Thursday, May 22, 2008

Book Review




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."

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Thursday, January 03, 2008

My Maggie

Glitter Graphics

This is my attempt to review a book called My Maggie, written by Rich King, a sportscaster in the Chicago area.

I wasn’t sure what to expect when I read this book. I heard about it from another Usherite (person who has Usher syndrome). She exclaimed that she wouldn’t be surprised if the book were made into a movie. That intrigued me. I am always interested when a book has a character, fiction or non-fiction, with Usher syndrome.

The book was already checked out of the library. Get this:. There was a waiting list!! I was number three. Was this book in demand or what? It just came out a few months ago. After another month, I had to be put back on the waiting list. Something happened and I was dropped. Now, another month or so later of waiting, I caved in. I bought the book. There. No more waiting. And I am sooo glad I did.

I LOVE, LOVE this book!! From the first word to the last. As many readers say. I didn't want to put the book down till I was finished!!

It was about the author’s wife, Maggie. (I thought to myself that I definitely wanted to read this book to get a spousal perspective!!) It was more or less a tribute to Maggie's life. I'll try not to spoil it for anyone, so I will try not to give away too much information.


How often can someone say they married their soulmate? The almost perfect person? Look at the divorce rate. Not many, I’ll bet.

Maggie dealt with hearing loss and later, impeding blindness. Not only that, but had three different kinds of cancer. She switched careers in the prime of her life, to do what she loved most-helping people.

They shared a love so deep, yet gave each other plenty of breathing room to do their own “thing”. Hers was advocacy for the disabled.

I laughed, I cried, I related. I could empathize with so much of what Maggie went through with Usher syndrome. I also loved getting a view, an angle of a person who is close to a person with Usher syndrome. I felt the concerns that he had to go through, but in the end, giving her the independence she wanted, needed. To do daily everyday things, such as walking around with a cane-in a strange city-on her own. That is selfless. I could see a lot of partners hold back a person for fear of their safety. That took a lot of restraint.

I admire Maggie’s strength. I thank Rich for sharing her life with us.

Without further ado, I give it ***** rating. :) Maybe I’m prejudiced because I know Usher syndrome personally, but I guarantee that you’ll be moved by Maggie’s strong spirit. I think that my friend, who recommended this book, is right. This book has Lifetime movie potential written all over it.

In the book, a link was given to see more about My Maggie.

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Friday, July 20, 2007

Harry Potter Fan

I am a Harry Potter fan. Tomorrow the final book is released. I will quote Paul Sweeney when I get to the end of the book, "You know you've read a good book when you turn the last page and feel a little as if you have lost a friend." Only in this case, it's final. No more sequels. It will be a kind of a letdown knowing that this is it. Sigh. Only I hope, from the rumors I have heard about two people dying in the book, that they aren't the ones I am attached to. I don't want it to be the end for a beloved character. I can't even think that the author would choose to do it to our favorite. I don't want to "lose my friend". But to paraphrase what the author says, it's the reality of real life, that death happens. Why not in the wizarding world, too? Kids (and adult readers,too) cannot really avoid it. It's a learning process.

On a lighter note, I am only 20% Harry Potter-obsessed, though, according to this quiz. I guess I can live with that. No need to actually carry a wand around casting spells and wearing long black robes, even Gothic-style. Why would I want to buy extra books in a different language? Does sign language count? Lucky for me, I don't have to reread the books; they are still fresh in my mind. I have watched the movies over and over. All in all, being 20% obsessed is good enough for me. I am happy with it.



I also took this quiz just to see how well I knew my trivial facts about Harry Potter. After all, sometimes when you read or watch something, you realize you missed something. (Or is it just me? lol) Anyway, I passed with 100%. I bet you will, too.

I played this Harry Potter quiz below. I got the info from Jennifer. If you are a Harry Potter fan, try it. I was wondering if I even had a character that matched me. I thought for sure I'd be Ron, because I can be spooked easily and I don't like spiders.

It's fun. Can't wait till the book comes out. Tomorrow. Happy Reading!!



Find out your Harry Potter personality at LiquidGeneration!

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