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."
Labels: RP/Usher Syndrome