Book Review

A book written by Ryan Knighton.

Cockeyed: A Memoir

This book is about bits and pieces (pun unintended as to the remaining vision he has) of his life, before and after being diagnosed with retinitis pigmentosa (RP) and how he dealt, and still deals, with it.

Within the first chapter, there was profanity. Oh, no, I thought, not another Jim Knipfel (Slackjaw, a memoir). I’ll finish the book, but is it necessary? Three cuss words in one sentence? But, I as I got further into the book, I was glad to see that a cuss word popped up very sporadically.

He shared how he viewed the world with diseased eyes as it progressed, getting worse over time. He is blunt, straightforward, and insightful, even though, at times, argumentive about getting his point across (especially about the context of some words).

I admired his frankness and humor and how he kept his wits about him. His RP advanced at a much younger age than mine did, and still is. (My earliest recollection of any symptom of RP was in my early to mid-twenties.) His seemed to start around puberty.

I have laughed at some of his statements, such as the time he and his wife went shopping for a couch. She asked him what he thought of it. He walked around it, and “would have kicked it if it had wheels on it.”

Other times, he would be describing something that happened and would make a metaphor of it right afterwards. (It reminded me of how my Written Communications teacher stressed the importance of using fresh similes and metaphors. In other words, don't use the same old sayings, such as "cute as a button." Instead of saying, "gentle as a lamb" you could make up your own and say "gentle as an angel's wing brushing across your cheek." You get the idea.)

He spoke of dating a deaf woman for three years. Yes, I immediately thought of a variation of Hear No Evil, See No Evil, the movie with Gene Wilder and Richard Pryor.

He hit the nail on the head when he mentioned how she would

"say something, make an observation, and be met by people’s confusion. Why does
she repeat things we talked about a minute ago? Why does she suddenly talk about
chess when we’re talking about jazz? Unlike my cane, Jane could hide her hearing
aids under her hair, and, often to her detriment, she preferred to keep it that
way. “ (page 89).

It brings to my mind a quote by Mark Twain: "It is better to keep your mouth closed and let people think you are a fool than to open it and remove all doubt."

I have done this many times. I could see myself, out somewhere-at a family gathering or out to dinner, or even just in the car. I would just say something and find out it was just mentioned, sort of like a reverse ESP moment.

I used to hide my hearing aids with my hair. When I was out with other d/Deaf friends, I would be signing publicly with them. It didn’t bother me. After a while, I was always open about my hearing loss. There was no shame. It was just easier and people are understanding (thus there's no doubt-removing about being a "fool"). Some can even tell in my voice that I have a hearing problem, though I know that happens when I am talking to someone I don’t know, I am nervous, and/or I want to make sure I am clearly understood. It tends to come out somehow in my voice.

I admire him for getting the Orientation and Mobility training and using the cane. I don’t have this under my belt yet. It gives me an idea about people’s reactions to the cane. I liked how he said that it became a part of him, like an extended “eye” to help him navigate his surroundings with each tap.

Sort of like my hearing aids are a part of me. I always say, "I gotta put my 'ears' on." It's a part of me.

I do understand what he meant by “passing as sighted,” because I have done this, too. I also understand what he meant by people doubting the vision problem you have because it looks like you can see more than you do.

I liked how he termed “blinding” in this context:

“My blindness is without a defined ending. I am a blinding man. Unfinished.
Maybe perpetual” (page 259).

Yes, Ryan, I can relate. I am a blinding woman. My vision is slowly eroding. RP knows no pace. Some lose vision faster than others. I know of some RPers/Usherites in their 60s who have some central vision left, while others have a small window of vision by the time they are out of high school.

(Sounds like a good blog title or book title: Blinding; Blinding Woman; Blinding Man; Blinding Times, and so on...)

All in all, I would recommend this book to get an idea of what RP is like, such as the scanning (moving the eyes) to get the “full picture,” even if it is "in bits and pieces."