Monday, June 04, 2007

The "Nothing"

This little preschooler was wearing hearing aids since she was 18 months old. Look at the old hearing aids. Her mother made special vests to hold the hearing aid box that sent sound through the wires and into the earmold.

She had a lot of auditory lessons to help her catch up to her hearing peers. Once she started talking, her mother said she wouldn’t shut up. She was making up for lost time.

She was taught in a self-contained classroom with other deaf/hard-of-hearing students in a public school in the next county. There she learned sign language and tried to fit in, though she wasn’t “deaf enough.”

In eighth grade, she was mainstreamed in a parochial school in her hometown. Before everything came so easy for her; all she had to do was look at her study material once and ace it. Now she had to struggle to catch up with her hearing peers.

At 16, this young girl was wearing BTEs (behind the ear hearing aids) since she was nine years old. She was looking at a bright future. A future that included a job, maybe even marriage and a family.

She didn’t date much in high school, another parochial school. She dated a hearing man during her 16th summer and then “dated” a hard-of-hearing boy from Lion’s Camp when she was 17. A one-week romance that didn’t last. Oh, they sent letters back and forth throughout their senior year and met again at camp, but the spark wasn’t there anymore. She did date a hearing boy from the local public high school during the fall of her senior year, but that didn’t last long. She just felt funny going out with him while she had the “long distance” relationship, if you can call it that, with camp-boy. She really did not date that much, wasn’t part of the “elite” crowd, and was okay with that. On reflection, she wouldn’t have changed anything. She is who she is today because of that.

She graduated high school. She tried to take some classes at a tech school, but lost interest. Instead, she got a job making sandwiches for a vending company. She worked there for two and a half years.

She found a factory job with good benefits and stayed there for almost 15 years.

During this time she had dated a few guys (including frogs) and got married, had a child, and got divorced. Then remarried and had another child.

But there was something that lurked, sleathily, during her late twenties and throughout her thirties. A nothing, like in The Neverending Story, that was slowly taking over and destroying everything in its wake, making things "disappear." Only it was her vision that this nothing was destroying.

This nothing, called retinitis pigmentosa. still lurks, threatening to take more of her sight little by little. This nothing that sends self-destructive messages to the rods and cones in her eyes and snuffs them, one by one.

It causes her to slow down when going down stairs and curbs. This nothing that makes her "blame" the gopher (remember Caddyshack?) for moving things around on her because she couldn’t see it. If she scanned a little more this way, she’d find what she’s looking for and shake her head at the imaginary gopher.

She just got a diploma from the Medical Office Specialist program and a certificate from the Medical Billing Specialist program. She is currently working on getting a certificate in Coding.

She tries to keep a brave front. She gave up driving a year ago. She’s coping. She’s easily frustrated and scared of what the future would bring. She is torn because she knows she has to prepare herself.

Most RPers do retain central vision for a long time. .

Keep praying for a cure for retinitis pigmentosa and Usher Syndrome. Currently there is no cure, though researchers are working on various "cures."



At Mon Jun 04, 09:13:00 PM , Blogger Sue Flaska said...

Wow! A lot fo what you read reminded me of my sister. My mom also made pockets for her aids, she has been wearing BTE aids for a long time now. She went to Lion's Camp too for a few years, but lost interest. She has never dated (and never will, I am sure) since she has issues with paranoia, self esteem, and a host of other issues.

Thank you for sharing your walk with us. You are so brave!

At Mon Jun 04, 10:16:00 PM , Blogger Jennifer said...

Shari, I think that I have a pretty good handle on being deaf, but I can't imagine losing my sight, too...I don't see HOW you DO it, and keep such a great attitude. I know I'd be a mess if I were in your position. I admire everything you've worked so hard for! :)
I had those big ugly lame-o hearing aids with the long cords when I was little, too. I had to wear a vest with a pocket...I felt so weird! Ah, well...nothing a little therapy can't fix ;)!
You are an excellent writer...keep it up, I love reading it! :)

At Tue Jun 05, 05:42:00 AM , Blogger Shari said...

Sue, it's amazing how a kid can get used to the hearing aids without pulling them out accidently by getting fingers caught in the wires. I can't imagine how it must have been for my mom when I was first fitted with those old hearing aids. My kids at 18 months would have pulled them out. I remember getting the comb caught in the wires and pulling out the old hearing aids. LOL

I loved Lion's Camp. I loved going canoeing down the Plover River and setting up camp outside of camp. I'm sorry your sister didn't like it.

Jennifer, I don't know how I DO it. I just do. RP's very sneaky, slowly you adjust to things/changes. Maybe that's why I don't like other changes that I want to control. I don't know how you handle five kids. You just do. That's it. I guess. You just "do" with what life throws at you whether you like it or not.

At Tue Jun 05, 09:16:00 AM , Blogger lime said...

nice to meet you shari. thanks for stopping by my place so i could find you. that is quite a story you share and at times must be rather frightening. i certainly pray for a cure and hope that until then as much vision can be preserved as possible.

At Wed Jun 06, 11:05:00 AM , Blogger hillgrandmom said...

*hugs*. You are brave.

At Fri Jun 08, 10:53:00 PM , Blogger Amrita said...

Dear Shari, Found your blog thru Word Imperfect.What an eye opener for me. Maybe I suffer from a type of Usher 's syndrome.Mine is also a genetically passed on disease. Since birth I 've had vision difficulties. I am over sensitive to light, color blind and have limited sight. In my mid twenties i started to have hearing loss, i was told i have auto sclerosis. Had sugery...didn 't help. I 've lost 60% of my hearing.Doc told me I have rod photochromatic disease of the eyes.I am a teacher but i lost my disability benefits here in India.Never had the confidence or self esteem to marry. I 'm glad I found your blog.

At Sat Jun 09, 07:15:00 AM , Blogger Shari said...

Lime-hi, I believe prayers can be answered in three ways-yes, no, and wait. It is more frustrating than scary. Thanks for stopping by.

Hillgrandmom-I really don't feel so brave. I just live and try to be as "normal" as possible. The other day, my next-door neighbor asked me if I was working and I said no, but I was going to school. Then I told her about my eye problem-she never guessed it. So I can still fool some people. :)

Amrita-A classic symptom of Usher Syndrome is congential deafness, though there is a Type 3 (they are born with normal hearing or very mild hearing loss and then deteriorates the fastest of the three types-both the vision and the hearing.) You have late-onset hearing loss. I don't know if that would be Usher, because the hearing loss shows up first.

I am sorry that you lost your teaching job. I don't know India's laws, but here in America, that would be discrimmination to fire someone because of a disability(or disabilities). I have some color contrast difficulty. (Is it black or navy?) Thanks for stopping by. :)

At Sun Jun 10, 06:55:00 AM , Blogger Michelle O'Neil said...

Thank you for sharing your story. You are a beautiful soul.


Post a Comment

Subscribe to Post Comments [Atom]

<< Home