Anomaly

I’ve always known I’m a weirdo, but I honestly never fully realized just HOW odd I am until recently.

One of the major themes in my life has always been “Why doesn’t anything fit???”

This applies to nearly EVERYTHING – from obvious things like clothes and shoes, to the more abstract things like ideologies and standards. I’ve often wondered if my anomalous thoughts and mental processes are somehow related to my anomalous physiology.

I don’t look obviously deformed or anything, but I recently found out/confirmed (well, months ago now, but who’s even counting these days?) that I AM INDEED a freak of nature. Kind of.

It turns out I have Ehlers-Danlos Syndrome, which is a genetic disorder of the connective tissue. Genetic testing has revealed that I have a “variation of unknown significance” – meaning, more or less, that nobody really understands exactly how the disorder has affected me so far, or might affect me in the future. The disorder can manifest in a huge variety of ways, and there’s no specific data associated with my genetic variation. I have had my heart and brain checked out recently, and those appear to be functioning normally, so at least there’s that!

The big, obvious, glaring thing – the thing that led me to pursue a diagnosis in the first place – is joint hyper-mobility. I always knew I was “double-jointed” in my fingers and toes, and that I was generally “flexible.” I didn’t realize how widespread or how SEVERE the condition was until I started seeing specialists. The Physical Therapists, Occupational Therapists, and the Podiatrist have all basically said “wow, I’ve never seen it that bad before.” Yikes.

I bend in ways and in places that most people don’t. Basically every. single. joint. in my entire body. And it apparently wasn’t enough for them to just bend too far – or even backwards; they also bend sideways (which I discovered in the OT’s office a couple weeks ago while trying out a splint to help stabilize my thumb).

I’ve got weird proportions. My hands and feet are huge compared to my height. My toes are wider and my heels are tinier (and shorter!) than any shoes were ever built to accommodate. My torso is long and my hips are wide, but my shoulders and my “rise” (crotch measurement) are absurdly short.

Practically nothing fits. Even so-called “low-rise” pants, on me, are either high-waist or drop-crotch. Shirts and dresses that fit well around my hips/waist/boobs will invariably have collars that want to settle somewhere in the vicinity of my ears. I also have a massive thigh-gap that eats 2-3″ off the usable inseam of any pair of shorts.

All of these fit issues are exacerbated by another manifestation of this delightful condition: excess and overly-stretchy skin pretty much everywhere I bend. I think my boobs got the worst of it, but my underarms, inner thighs, and pelvis are all a mess. If you want to get an idea of what I’m dealing with here, just look at a Shar Pei. I mean, it’s not THAT bad, but that’s pretty much what it feels like.

I spent a whole lot of years thinking that clothing and shoe designers were retarded. Turns out it’s just me. OOPS. Well, no, I take that back – most of them ARE retarded (modern fashion is a CRIME), but that’s actually not why they never make anything that fits me.  My proportions and body dynamics are too far outside the average range. I am an anomaly.

Back to my point about anomalous thought processes being related to anomalous physiology. It might seem silly, and I’m pretty sure it’s the sort of thing where I’ll never really “know” whether my hunch has any merit, but it’s still an interesting exercise to think about all the various ways in which my being so apparently “misfit,” if you will, compared to basically all of the rest of society, might have impacted my cognitive or psychological development.

SO MANY of the things in my life that have set me apart from everyone else, can be traced back to this condition:

Life-long problems with tooth decay in spite of good dental hygiene – apparently stemming from the intersection of weak enamel, and excess soft tissue folds in the mouth harboring bacteria.

Broad-spectrum resistance to any and all painkillers and anesthetics. I learned not to even take Tylenol as a kid, save on very rare occasion, because I need a double dose for it to be effective. The dentist always has to give me double-injections to get me numb.

Stretch marks EVERYWHERE. Since before puberty. Since before I was ever fat or pregnant. Most are very old and barely visible, but  they’re there, on most of my body. It’s like my skin never knew how to grow without stretch marks.

I started sprouting silver hairs when I was 16.

My body temperature has never been good at regulating. I can get too hot OR too cold just about instantaneously.

— And so much more!

So it’s not just “why doesn’t anything fit” – but also, more broadly, “WTF is wrong with me?”

How could that NOT affect how I relate to the world?

On the other hand, I’ve been told all my life that I’m special, remarkable, one-in-a-million, etc., because I’m smart and talented and perceptive and whatever. I guess I am. It would be false humility to claim otherwise.

But wouldn’t it be funny, wouldn’t it be cosmically apropos for all of the reasons I’ve ever had for maybe getting a bit of a big head, to have been somehow genetically determined by the same condition that has all but crippled me physically at the ripe old age of 33?

Like God gave me a trade-off: “Yeah, you get to be special… but you get to be special, too.”

I’ve wondered sometimes if He might have given me a choice: a really amazing brain and a defective body, or a really amazing body and a defective brain. I can’t tell you how many times I’ve grumbled to myself that life would have been easier if I were prettier and stupider. But then, I’ve NEVER asked for an easier life in the whole time I’ve been here, so I don’t think I’d have ever chosen that beforehand anyway.

One very sobering thought I’ve had is that if I really was abused as a child in the manner I suspect I was (I still have the irrational desire to deny this), having very elastic tissue in general might have actually saved my life. It’s a horrifying thing to think about, but I would have been so small, and the amount of PAIN that I recall was staggering.

But the REALLY sobering thing has been the realization that the abuse I suffered, which made me feel in so many ways like nobody would ever understand me, might actually be one of the most statistically NORMAL things about me. The quirks I’ve developed and the struggles I’ve faced which have stemmed from my sexual initiation in early childhood, tragically, have given me more common ground with my contemporaries than I might have held otherwise.

I’m so strange that I had to be broken to relate to other people?

I don’t know. I’m just throwing thoughts around at this point. But I do have the unsettling, nagging feeling that God actually does want me to relate to people. More than I’d care to if left to my own devices, frankly.

Something about turning weaknesses into strengths, about hijacking evil and sublimating it to God’s will.

Maybe God really did make me different for a reason. Maybe God made me so frickin’ weird, that whenever Satan breaks me it just serves to further reveal my TRUE POWER LEVEL.

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