ZZZs with RP

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For a long time, I've had to fight falling asleep during the day. Sometimes I give in and sometimes I don't. I thought I was narcoleptic.

This article says that sleep problems are pretty common among RPers (people with retinitis pigmentosa).

Since my late twenties I've had a hard time sleeping through the night. I'd wake up around 2 a.m. Sometimes I can fall back to sleep; sometimes I can't. Then when I am wide awake, I get the "morning after" withdrawl symptoms of not sleeping right. I could be reading something and nod off.

I remember during my driving days, I would be fighting sleep on my way home from work. How scary is that? I always blamed it on getting five hours of sleep or interrupted sleep.

Now I don't have to. Or maybe it just compounded the problem, along with stresses in my life.

Still, I thought it was interesting.

RP Video and Some Good News!!

This is a video from YouTube about a young man's RP (retinitis pigmentosa) journey. It may give you a better look into the "blinding" world. Remember, everyone has a different story to tell and while they are similar, the progression is different, too. There is a demonstration of tunnel vision in this video, but it is not what I see. I have a bigger "tunnel" so I can see more centrally and it's not peripherally foggy for me. It's a void. A nothingness. It's just not there. It has no color, but I can sense movement in the "blind spots."

Sorry, no closed captioning.

Tunnel Vision

Newsbreaking news (okay, not that newsbreakable considering that it's two days old and wasn't that fragile, but it's NEWS!!)

Drum roll, please....

Insurance company finally approved the CI (cochlear implant). Now comes the next worry....my pocketbook. ;) How much will it cost me? But look at what I can gain. Better hearing. Better quality of life. I know that CIs won't make me a "hearing" person, but I'm okay with that. I've lived with it all my life. But it's great news, nonetheless.

Onyx was still sick. She was throwing up. I was blaming the new food we switched her to and it was affecting her bladder, too. I was wondering if she was allergic to something. She was listless and slept a lot. Hubby took her to the vet. She had a bladder infection and roundworm. Ugh. Back to the meds. But, now she is more playful again. (Big worryfree smile here.)

A few days ago, I was sitting out on my porch steps just gazing down the street without really looking. It was more that I was lost in thought. Someone was talking to me, touching my shoe (I think it was my shoe. I was at the high end of the porch steps and a person would have to reach over to touch me to get my attention.) I've also have not been getting the best "hearing" quality from my hearing aids. I need to get new tubes for them. That's another blog post, though.) It was one of my sign language interpreters from the college. I was just glad to be able to talk to someone without having to work so hard to communicate, but I got "rusty" with some signs, too. I re-learn them fast, though. :) What can I say? I'm oral and don't have much of an opportunity to sign. I don't hang out with other hard-of-hearing or d/Deaf people that know signs.

Hubby had a wide smile on his face when he joined me on the porch. I was thinking to myself, what's so funny, bub? Are you uncomfortable? But when I asked him about it later, he said that I was in my "glory," signing away.

The day after the flood, Angel realized her bike was gone. Oh, no!! It was stolen!! We stopped by a few neighboring houses to see if she left her bike there. Nope. It was gone, probably during the excitement of the flooding.

The next day, she wanted to play with a neighbor kid and came home with her BIKE!! She left it there, but lost her helmet. It must have floated away during the flood. Whew. But she was unable to ride her bike until she got a new helmet (which she impatiently whined about for two more days till it was replaced.)

Flare and her best friend (who slept over) watched DVDs all night. I sat and watched the last half of Juno with them. I could hear them break out into laughter as I was reading the captions.

I remember two instances where I laughed a few delayed seconds after they did:

Juno, a pregnant teen in high school, stops by her dad's house. He says something like, "my puffed up June bug."

The adoptive mother came in to hold her new baby and catches sight of the grandmother, Juno's stepmom or mother. (I got into the middle of the movie so I didn't know which one was which.)

She asks, "How do I look?"

The grandmother says, "Like a new mom, scared ____less. "

Smiles. OXOX

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."

TV Shows

Check your local listings for exact times and dates of the shows.

Glitter Graphics

If you are interested, there's a "Cold Case" episode on Sunday, March 30th (on CBS).

This episode focuses on the controversy of CIs (cochlear implants) within the Deaf community. It is going to be situated in a boarding (or residental) school for the Deaf.

Another show, a Hallmark show, will air on CBS April 20 called "Sweet Nothings in My Ear" starring Marlee Matlin. It is about a deaf wife and a hearing husband. They have a son who is deaf. The husband wants him to have a CI. Disagreements between the parents ensue.

While I understand the issue of the Deaf culture's debate with the CI, I think that it's becoming more and more common to see CI users. I don't know how much they are accepted now than they were in the past. I do not believe that CIs will make the Deaf culture obsolete. Even though I am oral, I like to use signs as a back up tool. When I am having a hard time understanding someone, my oldest will fingerspell so I "get" it. A CI is not any different. It helps you to hear better, but it's not perfect. Sign language can still be something to fall back on.

I really do not agree with the rationale that children implanted with CIs should be 100% oral. My parents were told not to learn sign language. "Make them talk," was the doctor's comment. (This was in the 1960s-oralism was pretty heavy and it seems to be that way with some children with CIs.) If we learned signs, we wouldn't talk. A lot of deaf children were mainstreamed in this way. Sometimes it works; sometimes it doesn't. I was lucky enough to be signing at school, even though I didn't sign at home. I taught my hearing sister the manual alphabet and we fingerspelled to each other. My hard-of-hearing brother and sister were mainstreamed at an earlier age than I was. They did not retain signs very well. I was mainstreamed in 8th grade so I was able to retain a lot of signs. My brother knows very little signs and my sister just completed an ASL class. Kudos to her. (Now we can sign together.)

When the hearing aids came out, they were not happy with audism/oralism.

I grew up with a small number of d/Deaf students and if I remember correctly, they've all worn hearing aids even though their hearing was much worse than mine was (at that time). We signed, some worked harder to learn speech, but our teachers were built-in interpreters. We were encouraged to use all forms of communication.

I guess you could say I was "bi-lingual" in the respect that I was oral and used signs when I was around the d/Deaf. I am not a fluent ASL signer, but I do use SEE or PSE. I can be a bit "rusty" in some signs because they've been modified in the past 20 years. If I did forget any signs, it easy for me to relearn it. Kind of like riding a bike-at least for me it is.

But is it "wrong" to be oral? To sign?

I look at it this way: A Spanish family moved into the area ten years ago. While the children grew up, they spoke Spanish within their family circle, but while attending an American school, they picked up on the English language. They learned to speak English, even though they still spoke Spanish at home. The parents of these children picked up on the English language very slowly. Some Spanish-American children end up translating for their parents.

Maybe that's not the best anology, but you get my drift. Then again, I don't want to ruffle anyone's feathers. It can be a touchy subject.

A movie to rent: I just heard about a movie called "What's Bugging Seth?". It is about a deaf man who strives to be successful despite his adversity (hearing loss). It is based on the filmmaker's (Eli Steele) life.

There have been an increasing amount of TV exposure about deafness and all I want is that it portrays the right image. There are too many stereotypes.

I've seen movies/TV shows about blindness. All I want is a more realistic account of certain diseases. Is that too much to ask?

The other day I watched a re-run of Monk. He is a germophobic investigator that solves crimes. He has a lot of hang-ups he has to deal with. He also still grieves for his late wife, Trudy.

In this episode, a woman was "cured" from RP with a corneal implant from his late wife. I was a bit amused, but at the same time not too happy to see that. A corneal implant will not cure RP. RP is involves the rods and cones of the retina. It has nothing to do with the cornea.

There's more, but I'll get off my soapbox...

My World

When I started this blog, I wanted to write about what it is like living with Usher Syndrome. That my perspective, frame of reference, and view would help others understand and find their own answers. I have had some viewers stumble across my blog doing a google search with keywords such as, "should I drive with RP?, " "hearing aids," "guide dog rules," "parenting deafblind," "retinitis pigmentosa," and " diagnosis of retinitis pigmentosa at 56." A recent search was "deafblind story." It reminds me of all the posts I have written about, too. Sometimes I know that my blog will not help them find that answer, such as "diagnosis of RP at 56."

I think of the various topics I have used to help show the world what we can or can't do or just things that we deal with or others deal with being "deafblind." I am happy that I can serve some purpose to educate and do some form of advocating for RP/Usher Syndrome and the deafblind. This started out as an outlet to just talk about my feelings, but it has grown into something more. It has been therapeutic to do this because I know that some people out there are looking for answers and I hope that I have helped them.

Being a student, I know the frustrations of trying to use a search engine to find relevant answers. And for my regular visitors, I always welcome them to take a peek at my world.

I want to add that if your google search puts you at the most recent post, please check the archives and then go to the edit menu and click "Find" and then use the key word again. That will highlight the word you are looking for. Hope this helps.