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The Road from Here to There - Part 13 12-14-2011 04:47 pm MindWithoutWalls's Blog
Post Follow-Up - Reflections
I posted the following in a discussion yesterday:
I just realized today how I've probably recently been misunderstood. I deliberately tried to get my assessment process done while my disability case is not being reviewed, because I just want answers. But I now realize that, because the work issue seems to somehow dominate any conversation in which it comes up at all, it may seem as though I'm scrounging for excuses not to work. Also, I do think I have multiple issues, health-wise, but the doctor said something about multiple issues, and then I said it also. So, because she said it first, then I did, even though I'd had the thought on my own before then, she may think I was just parroting her words. I hate this. The more this thing goes on, the more confused I feel, and the more afraid I am about the future. I don't know how anything works. I even find myself struggling to explain things in the comments section of my blog, because I think maybe I'm not being clear enough there in my posts in the first place. Sometimes I feel really bad.
Things have been tough. I feel like I can't tell my friends what's going on, but I'm worried they know something's up because of my recent behavior. I'm not able to keep it together in public as well as I usually do, and I'm having more trouble than usual in doing the things that I need to in order to make and keep commitments. I can usually mask it until I can come through, and then nobody knows what it took to accomplish it. They only know I did what I said I would. Not so, this time around.
I've had a couple of thoughts brewing lately. One had to do with my scoliosis. I have three curves in my spine: one in my neck and two in my back. I wore a brace for five years to keep the worse ones, in my back, from progressing. But suppose scoliosis had been unknown to my family and my doctor, as well as others around me. I could've spent my adolescence, when the problem might have become more apparent, being pressured by my parents and teachers not to slouch to one side, with them assuming I was engaging in some deliberate teenage carelessness, out of disrespect for others and lack of concern for my own well-being. As an adult, I might've been frustrated by the way my clothes fit and unable to determine what was wrong. Maybe others would've blamed it on cheap clothing and admonished me to spend more on better clothes if it bothered me so much. Someone seeing me bend down to tie my shoes might've noticed one side of my rib cage appearing to be higher than the other and felt creeped out by it. Good thing I never wanted to be a model. I could never have been hired with one shoulder being higher than the other. And heaven help me if I complained of back pain if people thought I'd brought it on myself with chronically poor posture - a thing they believed I could've done something about.
But then suppose I learned about scoliosis one day. If I suspected it might be the problem, I would want to go to my doctor and be properly screened. Then I could explain all the things that hadn't made sense before and have something to say to people who didn't understand. Might there be people who would refuse to believe, thinking I was just using it as an excuse for my body being in poor condition, due to my "deliberate slouching"? Maybe, but that wouldn't be my fault. I would know the truth, backed by proper diagnosis. It wouldn't matter if a brace would do me no good by now, because I'm not growing anymore and haven't been for years. It wouldn't matter if I had no need for surgery, because that's a very serious procedure meant for for much more serious cases. Knowing the truth would be what mattered. On the other hand, I'd be really upset if the doctor refused to screen me at all, even though she knew about scoliosis, because she figured I couldn't have it if I weren't twisted up like a pretzel. As it is, my scoliosis is easy to see, if I position myself correctly for someone to have a look. So, had I not worn a brace, even a friend would likely be able to tell. Given that fact, I'd say it would be a good bet that someone in such circumstances could be right with a self-diagnosis, even despite the pitfalls of people trying to do that sort of thing. It would be wrong for a doctor to dismiss such a person out of hand.
In addition to that, I've also been remembering what happened with a car I owned years ago. I was in my 20s, and I really hadn't been driving all that long. I bought the car used, and it was in good condition. But I began to have a problem with it. It would start up fine when I first went out for the day, but it would refuse to start after it sat for a while. So, I'd go out, park to do something, such as stop at the store, and then come back to find myself struggling to get it going again. People thought I was flooding the engine or something. Someone even opened up the hood and had a look for me, but she couldn't find a thing wrong. I took it to a mechanic, but he had no trouble starting it. As I recall, I tried that several times, but the car kept starting up just fine at the shop. One day, I finally left the car at the shop instead of waiting for it. I went home and waited. After a while, I called the mechanic on the phone to see how things were going. He told me he still wasn't able to find anything. But then he called back after a while. Apparently, on all the previous occasions, the car had sat for quite a while before its turn came up to be looked at, and that was too long. When I spoke to the mechanic on the phone, he shut the car off to get my call. When he went back, it wouldn't start. Aha! At last he could look for the cause. It turned out to be a faulty computer chip. He replaced it, and I never had that problem again.
What this proves is that something can really be going on, even if most people can't see it, let alone see the reason behind it. I wasn't flooding the engine. I wasn't imagining things. I can only be glad the mechanic had the patience to stick with the problem long enough for the symptom to appear so that he could figure things out. If I can get that for a car, don't I deserve as much for my own mind and body?
Now, a brain is not like a computer, with interchangeable chips. So, my situation is really more like the one I'd be in with undiagnosed scoliosis (or fibromyalgia, which I was diagnosed with by a very sharp, informed doctor when I was 19, back when almost nobody had ever heard of it). I'm just saying that, even if an issue is hard to spot, that doesn't mean it isn't there. Also, I could've compensated for my car trouble by sitting around long enough for it to agree to finally start. But I would've had to have hoped for people to be understanding about it if it had made me late when it was important to be on time. Being hassled for not being punctual wouldn't have helped things any. So, to avoid that, I would've had to have made adjustments that others wouldn't necessarily have been aware of, involving taking much more time out for getting things done, so that I could compensate for how long the car had to sit before agreeing to get going. And I would've had to have been careful about letting on about it to people who were disinclined to believe me. Without the mechanic's explanation, I could've ended up with quite a bit of trouble. It's not as though I could've afforded a new car or sold the one that couldn't reliably start in order to get the cash for a new one.
I know I've already created an extensive list to show why I think I need a proper assessment and why I believe I have Asperger's. But I think what I've written above might make my reasons and feelings more clear to those who still don't get it. At least I hope so.