What If You Weren’t Just Average?

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.

Cyn is Rick's wife, Katie's Mom, and Esther & Oliver's Mémé. She's also a professional geek, avid reader, fledgling coder, enthusiastic gamer (TTRPGs), occasional singer, and devoted stitcher.
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