’t want to be treated like a “blind” person. I don’t feel “blind.” I still have central vision. I know what my limitations are, to a degree, whether I am stubborn or not to “see” it.

It’s still not that easy. Even after all this “pep-talk.”

In the meantime, keep praying for a cure for RP/Usher Syndrome.

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At Tue Apr 10, 09:45:00 PM , Blogger Unknown said...

Know you are not alone. I experience the same frustrations everyday. No hearing issues, just RP. All I can do is take one day at a time. Strength to you.

At Wed Apr 11, 02:55:00 PM , Blogger Shari said...

Tell me about it, Barry. Thanks for posting. The RP journey is different for everyone, but we all do share a lot of the same issues.

Take care and post a comment whenever you want. I like getting feedback from others on the same RP road. :)

At Wed Apr 11, 09:57:00 PM , Blogger Sue Flaska said...

You let us into your world for a short while, and I appreciate knowing what you go through day to day. You did a wonderful job explaining your feelings, and I "felt" it. A prayer has been shot your way.


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