I was intrigued when I read the announcement at the DeKalb County Library for the reading and discussion on the book Life After Deaf: My Misadventures in Hearing Loss and Recovery by Noel Holston. I am not deaf but do have a sensory disability and because of people’s lack of understanding sometimes get lumped into the deaf community. I won’t get into all of that right now but will save for another time. In the announcement Holston wrote a memoir about losing his hearing, at age 62. He describes that it was virtually overnight, how he battled with his medical insurance provider, how it impacted his marriage and how he ultimately regained his hearing with a cocular implant. I was quite fascinated and decided to not only attend but read the book.
I downloaded the book from Bookshare, a great resource for books for people with print impairments. As I read, I quickly began to see similarities in his story and mine. Even though Holston is older than me, deaf, married and a man, we had a lot in common. I found myself nodding my head and saying “Hmm, Hmm, that’s right!” like someone in the amen corner at church.
The way he lost his hearing was overnight. he thought it was a sinus cold but later realized it was his hearing. I too started losing my vision rather quickly. My eyes began to tear up all of a sudden and became very sensitive to light. Like Dracula I would shrink away in pain when coming in contact with any form of light. By the time I got to the right doctor for a proper diagnosis I had some permanent eye damage that was not reversable.
We also were prescribed the same exact medications for our condition. I was diagnosed with bilateral uveitis, an auto immune disease that causes inflammation and retinal detachment. At the beginning I had a lot of inflammation and was on prednisone. What was supposed to be about 6 months ended up being 3 years on this drug. and what a rollercoaster ride that was! My doctor also prescribed methotrexate as well which Holston took too. Neither medication worked as a long-term solution for my visual impairment.
Another similarity I could relate to was dealing with isolation. Even though he was married and had friends and family Holston had difficulties with connecting. He shared openly and honestly the challenges of communicating as a deaf person. He talked about the myriad ways of trying to understand what people were saying, carrying around a note pad and pen, and dealing with services that didn’t offer email or text message options. Blindness can also be isolating too. When I lost my vision, I also lost the ability to pick up facial expressions. No more getting those small nuances such as raised eyebrows, grins, smirks, or rolling eyes. I was not able to see body language either. No more seeing hands waving, fingers pointing or shoulders hunching. The only thing I could go by is inflections in a person’s voice and my intuition. Also, since I move my head toward sounds, have an expressive face and have natural-looking eyes people think I can see better than I can and so assumptions are made and things get miscommunicated a lot. Sometimes assumptions are made about the abilities of the blind. That we don’t have a life, work, have fun, date, go out, etc. So, then we don’t get invites to events or are included; which leads to isolation.
Holston approached his journey into deafness with a wry sense of humor titling his chapters with puns and sharing mishaps along the way. One example is how he locked his keys inside his car with the engine still running. No spoiler alert here! You will have to read the book to find out how he got out of that situation because I am not going to tell!
He shared how much he liked Marvel Comics’ Daredevil; a blind lawyer who turns into a super hero fighting crime at night. He copes by focusing on his other senses through sight, smell and touch. He uses them to go walking, exploring nature, going to museums and reading books. The goal is to concentrate on what you have, take pleasure in that and not on what you don’t.
At the end of the library’s reading event, I spoke to Holston to share my appreciation for him writing Life After Deaf and how much his words, life and experiences resonated with my own journey of vision loss. We both realized that even though our disabilities are different learning how to cope and making peace with our situations is where we all can find common ground. He told me it was his hope the book would provide that opportunity for everyone.