My Life Disabled

by Trish Hubschman

I’m deaf/blind and have walking/balance issues. I have a progressive neurological condition. Nobody has ever been able to figure out what it is. I’ve been to countless neurologists over the years. They’ve put me through the same battery of tests, but no one’s been able to come up with a diagnosis. I have my own theory. I presented it to the last neurologist I went to. She didn’t agree with me, but my theory makes more sense than anything else. I was diagnosed with optic atrophy of the eyes when I was eighteen months old. At two years of age, I contracted a staph infection and was hospitalized for ten days. I think the gene that caused the optic nerve damage altered and caused the other disabilities. This condition is called optic atrophy 1 (OPA1).

I know I didn’t have a hearing or walking problem early on. In the 1970s, I watched a lot of television. I sat on the floor close to the set because of my vision loss, but I don’t think I had any trouble hearing it, nor did I turn the volume up. The result of watching TV is that I have a good speaking voice and an imagination. I also read a lot and had my nose close to the book.

When I was around ten, my folks noticed something odd about my hearing and walking. I got my first set of hearing aids (HAs) when I was in fourth grade. It was a horror story. There was too much screeching noise. Nothing made sense. I spent more time trying to hide from everyone because sound coming in was physically painful. Nothing positive came out of those hearing aids. I took them off and that was the end of that. I was labeled lazy and in my own world after that. In sixth grade, I started writing poetry and short stories. I was content, though lonely. I was shy and it was easier and safer being alone than having to try and explain my disabilities to people, especially when I didn’t understand them myself.

Teachers kept saying things like, “You wear glasses, why can’t you read the chalkboard?” or “You should get hearing aids, they’ll help.” No, they wouldn’t. I have nerve damage. I needed clarity in hearing, not volume. Hearing aids could only amplify sound. I knew this, but couldn’t explain it to people and I didn’t have a solid doctor’s diagnosis to back me up. That came around 2000. I have auditory neuropathy, a slow-moving auditory nerve. Sometimes the signal gets in. Sometimes it doesn’t. Thus meaning, sometimes I’ll hear something. Sometimes I won’t.

I graduated high school, went to college, then got a job as a typist with a New York State agency and got married. In the mid-1990s, I started looking into getting the cochlear implant (CI). That would improve clarity of sound, not just amplify it. I went to several Ear, Nose, and Throat doctors. They said I was hearing too good to qualify me for the CI. I protested. We were in a quiet room and I could still see faces. Visual clues are important for people with hearing loss. I was referred to Helen Keller National Center on Long Island’s North Shore. I was again fitted for HAs, which were useless. HKNC was too far from where I lived, so I was sent to a college closer to my home to see the audiologist. Finally, I found someone who gave me the name of a CI doctor. In October 2002, I underwent my first CI surgery. The doctor messed up. I was now deaf in my left ear and had no CI. Two years later, I had the surgery at New York University Hospital with a fantastic surgeon. I’ve had two upgrades of the external CI device called a speech processor. The CI isn’t perfect, but it works better with my type of hearing loss.

The vision disability that I started out with has progressed, but very slowly, along with the two disabilities that I wasn’t born with, the hearing and walking. I don’t watch TV anymore and I can no longer see print on a page, but I listen to audio books and continue to write poetry and stories.

About the Author

Trish is the creator of the Tracy Gayle mystery series, Tidalwave, Stiff Competition and Ratings Game. She also writes short stories, poetry, creative non-fiction and articles. She is a graduate of Long Island University’s Southampton Campus and has a bachelors degree in English-Writing. She lives with her husband, Kevin, and dog, Henry, in Northeast Pennsylvania. Her website is https://www.dldbooks.com/Hubschman/.

• Disabled
• hearing aids
• living with disability
• Trish Hubschman