I guess it is time to do the obligatory post to explain my disability. I don't mind, it's just that I have to explain it 30 times a year and it gets old. I want to write further about my career and possible future career; and it will make more sense to you if you understand the context of my disability a bit better. First, I'll explain in functional terms and then I'll tell you the possible etiologies because there is more than one and I'm not lucky enough to have a one word disease that everyone is familiar with. So here is the rundown:
Hearing
Currently I have a severe sensorineural hearing loss that reaches into the 70 dB to 80 dB threshold ranges. That means that a tone in a given frequency that you might hear at 10 dB, I don't hear until it is turned up to at least 70 decibels. I wear Phonak Claro 311 BTE hearing aids with a built-in FM system. These are pretty high tech and cost about $6000. And no, insurance doesn't cover hearing aids. The FM system is a receiver that is built-in to my aids, then I have an external mike that is about the size of a small remote control that I can mike an individual speaker with and that person's voice is amplified into my aids while shutting out other noises. It is great for a large, classroom setting or a conference type meeting. I have also used the FM system as a baby monitor by placing the mike in the babies' room and then I can go around the house and still hear them. Functionally, I do okay in a quiet room with someone I know well. When you get me out into the world, I struggle, A LOT, to communicate. I do know sign, but am not culturally deaf, so I don't use it a whole lot. I would say I'm proficient but not fluent. I am teaching the kids some sign, though. I can talk to some folks that I know well on a amplified telephone. Or I also sometimes use a TTY. Mainly, I do a lot of email and instant messaging, though.
Vision
Ugh. Hard to explain. Vision loss is a dynamic thing. It's not linear like I can just tell you my acuity and be done with it. So here's the best I can do. In my left eye, I have severely limited field and central vision but can see a bit of blurry stuff out of it. I had a retinal detachment when I was 14 and since then, I have not really used this eye at all. In fact, when it became my only usable eye this past year, I would see things and not even recognize what I was looking at. I would see a pencil and my brain would go, "I know I know what that is...but what is it?" My right eye was always my better eye until this past retinal detachment I had when I was pregnant. When I was growing up, I had a series of eye surgeries (I think I counted once that I've had 23 surgeries overall, but I can't remember which is which anymore.) When I started college, I could not read out of my right eye. Then I had a surgery before my junior year, and I could see to read a regular book, just lying on my bed for the first time in years. Since then, the vision in that eye slowly got worse until last November when I lost it all. Then, I had a second surgery in April and got some of it back. In a way, better than I had before. But in other ways, not.
I have no lenses in my eyes due to past surgeries. Lenses are what enable your eyes to focus on things both near and far. Without lenses, glasses do me no good because it only makes one point clearer and everything else is still unclear or worse than it was to begin with. So I have not worn glasses since I was a kid. (And boy, when I did wear glasses, I wore GLASSES!) After my recent surgery, the doctors convinced me to again try glasses for my right eye and I agreed. So now I have these glasses that are bifocals. The near or lower part of the bifocal is supposed to help me read but to tell you the truth, it does me no good. The upper part is for my distance vision and it helps an amazing lot. I can see further into the distance than I ever have been able to before. However, I can't see anything close up, so all the things I do, like eating, taking care of the babies, etc. I can't use my vision much for and the glasses are no help. So I often only wear them when I'm outside walking or something.
Although I still can't see well enough to drive, and never could, I am starting to notice things that I never used to notice. Most noticeably, signs. There are signs EVERYWHERE. I can't even see them all, but of the small percentage that I can see, I've come to this conclusion: Sighted people don't hardly ever have to think. Don't listen to the cars going by and try to get down the traffic pattern before crossing the street, just watch the little red hand turn into a white walkie guy. Don't bother memorizing where things are in the grocery store, just look at the signs. Don't bother trying to pay attention to whether you are going North, South, East, or West, just look at all the street signs to give you clues. Lost in a building? Don't bother trying to estimate how many doors down room 326 is, just walk until you see the signs. A sign will tell you which way to run on the track at the gym on which day. Which train stop you are at. Which one is the women's restroom. Its not like I didn't know these signs were there before, but now that I can actually use some of them I realize that sighted people must just be able to go around and not have a thing stored in their heads. I have massive, massive amounts of data stored in my head. Everything from how to use the ATM machine without seeing it by memorizing the steps to get my money out, to always, ALWAYS knowing my cardinal directions and how the streets lie. So I either think that if I were totally sighted I would either have so much spare brain space that I would be SMARTER THAN GOD, or I would have wasted so much brain space that it would have atrophied and I would be a dumb shit. I dunno, no offense, but y'all got an awful lot of signs out there telling you what to do.
Anyway, so my vision today is, left eye, not too useful at all, right eye is useful for what I call travel vision. Somewhat useful at getting around the house vision (cooking, diapering, etc.), and not useful at reading. I also don't have, and never had binocular vision. This is when your eyes work together to create one picture and also allow you to determine depth. Supposedly I have no depth perception, but I don't understand what that means, really. But I was really shitty at ball sports growing up, so there you go.
Kidneys
I have chronic nephritis and proteinuria and hemoturia. This basically means that my kidneys are working at about 50% right now and I have some protein and blood in my pee all the time that shouldn't be there. Most of the time this is not a big deal. But I do have to watch for infections and kidney stones and get monitored. I may be on a path for a kidney transplant or dialysis, but so far I'm doing OK and it probably won't be for 10 or 20 years maybe. Mostly I think my kidneys affect my energy levels and my immune system. I have at times had to go on Procrit, a drug that helps your blood make red blood cells, because my kidneys affect the rate at which my body will make them.
Etiology (or why am I so fucked up?)
In short, I don't know. All of this I was born with, although it was less severe at birth and has gotten progressively worse through the years. My mother took me on a tour of major research hospitals when I was growing up. Stanford University suspected Retinitis Pigmentosa. At the University of Iowa it was Usher's Syndrome. At Johns Hopkins, it was Stickler's Syndrome. At the University of Kansas, it was Alport's Syndrome. Just recently at Casey Eye Institute, it was none of the above. They theorized that it was because I was born at 44 weeks gestation and they now know that the placenta malfunctions if pregnancy goes much past 40 weeks. So I don't know the cause and I don't know the prognosis, although I can tell just by looking at my history that it all seems to be slowly progressive.
When I graduated from high school, I attended a rehabilitation program for the blind in Nebraska. It was modeled after the National Federation of the Blind philosophy which is quite progressive. I wore blindfolds for 8 hours a day and did everything as a totally blind person would. I learned some Braille, computer, traveled throughout the city with a white cane, cooked and sewed, did carpentry, and whatever else they made me do. This gave me the confidence to know that there are ways to do things no matter what your vision is, and I can transfer that to hearing as well. I have always believed that disability is a natural part of the human condition; something like 85% of us will spend part of our lives with a disability. (The rest of us just drop dead before we get the opportunity.) The problem with disability is not so much the medical and functional aspects of it as much as the social barriers that people put in place. In my past lives as a teacher and hospital worker, I always found very effective ways to accommodate my disability and never had any serious problems with job performance. My problems were mainly when, no matter what I did, someone did not want to believe that I was doing my job just as well as others. I'm not saying there are not real functional obstacles when hiring someone like me, there are. But so often I have not even been allowed to try. I would be the first one to say, I don't think it's safe for me to be doing this task, and then trade tasks or work something else out. But often, I'm not even given the chance, and that is the hardest part about being disabled.
The lack of a chance is _the_ most debilitating thing. I've never really ranted about my inability to hear something--I only rant about my inequal access to information and opportunity.
While I can't imagine being both deaf AND blind, I imagine that interactions with people are more of the same--with them focusing on the disability and not the abilities.
Infuriating and disheartening.
Posted by: somewhat-silent sara | October 03, 2005 at 04:24 PM