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.

Really.

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.

Sign Language

I use sign language websites to brush up on my signing. Most of the signs I have learned are 30 years old. Some signs have been modified over the years.

This website is good for looking for a word you are not sure of. It's also great for beginners, too. I enjoy using this website to verify a sign for a word. You simply click on a letter at the bottom of the web page and then scroll (on the right) for the word you want to look at.

This website is also a fun one. I use the "QuizMe!" to check my knowledge. There is even a section for teaching babies sign language. I remember teaching the girls signs for 'mommy," "daddy," "more," "please," "thank you," "drink," and "milk." This enabled them to tell me what they wanted-especially at mealtimes.

I think it's important to learn the manual alphabet before learning the signs. This is because when you don't know or aren't sure of the sign for a word, you can fingerspell it. Believe me, though I know a lot of signs, I couldn't believe how rusty I was. I didn't use sign language for a long time until I went back to the tech college. A lot of the signs stayed with me, but there were times when I didn't realize a sign had been modified or updated or I just didn't know a sign for a word.

Here is a website to practice your fingerspelling.

ASL (American Sign Language) is not the same as as BSL (British Sign Language) or signs in other countries. There may be similarities, but I really haven't taken the time to compare and really look at the signs used in other countries.

I just thought that I would share the websites with those who are from the States or the UK (BSL).

I will be looking at BSL and look at the differences in ASL. It's interesting.

I want to make a note here that I am not the best at ASL as I am with SEE (Signed Exact English) or maybe even PSE (Pidgin Signed English).

I don't know when or how I will practice tactile signing. This would mean touching the other signer's hand(s) as he or she is signing. It would be another step I don't want to think about. It would be like giving in to Usher Syndrome. It's hard to explain. I know that it's best to be prepared for blindness and learn all I can, but there's still this part of me that wants to hang on to hope that a cure would be found. Maybe I am still in denial. I am continously going through the grieving process (denial, bargaining, anger, depression, and acceptance). I take steps backwards and forwards all the time. I have to keep adjusting to the disease so I start going through the process all over again. I don't just want to sit around and wait for it to take away all my sight. I don't want to give up.

Then again, it could come in handy if I did know tactile or even Braille. I have met so many wonderful and seemingly strong people who have Usher Syndrome nationwide. They are all supportive. They give helpful suggestions and share experiences. They keep me strong.

Fears of Growing Old

It is so interesting to compare degrees of hearing loss and vision loss from Usher Syndrome. Those of us who have siblings with Usher Syndrome may have different rates of progression or were born with varying degress of loss to begin with. It doesn't matter if a male or female sibling is worse than the other. Usher Syndrome does not work in predictable ways. In the same way, an older sibling may have better vision than a younger one or visa versa.

I still can't help but think that stress plays a big role in the outcome. If you have cancer, stress can worsen or spread the disease faster, can't it?

Stressors such as jobs, strained relationships, pregnancies (if pregnancy can affect the mother's calcuim, potassium, and magnisium, why not the protein (look at the subheading:What genes are related to Usher Syndrome? in this website). Here's more on the proteins.

A lot of things can affect those genes, even stress. And the normal aging process.

Some people have fears about growing old. More wrinkles. Gray hair. Thinner skin. Some things are not as easy to do anymore-the body's getting weaker.

I have my own fears about growing old: More progressive loss of vision (and hearing) as I grow older. I wish I could just "freeze" the progression or stay in remission from now on. When I was younger, I could hear and see so much better. Now the older I get, the more vision and hearing I lose.

My World

When I started this blog, I wanted to write about what it is like living with Usher Syndrome. That my perspective, frame of reference, and view would help others understand and find their own answers. I have had some viewers stumble across my blog doing a google search with keywords such as, "should I drive with RP?, " "hearing aids," "guide dog rules," "parenting deafblind," "retinitis pigmentosa," and " diagnosis of retinitis pigmentosa at 56." A recent search was "deafblind story." It reminds me of all the posts I have written about, too. Sometimes I know that my blog will not help them find that answer, such as "diagnosis of RP at 56."

I think of the various topics I have used to help show the world what we can or can't do or just things that we deal with or others deal with being "deafblind." I am happy that I can serve some purpose to educate and do some form of advocating for RP/Usher Syndrome and the deafblind. This started out as an outlet to just talk about my feelings, but it has grown into something more. It has been therapeutic to do this because I know that some people out there are looking for answers and I hope that I have helped them.

Being a student, I know the frustrations of trying to use a search engine to find relevant answers. And for my regular visitors, I always welcome them to take a peek at my world.

I want to add that if your google search puts you at the most recent post, please check the archives and then go to the edit menu and click "Find" and then use the key word again. That will highlight the word you are looking for. Hope this helps.