Fuck it.
Today, let's talk about congenital medical conditions.
More specifically: Mine.
Not many people are aware of this, but underneath my clothes, despite having all of the correct parts, the parts are defective. This rather substantial truth has fused itself to every aspect of my personality and is what makes me who I am on even the most fundamental level. And at the same time, the energy devoted to keeping the truth hidden from everyone for most of my life has become such a routine part of my daily existence that I have stopped noticing that I am a gigantic liar. The facade of normalcy has replaced the real person. And the really weird thing is, I even believe it sometimes--I believe that I can pass for a normal human being. I am guilty of entertaining the delusion that I am physically normal. And yet, self-delusion is the worst kind of delusion, is it not? I am the worst kind of lie.
So here is the truth.
Klippel-Trenauney Syndrome...
... is a very stupid name for a very stupid medical problem.
For an embarrassingly long time I had managed to remain positively oblivious to these three very stupid words and their relevance to my life. Yet, the first time I remember hearing them, when my mother uttered them as I sat at the foot of her bed watching her casually flip through sale papers, my face exploded like a catastrophic eruption at Mount SnotAndTears. I wept bitterly and like a complete asshole. I even mentally chastised myself for it. Stop crying, asshole! But I kept crying anyways because these three stupid words caused a direct hit to a pain zone that nothing ever enters and no one ever sees.
Here is more of the truth:
Klippel Trenauney Syndrome, or KTS if you want to make it sound hip, is a
congenital defect affecting the vascular and lymphatic system that is
characterized by varicose veins, gigantism of appendages, disfiguring fatty
cysts, and port wine stains. It presents itself in a very small percentage of
children, a mere 5% of the population, and of that 5%, many end up having an illustrious career with the circus. Surprisingly little is actually known about how KTS develops. All that is known is that it is a
genetic transcription error triggered by pure happenstance, a purely random
genetic mutation. Not only did I win this freaky mutant lottery, I also got the bonus power ball because I
have an atypical form of KTS, which only affects an infinitesimally small percentage of
the world's population. Basically, it's just me and you, Billy Corgan:
Unlike Corgan, I don't have the stains covering my body. Or the disfiguring cysts. But without clothes on, I look like something Picasso painted while drunk. And if I dress strategically, I can pass for a normal. A mutant walks among you and you might never even suspect.
I'm fortunate, really. If my case were more severe, I might have had terrible subcutaneous weeping ulcers. If my case were more severe, I might have had to have a leg amputated. Or an enormous useless hand. Or one labia that I would have to push around in a shopping cart. No, I am atypical. I don't get the awesome circus career. I walk among you. I am fortunate.
Yet, I don't always get away with it. Sometimes, I forget that I'm defined by a gigantic lie until some minor douchebag cluelessly brings it to my attention with their inept attempt at socializing, perverse uncouthness, and idle curiosity. "Yo, what's up with your leg?" They will ask me, as if this is something you should ever ask someone.
Incoming flashback:
When I was younger and my symptoms started to present, my mother
used to take me to the Children's HELLspital. I would sit trembling in my
chair, totally oblivious to what was going on, as my mother hugged her purse and flipped through a Soap Opera Digest. The waiting area was a chaotic circus--toys strewn all over the place, pictures of tight-rope walking clowns on the walls, chalk boards covered in senseless
kid graffiti, the errant balloon--all imbued with the palpable oppressiveness of death row, but a death row with too much fucking clown imagery. And then there was the smell. It was an appalling haze of old carpet, disinfectant, shitty diapers and baby powder. So, while my mother chewed her lip and read the latest about Luke and Laura, I sat there with the vacant stare of festering apprehension, watching "Where in
the World is Carmen San Diego" on the overhead televisions to distract myself, wishing I could be in any of those far away places--anywhere but in that hell mouth of a waiting room. I would sit there trying to block out the smell and wanting to defecate in my
pants and not knowing exactly why. (On a side note, this repeated exposure to Carmen San Diego under these conditions was how I came to develop my Pavlovian poop response to Rockapella,
as well as any and all acapella groups and women in red trench coats. Also, as an aside to my aside, CLOWNS MAKE ABSOLUTELY NOTHING BETTER.)
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After an
inordinate amount of time spent lingering in this purgatorial playground, my name would be called and I would be greeted by some overly enthusiastic RN in scrubs the color of an Easter egg, effectively establishing my abhorrence for smiling and pastels. Her name would be Lisa or Maggie or Erin or Danielle. Didn't matter what her name was. They were all insincere assholes.
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They would all open with the same inane question: "So Jennifer
(no one calls me Jennifer, by the way), how was school today?" I'd shrug at them and mutter something like "fine" or "okay," while simultaneously shrieking internally, "HOW DO YOU THINK IT WAS YOU STUPID IDIOT. Let's just
get this over with Dawn, Sara, Michelle, or whatever your name is so I can go home and get back to my awesomely normal childhood and my oodles of friends." I was seven at the time, but I was already honing the bitterness and sarcasm that would accompany me on this journey called life. Today, these mechanisms allow me to feast on the flesh of the haters, so thanks for that, JessicaLynn.
DawnMarieErinSamantha would shuffle me into some room or another and deposit me there with only my trepidation and a hospital gown to keep me company. Now, if vulnerability were represented by a garment, unquestionably, it
would be the hospital johnny. Even now, approaching my forties, the feeling of nakedness is unbearable and I still play Deal or No Deal with medical staff in a desperate attempt to keep my clothes on and my dignity, but I digress. After a veritable eternity in kid years, there would come a limp knock on the door that would swing open revealing a procession of white coats carrying clipboards. They would proceed to strip me down, redress me in that useless hospital gown, and wrestle me onto the examination table despite my vehement protestations. Curiously
enough, while I can remember every minute detail of this song and dance with crystal clarity, I don't actually remember the vascular specialist who terrified me. I couldn't even tell you what his name
was. He was some terrifically big shit though--the top vascular specialist in the country or whatever.
I can only remember his thick-rimmed glasses and his premature baldness and the really inappropriate way he would rub my seven-year-old thighs, trying to convey... what, reassurance? It wasn't reassuring. I think the guy was actually charged with child molestation sometime in the late 90s, but I don't know why I think that or where that information came from. Akashic records, maybe. Most likely just wishful thinking. Again, I digress.
Yes, I fondly recall how Dr. Grope Hands proceeded
to turn me this way and that, lifting my johnnie to reveal to the learned assemblage the mystery that is my awkward flesh, carefully cataloging every part of my anatomy that inspired the most shame within me--all for the benefit
of medical science. They would never use my name when speaking about me. I was referred to as "the
patient" and described with endearing adjectives like "abnormal," "uncommon," and "atypical." At no point did they ever see a child standing before them, just an oddity that could breathe and blink--a genetic enigma only as valuable as the research opportunities it presented.
At the conclusion of what was to be the final appointment, as the doctors filed out of the room and I sat in a cold corner pulling on my clothes, the specialist let my mother into the room and whispered to her (well within earshot) that if I didn't continue to submit to these routine humiliations, and undergo their experimental surgeries, I could be dead by the time I was 30. (I'm 39 now so I guess the joke is on them.) On the drive home, in an impossibly determined voice for a seven-year-old, I told my mother that I was never coming back to this shit-hole place ever again. My mother said nothing, and never took her eyes off the road, but we never returned and we never spoke of it again until about 20 years later.
I don't blame my mother for her silence that day. I was creepy as hell.
---
During my time spent at Children's, I discovered that I was able to retreat so far into fantasy that I actually could disappear into it. It was my freaky super mutant power. Just as Kitty Pryde could walk through walls, or Nightcrawler could bamf and be creepy and smell bad, I could retreat inwardly so effectively, so entirely, that I could actually block out entire portions of my memory. It is for this reason that I cannot recall anything else from my time spent at Children's Hellspital, which is probably a blessing. And it is for this reason that I had forgotten those three fucking words that were so crucial to defining my existence--Klippel-Trenaunay Syndrome. I had forgotten that I had a syndrome with a NAME. The name, you see, that's what makes it real.
Fast-forward about 20-something years, to my mother flipping through sale papers and speaking those three words as if she hadn't just unceremoniously summoned a level 27 demon. All of a sudden, between the produce page and the meat section, that facade of normalcy was gone and I was left with an actual condition that I knew virtually nothing about. I began to remember, very quickly, faces, feelings--they began to emerge from the depths of my quagmire with alarming rapidity. So hell yeah I wept. I wept, big fat tears, pregnant with all of the repressed hurts that had colored my formative years a murky shade of awkwardness. My mother continued casually flipping through sale papers. "Oh look," I remember her saying as my world shook to its foundations. "Pork tenderloin, 3.99 a pound."
There is kind of a happy ending, I suppose. After a butt-load of therapy, I was eventually able to see a different specialist--the leading KTS specialist in the country--and was told that not only was I entirely healthy and nowhere in danger of imminently dying, but that what was done to me as a child was absolutely unconscionable. Apparently, since the 80s, the medical community has come a long way in how they treat children. You will forgive me if I remain skeptical.
And my mom and I are fine now. We had plenty of time to hate each other and plenty of time to fix it. So there's also that.
I suppose I should be grateful. People often tell me it makes me "special." It could be so much worse. I try to remember this every summer, when the rest of the world wears miniskirts and bathing suits and has fun while I lurk in cold, clammy shadows so that no one might gaze upon me in disgust. It's fine. I have embraced the darkness. I have embraced my darkness. The darkness suits me.
(better conclusion needed)At the conclusion of what was to be the final appointment, as the doctors filed out of the room and I sat in a cold corner pulling on my clothes, the specialist let my mother into the room and whispered to her (well within earshot) that if I didn't continue to submit to these routine humiliations, and undergo their experimental surgeries, I could be dead by the time I was 30. (I'm 39 now so I guess the joke is on them.) On the drive home, in an impossibly determined voice for a seven-year-old, I told my mother that I was never coming back to this shit-hole place ever again. My mother said nothing, and never took her eyes off the road, but we never returned and we never spoke of it again until about 20 years later.
I don't blame my mother for her silence that day. I was creepy as hell.
---
During my time spent at Children's, I discovered that I was able to retreat so far into fantasy that I actually could disappear into it. It was my freaky super mutant power. Just as Kitty Pryde could walk through walls, or Nightcrawler could bamf and be creepy and smell bad, I could retreat inwardly so effectively, so entirely, that I could actually block out entire portions of my memory. It is for this reason that I cannot recall anything else from my time spent at Children's Hellspital, which is probably a blessing. And it is for this reason that I had forgotten those three fucking words that were so crucial to defining my existence--Klippel-Trenaunay Syndrome. I had forgotten that I had a syndrome with a NAME. The name, you see, that's what makes it real.
Fast-forward about 20-something years, to my mother flipping through sale papers and speaking those three words as if she hadn't just unceremoniously summoned a level 27 demon. All of a sudden, between the produce page and the meat section, that facade of normalcy was gone and I was left with an actual condition that I knew virtually nothing about. I began to remember, very quickly, faces, feelings--they began to emerge from the depths of my quagmire with alarming rapidity. So hell yeah I wept. I wept, big fat tears, pregnant with all of the repressed hurts that had colored my formative years a murky shade of awkwardness. My mother continued casually flipping through sale papers. "Oh look," I remember her saying as my world shook to its foundations. "Pork tenderloin, 3.99 a pound."
There is kind of a happy ending, I suppose. After a butt-load of therapy, I was eventually able to see a different specialist--the leading KTS specialist in the country--and was told that not only was I entirely healthy and nowhere in danger of imminently dying, but that what was done to me as a child was absolutely unconscionable. Apparently, since the 80s, the medical community has come a long way in how they treat children. You will forgive me if I remain skeptical.
And my mom and I are fine now. We had plenty of time to hate each other and plenty of time to fix it. So there's also that.
I suppose I should be grateful. People often tell me it makes me "special." It could be so much worse. I try to remember this every summer, when the rest of the world wears miniskirts and bathing suits and has fun while I lurk in cold, clammy shadows so that no one might gaze upon me in disgust. It's fine. I have embraced the darkness. I have embraced my darkness. The darkness suits me.
