Who Has Your Ear?
http://chroniclesoffibro.blogspot.com/2012/07/who-has-your-ear.html
"Sick with an illness great portions of society either don't believe exists or refuse to comprehend the severity of incapacitation, we can get lots of negativity shooting our way. Doubt, criticism, dismissal, or worse, speculations of insanity."
Sometimes Leah Tyler gets it just right.
If you ask people with disabilities, or people with children with disabilities, they'll tell you it's not the disability itself that causes the most pain, or even the financial repercussions. It's the spiritual warfare, and the soldiers you do battle with are the comments and attitudes from family and friends and doctors and acquaintances. You're lazy, you're not really sick, you look fine, you choose to be sick, you should take vitamins/take supplements/eat organic/become a vegan, you should exercise more, you need to get a job, you need to manage your money better, you need to try harder, pay attention, you're not that stupid, hurry up, you're too cheerful to really be sick, you complain too much, you're a liar, you're depressed, what you need is more self-confidence....
I've never not been disabled, so I don't know what that's like, but I imagine 'normal' people (there must be a few somewhere) struggle with negativity, too. It's everywhere. It's an epidemic.
In one week....
I've made people mad because I couldn't park quickly enough, or straight enough. I didn't know I couldn't go to the downtown library in the summer because the parking garage is more crowded and I can't park in just one space--I need two or three. Now I know--it's either go to a parking garage further away and walk (in this heat with four kids), or go to a branch library until school starts up again.
I've made strangers (at least, I think they were strangers) mad by not hearing them, and by not moving fast enough in stores because it's only the hundredth time I've been there and I can't find things that I buy all the time. And how many people did I meet this week and fail to recognize? Did anybody try to talk to me, but I didn't hear it? I'll never know. (It's an odd, unsettling moment when you find out you have prosopagnosia and you're out in public and you realize that anybody you can see might be anybody you know. After a while you just sorta get used to it.)
I've also heard from the government--that we're lying, we're trying to cheat the system. Again.
I've heard from people close to me that I could basically do things if I tried, as if I was just being difficult. Something broke and there was no way I was going to figure out how to fix it--I didn't even know what the part that needed replacing was called, or what it looked like. Actually, you could show it to me now and tomorrow I might not recognize it. The best I could do is describe it to myself in words and try to remember the description. (Once my husband was showing me something, and he started describing it as he was showing me, and then asked me if I was going to actually look at it. I think it was a bit of an epiphany for him when I told him that I was busy memorizing what he was saying.)
I got to a point a couple of days ago where I announced to my family that I'm tired of explaining when I can't do something--like hearing something somebody said the first time (stupid window AC background noise grumble), or figuring out how to work something mechanical as fast as everybody else with their average visual skills. They've heard it before, they know this already. Explaining myself (most of the time, anyway, to people who already know) is a bad habit I seriously need to break.
Yesterday I got to try to explain to someone else for the hundredth time that I still can't find my way around in a car and that they should just pretend I've never been to the city I grew up in before. (I should know there's a tennis court there? Why have I never noticed the tennis court? Where was my brain when I was driving past the tennis court all those times?)
This morning I woke up, got online, checked out my CVID group, and discovered someone saying that people who don't follow their regimen of diet and supplements are choosing to be sick. Other people are fighting that battle. I've fought other ones, and I will again, but I don't let things strangers say online bother me too much.
Wednesday I dropped two of my kids off at a friend's house. I got lost. Again. Not too badly. We finally found it. We were kind of laughing about it, which is good. But that was the third time I've driven there. Yep, I got lost the other two times, too. In case you were wondering. I have to pick them up again today. Will I get lost again? Then I have to follow somebody tonight while they show me where something is so we can meet there tomorrow. Will I get lost following them and wander around, unable to tell them by phone where I am, unable to talk about any landmarks in that part of town because it's an unfamiliar no-man's land for me? Will I get lost tomorrow morning even though I've been shown where it's at? Will they get mad?
I try not to worry. None of this is tragic. Hey, at least I'm doing well physically. I can breathe. But it's like this pretty much every. single. week. This is my normal.
It used to be worse. I didn't know what most of the problems were myself, I only knew that I had to keep anybody else from finding out so they wouldn't get mad. There is a fine line between trying to function as well as possible, and trying to function well enough to keep people from getting mad. That's another territory I sometimes get turned around and lost in, even though I've been living here all my life and you'd think I'd know my way around by now....
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