I’ve been wondering about something for a while. I figure it’s likely to sound fairly conceited, but there ya go.
Measures of disability, like strength, flexibility, or endurance loss—even the IQ or memory tests given to depressed people sometimes to see just how depressed you are—all of them assume that you were “average” in the first place.
What if you weren’t just average?
Seriously, there isn’t usually a baseline for those tests before your injury or loss or illness. There’s no way to say, “No, I was THIS strong, and now I’m only THAT strong” and be heard.
I first realized this when I was given an IQ test by a psychologist, to see how depressed I was. I hadn’t previously realized that IQ tests would ever be used that way. Now, this was a few days after I’d checked myself into the hospital back in 1991 because I was seriously considering suicide. I was VERY depressed.
But the psychologist saw an above-average result on the IQ test and figured that any depression was mild, at best. That didn’t fit with the depression inventory results and so on. I asked her what the result was, and she resisted telling me. When she finally did, I said, “No, that’s very low for ME.” I don’t think she believed me at first, but I have an odd memory for some things. I remembered that I was given the Otis-Lennon test in high school, and I remembered the scores. I also explained that I’d been in Mensa for years—and while the result she got was above average, it certainly wasn’t Mensa-qualifying.
I was reminded of this when I was going through a bunch of testing ordered by my employer’s workman’s compensation carrier after I had the surgery on my left hand that left it numb. They wanted to see if I was malingering or not. The tests were actually designed, apparently, for people like factory workers and delivery men, certainly not technical writers. But in any case, I did too well on them. They were sure that I really SHOULD be able to work just fine. There were no keyboards involved—but because my strength and dexterity were up to some purported “average” they wanted to claim that I had not experienced any loss at all.
I had been playing musical instruments or typing for most of my life and had then turned to doing a lot of needlework as self-imposed occupational therapy to recover my dexterity without being able to feel most of what was happening with my left hand. I would rate my digital dexterity as much higher than average. My right hand tested far better than my left, but they explained that away as being due to right-handedness.
The strength tests showed an “ok” result for a woman. The right hand, again, was far, far stronger—in fact, it showed a good result for a man. Again, it was explained as right-handedness.
Now I happened to have, in my packrat’s files, a copy of an initial physical fitness examination done at a gym when I was 19. I set the records for women’s grip strength there with my LEFT hand—it was stronger than my right hand.
It really didn’t matter to anyone that I knew—and could prove!—that I’d experienced a significant loss in strength and dexterity. It was good enough to be average, so there was no loss. It isn’t as if I was Buffy the Vampire Slayer or anything, but I still resent the fact that they refused to consider the fact that it was a significant loss TO ME.
Yes, I feel somewhat guilty whining about it, when many people have lost a lot more than I did in that relatively minor disability. But it bugs me. The entire assumption that the average fit you ticks me off. I understand the math—that some people, by definition, would have been above average, and some below. But it bugs me anyway.
(And before you think I’m claiming to be some sort of great jock, 1) I am in fact the ONLY non-jock in my family of origin, and most of them are very, very good; 2) my endurance has always SUCKED.)
Now, with the damned fibromyalgia, I can’t help but think about these things again. Some people don’t believe that I am suffering from extreme fatigue, because I do get a lot done—by THEIR standards. By mine, I am a total slacker now. No, it’s not about aging—it’s about the damned FMS.
I USED to have relatively high pain tolerance, partly due to the family-of-origin Marine’s daughter training that you aren’t ever allowed to let anybody KNOW you’re in pain, much less make a sound (and god forbid you let anyone see you cry). I went through having ALL anesthesia and painkillers wear off about 8 hours after having a C-section without yelling or crying, and it was another 4 hours before I did get any medication to help.
In contrast, the pain this weekend was just too much, and for the first time in my life, I was moaning, crying out, and at times yelling due to the pain, without caring who heard, without being embarrassed. I cannot bring myself to believe that the pain was quantitatively worse than the post-C-section pain, so I must have less pain tolerance now.
There are cognitive problems that come with FMS, too, usually referred to as “brain fog.” Mental confusion, short-term memory loss, disorientation—it has been described as similar to being stoned but without the accompanying “high.” You have a common household object in your hand, but can’t for the life of you remember the name for it. You lose your train of thought frequently, forget names, walk into rooms and then can’t remember why you’re there. You wake up disoriented and uncertain of where you are (this happens to me WAY too often, especially when Sam is gone when I wake up). Lately, I’ve found myself mixing up words, putting the syllables in the wrong order at times. I’m not as organized as I once was and frequently find myself looking for things that should be at my fingertips. I find myself overwhelmed at times, and have to turn off any sounds I can, reduce visual input as much as I can, etc. I just can’t deal with many things at once. Doing any kind of homework in a place like the student center, or even in the school library, is unthinkable. I feel like my thoughts are bogged down in tar because I’m thinking so slowly. I stare at common words because they “look wrong” and I honestly can’t tell if they’re spelled correctly.
I realize that these things happen to just about everybody from time to time, but they happen to me often enough to cause significant consternation most days. And EVERY TIME I have an FMS “flare,” I probably shouldn’t be allowed to drive at all.
Anyway, in both high school and college introductory psychology classes, we did some memory tests. My short-term memory was well above average both times. Now I can’t dial a phone number unless I’m looking at it.
My “starting point” for organization, speed of thought, verbal skills, etc. were similarly good enough to start with that most people have no idea that there’s anything wrong.
I want my memory, concentration, focus, organization, and speed of thought back. I want my energy back. I want my pain tolerance back. I want my strength and dexterity back. I want my life back the way it was. I don’t want to be average. I want to be ME again.
And as I proceed with trying to get disability benefits from Social Security, I can’t help but wonder, will they decide that if I’m “good enough” now I haven’t lost anything anyway? I fear that’s the case. How bad would it have to get before their standards would show something wrong? Would I even be able to live with myself at that point?
I don’t like the answers when I think too much about that. There’s a reason Dr. Kevorkian has assisted several FMS sufferers to die, and I honestly don’t think that it was just because of the pain they were experiencing. It was the losses, too. The loss of their “normal,” whatever it was, to begin with. Finding themselves trapped in a body and with a brain that wouldn’t do what it should, wouldn’t do what they KNEW they could do, what they remember being able to do. And it doesn’t matter how anyone else would judge their abilities and their symptoms—the loss is theirs to measure, by whatever THEIR normal was.
