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."

CapTel

I first heard of CapTel from my DVR counselor back in October 2004. It was my first real semester I went back to school and a Support Service staffer at the tech college thought it was a good idea for me to sign up for VR services.

CapTel is a captioned telephone. The caller can dial the number of the person he wants to call and hear his or her voice as well as read the caption at the same time, though it's delayed (much like on TV-the caption is behind a few seconds).



There is also other feature that people who have vision impairment along with hearing loss can use: CapTel USB. This connects to the computer and the captions are displayed in written text on the computer monitor much like ZoomText (a computer software that magnifies text and enables one to change background colors and font).

When I went through the paperwork with my vocational rehab counselor, she mentioned the CapTel. I had no idea what it was. When I went home that night, I googled it. I navigated the website and asked a question. I was sent a packet about CapTel and its features. There was an order form included. I paged through it and put it away.

A few months later, the phone rang. Hubby answered it and gave it to me. "For you." I frown at him. I don't really get a lot of callers. They'd rather talk to Hubby unless they have a lot of patience. The woman on the other end was talking about CapTel. Me, excited I actually got some words from a stranger, "CapTel?" She went on about the information that was sent to me several weeks ago.

"Oh. I don't hear that well."

Something in her voice told me that she knew I didn't hear that well. It took a few delayed "blonde" moments before it sunk in that she was a CapTel rep inquiring about my interest in CapTel and whether I was going to buy a phone.

I told her I wasn't sure what I was going to do. I wanted to look at it some more. It bothered me that there was a third party involved, transcribing the captions for the phone.

I still have that packet in my filing cabinet collecting dust.

Why? Well, as I mentioned, it bothered me that I would have a third party "listening in." Someone has to transcribe the captions, much like the TTY/TDD (teletypewriter/telephone device for the d/Deaf). I have a TTY, though I only use it to make appointments. I don't really want to use it for personal calls, unless I knew that the person I want to call has a TTY, too. For me, I reasoned, I didn't have much use for a CapTel. I really don't go around calling people and when I do, I know them (my mom, family members, and some friends who are patient). I don't always do well on the phone with male voices, even Hubby's.



Now, there's something new in the proverbal town of the HOH and the D/deaf and it's free: It's called Web CapTel. Hamilton Relay (to see if it services in your state) or Sprint WebCapTel®. The captions will display on the computer screen.

But, as we all know, technology continues to evolve. I was told that voice recognition may be the next step, making transcribers/relay operators obsolete (maybe). I was also told that the Captioned Services do not transcribe the captions, but acutally repeat what the person on the other end says into a computer with voice recognition software that is used to send captioning to the CapTel.

Digital CapTel phones are coming out next year and voice-recognition will be used, if the bugs can be ironed out by then.

This appeals to me because there would not be a third party involved. I guess that always bugged me, even when I used the relay system to make calls with my TTY. I kept it impersonal. I realize that the relay operators/transcribers have a confidentiality and privacy rule in place. It just makes me feel better knowing I am talking to one person.

Another feature of the phone is the large numbers for dialing. At first, four years ago, it was kind of a personal insult to me (only in my mind) that the numbers had to be so LARGE. I didn't need large print, thank you. That was my attitude then. Though I still don't need it, I may in the future and I can't always be "stubborn." Why can't there be a smaller numerical keyboard? (I'm just sayin'). Or is this more marketed toward the aging population who have vision problems due to age. along with hearing loss? I would think that a lot of people with hearing loss may be using this phone do not have visual issues. I wonder how they feel with such a large numerical keyboard?

The CapTel phone is great for those who have a good speaking voice. I have a clear voice. My voice can pass for a hearing person, though I think, as my hearing continues to decline, it takes on a different tone.

If you know something more that I haven't mentioned or if I am wrong about something, please let me know.

This post is dedicated to two Usherites who inquired if I knew about CapTel. Thanks for the idea for a post on this blog. The timing couldn't have been more perfect. :)

Dolphins, Penguins, and Whales! Oh, My!!

Of course, there’s more to the title than that. We were riding high and low-on air and water.

The day started off with a nagging wake-up call from my trusty Sonic Boom alarm clock at 4 a.m.

I woke up Flare at 4:30. Gramma M. was going to pick us up at 5:15ish. Everyone going to the field trip to Chicago included all the 8th graders and their parents. Almost all had parents coming along on the trip, even sets of parents. This was BIG.

We all had to meet at the school lunch room at 5:30. The teacher did a roll call to make sure everyone was there. Then we had a prayer for a safe trip.

The Kobussen Coach bus (the second, 36-seater bus in the link) was waiting for u s outside the school door. It has a bathroom in the back!! The steps were a bit tricky. Four steps. I didn’t expect another step in the start of the aisle.Gramma M and I sat in the middle area of the bus. First thing I noticed was the seats: It was cushy and soft; not vinyl and stiff like the old school buses. It was weird not having a seat belt. Then I noticed TVs. There was three of them. One in front of the bus, right in the middle, then two more on each side in the middle of the bus. We were able to watch DVDs on the trip there.

It was a long, long, long trip to Chicago. Whew. It was a smooth ride. It wasn’t bouncy or noisy. I did hear a man talking on a cellphone here and there between DVDs. I couldn’t tell you what the movie was about because I wasn’t watching it. No captioning. I wasn’t interested anyway. I just gazed at the view outside the window. I must have dozed off a bit, too.

We saw the Sears Tower and the John Hancock building in the distance. Soon we stopped at the Shedd Aquarium. It was huge!! The first thing I noticed was the darkness. It was dark in there. Gramma M guided me through the labyrinths of the museum.

I loved seeing the seahorses and seadragons. That was cool. The leafy sea dragon caught my attention.

There were many fish and sea creatures, including coral.

Then we waited for a dolphin show. That was really fun to see them do their acts. They were constantly praised with food. At the grand finale, the four dolphins jumped to the side of the wall on their sides. Everyone clapped.

Then we went into the bowels of the museum where we could see them underwater. We saw penguins!! (Those of you who know how much I like penguins know how nutty I would get to see them.) They looked like they would be about knee high. Some waddled and kind of jumped around to speed up getting to their destination. They were really cute, I thought. I watched one pull back his arm-fins as he waddled. If I didn’t know better, I’d say he looked like he strutted loved getting the attention from all the visitors.

We saw whales and sea lions,too.

There was a gift shop in there. They seemed to be pricey so I didn’t want to buy anything. There were a lot of cute dolphin necklaces.

Soon, it was 12:30 and we had to get back to the bus. The teacher did a head count to make sure everyone was there.

We ate our packed lunches on the bus. Gramma M opened her Diet Coke bottle and sprayed fizz all over me and the window next to me. I didn’t have time to react. No big deal. I wasn’t going to melt. I saw the humor in it. (grin)

Soon we were headed to the area where we would get on a boat tour. We had to wait a while. At about 1:30 we went on the boat. I could hear the tour guide speaking, but it was just noise. I could feel the vibrations of the speaker on the boat, but I couldn’t make out what he was saying. It was just mumbo-jumbo. I gazed at the buildings as we passed them. Some looked like they were built right into the banks of the Chicago River. Before we headed out to Lake Michigan, we entered a locking area. We had to wait for the water to fill in. I remembered learning about locks in middle school, but never actually was in one. Cool!!

During some parts of the tour on the Big Lake, we were sprayed with water. Some were chunky. I covered up my ears so my hearing aids wouldn’t get wet. That must have looked superficial, but I didn’t care. Hearing aids are expensive and they can’t get wet. I didn’t trust myself to take them out and put them in my purse. I might drop them or lose them.

I was able to see the Chicago skyline from the lake. We saw the Ferris wheel at Navy Pier.

After the tour, we headed back to the bus. It was just after 3 p.m. I felt heat on my face and knew I got either sunburned or windburned or both. I developed a headache. I didn't know if it was from the sun and the water-glare or what. It came and went throughout the day, intensifying and ebbing.

Now we were going to the last leg of our trip, the Navy Pier. In my ignorance (I didn’t really research this), I thought the Navy Pier was about the Ferris wheel and about some sight-seeing. I didn’t know it was a giant mall.

We stopped to eat a Chicago hot dog. I haven't had a hot dog in ages.

Gramma M and I oohed and ahhed over the stained glass that was on display. I thought they looked like Oriental rugs in glass. Most of them were made in the mid-1800s. Wow. I am sure many were from old churches. There were a lot of them. One looked almost like the one in our church.

We walked around outside to look for the Ferris wheel. We were going north. Gramma M stopped some people to ask ferwhere the Ferris wheel was. Turned out we were walking in the wrong direction. Finally, the Ferris wheel was in sight. Gramma M has a fear of heights. She refused to ride on Ferris wheels. She tried calling Flare on her cell to "rescue" her, but got her voice mail instead. Gramma M decided to hold her breath and join me on the big, high Ferris wheel. She asked if they could slow it down so I could enter without fumbling around. Steps. Ugh.



We tightened our eyes as we ascended. But it wasn’t bad. It didn’t feel like eight minutes at all. That was how long the ride was. It was only one go-around. When she said we were at the top, I couldn’t believe it. It was the smoothest, least shaky Ferris wheel ride I ever had ridden on. Once we got to the bottom, Gramma M asked for them to slow it down for me get out safely.

Then we were off to do some shopping. We were already getting short on time. We found a store that sold tee-shirts. I got Flare a pink tee that said “Navy Pier hip chick” with a picture of a baby chick (in honor of her constant reminders to me to “get with it, Mom”) and for Angel I got a yellow tee that said, “Someone who loves me very much went to the Navy Pier and got me this shirt.” I also found some mini-black Lab beanie babies and got two of them. I thought about getting another dog breed, but I knew they’d fight over the black Lab. Might as well give one to each of them.

I couldn’t find anything for me in that store. So we found another store with shirts. I found a blue Navy Pier shirt in a neat writing.

It was 5:30 so we had to head back to the bus. The bus driver said that traffic was going to be horrible. Friday night rush hour in Chicago must be a bear (pardon the pun, Chicago Bears).

When we got back in Wisconsin, we were able to make another stop at a McDonald’s. By this time, the bus driver knew I had a step problem and I heard him say, “there’s a step, and another one.” Gramma M exclaimed, “You’re getting good at this!” I kind of laughed at that.

I wouldn’t have been in need of so much assistance, but I was in uncharted territory, I can go out and about in my own hometown. I know where everything is, unless of course, things are moved around on me. But everything else was unfamiliar. Or if I am not paying attention.

We finally got back home at 9:20 p.m. I was stiff and my neck even was sore from my throbbing headache. I think I really need to get better sunglasses. The sun just hits me in the eyes. I am using amber tinted sunglasses that are blue blockers, but I will have to look into special glasses.
(Like NOir).

Gramma M says she had a “neat, fun day.” I am glad. At times I felt awkward about needing so much assistance, but it was dark in the aquarium and there were steps galore-lurking everywhere that posed a hazard. I am glad she was there and willing to help.

Thanks, Gramma M.

When we got home, I showed the kids the stuff I got them. Angel was still up. Hubby took the day off today so Angel could get to school and home while we were gone. Since I was going to be on the class trip from 5:30 a.m. to around 9:00 p.m.., she needed someone at home. Thanks, Hubby.

There was an extra bag with the stuff I bought, full of pens and pirate stuff. There was even a package of plastic that turned out to be a little beach ball the size of a basketball when air was blown into it. I did not purchase them. Did Gramma M forget them? Flare called her on her cell. Gramma M said that the store cashier stuffed my bag with freebies. Oh. Okay. Mystery solved.

BTW, we did meet up with Flare off and on throughout the day. She was off with her friends.

She got a nice pink tee-shirt that said, “Chicago” with the Chicago skyline underneath of it. Really cool. If I’d have seen that shirt, I’d have wanted to buy one for myself. Oh, well. We didn’t really have much time to shop.

She told me about this incident: She was at the Ferris wheel with her classmates. A woman came up to her and shoved a pamphlet in her face. “I am deaf-mute. Will you buy this?”

D/d af people do not like peddling. They do not like how this portrays them to the hearing world. I was surprised at this. Had I have met this woman; I would have signed to her. She was probably not authentically Deaf-mute. D/deaf people do not peddle. They get angry when they see others do this.

(I never forgot the time I saw a man who said he ws deaf-mute and was selling little plastic American flags for $1.00 at a local resturant about 20 years ago. I signed to him and told him I was hard-of-hearing. He just kind of gave me a big silent laugh and shook his fingers at me. I knew something was wrong. He was faking it. Otherwise, he'd have signed back or at least gestured. He looked really nervous and left soon afterwards.)

Anyway, Flare says to her, “No. My mom is deaf and she doesn’t do that.” The woman just glared at her and walked away, muttering to herself. (If she were mute, would she have been talking to herself?)

All in all, it was a fun day. Would I do it again? Hmm, in six years, Angel will have her 8th grade class trip....

CART

Today was the first I've heard of CART (Commincation Access Realtime Translation) or "realtime captioning."

Am I out of the loop or what? It's been around for a few years.

I just had to investigate this topic. I love the Internet. (Are libraries going to become obsolete? I still like to check out books for free, so maybe not.) ;)

Anyway, CART is mostly used by the hard-of-hearing and d/Deaf (even by those who do not use sign language).

It is an assistive device that provides access to communication by converting the spoken language into written language using a stenotype, notebook computer, and realtime software.

Where was this 20+ years ago when I was mainstreamed? I had no access to interpreters. All I could do was talk with the teachers to make sure I understood what was assigned for homework. This would have been great!! Things are always improving!! Don't you love technology?

I know that when I was going to the local tech college, my interpreters always insisted on closed captionings on videos/movies that were shown. Of course, the instructors couldn't turn off all the lights in the classroom if it wasn't CC so I could see the interpreter. (No brainer there-I'm night-blind. I could see the movie in the dark, but without CC, what's the use? Then again, can a d/Deaf or hard-of-hearing person see anything when it's pitch dark, even if they didn't have retinitis pigmentosa?) It was not easy to try to see the movie without CC and watch the interpreter at the same time.

The ADA (Americans with Disablities Act) supports CART. It did mention that it's still trying to get a foothold at the university/college level. This is surprising. A link was provided to try to gain accessiblity of CART in universities/colleges. Not all deaf or hard-of-hearing students know sign language. They may need more accommodations than just notetakers and FM systems.

Here is another link describing CART.

Conscientious and Compassionate Kids

My kids are always ready to give me a helping hand, especially in the dark. (Though they do need firmness when it comes to household chores, but that's a different story.)

If I am in an unfamiliar, darkened area, one of them will grab my hand and lead me a designated spot (chair, bathroom, car, etc.).

It's like they are on autopilot. It's second nature to them. They know Mom doesn't see that well in the dark. If there's a lamp that offers some visibiity, I will only see what's right in front of me.
It will be similar to this:

Everything else around me will be non-existent. I won't see it.

In familiar surroundings, I know where everything is. The brain has this great capacity to fill in the blanks so that you think you see more than you really do. I could move my eyes across the room and I would know where everything is. I might not see it, but I know it's there. All I have to do is dart my eyes back to that spot. That picture will still be there. My bottle of water will still be to the right of me. The person I am talking to will still be there (unless, of course, he/she moves away and I find out I am talking to air). The snapshot in my mind will give me, for lack of a better phrase, a false sense of security about my surroundings.

The girls are really good about it. They both understand it, yet I feel like I am making them grow up too fast.

With hearing loss, I guess I have many ways to make up it, such as watching facial expressions and body language. I don't always pick up on tones of voices, but the facial expression will make up for that-to a point. I have had hearing loss all my life. It's always been a part of me. I am used to the frustrations of not "getting" everything. This, I could live with.

My youngest will, as kids do, try to find a way to use it to her advantage. If I say "no" to something, she'll ask me again, over and over. Some kids may do this to wear down the parent. Some parents may break down and say, "Okay, fine." But, I take it in a different context. To me, it's like she's repeating it because she doesn't think I heard her right. "Mom, I said...." This is supposed to make it "okay." Is that going to get the"yes" answer she seeks? Nice try.

It's taking me a long time to accept visual impairment. I always look back to the days when my vision was better. When I was a child, my siblings and I, and the few kids we had in the neighborhood would play Hide and Seek. Or we would go swimming after dark or walk around the quiet country roads in the dark. I was able to see stars in the night sky. I remember hunting for nightcrawlers at night after a rain.

I was able to read for long periods of time without missing a line.

I dabbled in tennis, I enjoyed it. Now I would not play tennis. I can't keep my eye on the ball. It disappears from my line of vision and I can't find it.

Parenting is hard work. With a dual sensory disorder, I always hope that my kids will not take advantage of that. "Mom won't hear it or see it." They have on occasion tried to get away with things, but then again, what kid doesn't? There are times when I do not see or hear what they are doing, but again, what kid doesn't try?

I hope that they will have enough conscience to know what's right and what's wrong.

I know that my kids will be more sensitive and compassionate towards others who are "different."

And that's okay with me. :)