Tuesday, October 23, 2012

My Kawasaki, Myself

There's been a lot of talk lately about the benefits and disadvantages of Medicare in America, and whether it's everything that's cracked up to be.  Complaints about hospital waiting times and being forced to the whims of the government.  However, there was a period in my life that I was seriously sick, and could've died without fast medical help.  My parents have often expressed their gratefulness for a Government policy that, despite it being widely in use nowadays, was decried when it was first implemented and suggested back in the days, even going so far as doctors going on strike in protest in the 60s.  Very much like the current political situation in the States.

This is also a rather long personal account.  More after the cut.
It was the dead of winter and the Fall semester of Grade 10 of High School, the toughest scholar year.  For a few days in a row, I'd been finding it extremely difficult to walk, let along hold anything in my hands.  I had some kind of rash on my body that was affecting my ability to move.  My eyes and hands were so puffy that I could barely concentrate.  Walking basically consisted of dragging one foot in front of the other.  I could only write if I held the tip of the pen in my mouth, and moved it around while pressing down on the page.  When it was pointed out that I wasn't feeling too well, I was given permission to go home early.  In fact, the teacher personally drove me back home himself, because he was so concerned with how I looked.

I was reluctant to leave, since I didn't want to risk missing a day of school.  I knew that if I missed anything in class, I would have to pay for it later by studying twice as hard later on.  Getting notes from students later would help, but it would lack the personal experience of being there.  But in this case, I was so tired I could barely put up an argument.  Secretly, I was relieved.

I barely remember the trip home.  When I got there, I just collapsed in bed, still wearing my winter jacket because I felt so cold.  When I woke up around suppertime, my parents were shocked at my appearance, and figured I should go to the walk-in clinic to get a verdict, since they couldn't find my symptoms in the medical handbook.  (This was before doctor websites became popular, giving rise to online hypochondriacs everywhere)  We just barely made it before closing time and the remaining doctor there agreed to give me a look.  upon seeing my rash on my face and arms, she admitted that she was stymied.  With no other option, it was decided to drive me to the hospital for a second opinion.

It started to snow, and my dad had some trouble parking without a shovel present, so I waited as best as I could in the lobby while looking out the thin window for him to come and my turn to come up.  When I was first admitted in line, ALMOST IMMEDIATELY the hospital staff started paying attention to my condition.  I had some blood drawn from me for further tests, and the result left me so dizzy that I couldn't stand.  I was no stranger to needles, so I wasn't too scared of them, but for some reason, the experience left me feeling light-headed.  I was led to a hospital bed where the staff proceeded to inject IV antibiotics and saline solution tubes in my wrist.  Later, they had to resort to cutting off my shirt so they could change me into hospital robes.  I really liked that shirt, and am still sore about it.

For the first day, I was mainly monitored.  I was still doing my best to stay on my feet, even though the rash on my soles still made walking difficult.  Despite my protests at needing help to go to the bathroom to give an urinary sample, I was adamant in being self-sufficient in that field.  Unfortunately, I'm somewhat of a constipated retainer even under the best of conditions.  I have trouble peeing if I don't have something handy to read, which is why there's dozens of books in the bathroom.  And there was no helpful reading material present there.  Even if there had been, it's doubtful it would've helped, because the angle I was to try to pee into the container was made more difficult with the IV tube in my dominant hand.  Eventually, it grew evident that I would need the dreaded... CATHETER to take care of my body fluids.  The pain I endured was unbearable, and I can't think of anything that compares to it.  A year later, I was visibly sick when it was used as a joke early in the Car 54 Where Are You? movie.

One of the first medical procedures that was given was a nurse padded my rash-infected body with wet towels and cream, that I was not allowed to scratch, even though I felt extremely itchy.  The process was extremely uncomfortable, since I'm not used to ignoring itchiness.  If there's an itch, I immediately have to scratch it.  I'm  actually limber enough to have both hands touch the small of my back from behind.  But I endured the hour-long torture.  My mother commented that given how compliant I was with everything that was going on, I must be REALLY sick.  Typically, I thought, "When I'm feeling normal, I sound sick, but when I'm sick, I sound normal."
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Eventually, my condition deteriorated to the extent where I was moved to the ICU.  I had a temperature of 104 degrees, and was wheeled into the Emergency Ward for Infectious Diseases where the doctors proceeded to try to figure out what my medical condition was, and whether I was contagious.  Since I didn't seem to spread my infections to anyone else, it was certain that my condition was self-isolated.  I didn't begin to understand the severity of what I was going through until later.  It turned out that I had water in my lungs, and that was why I was having so much trouble moving and breathing.  It certainly explained why I felt like I'd aged fifty years overnight.  At least it'd be a good preview of things to come when I'm old, if I ever manage to live that long.

In addition to the wrist IV, I also had a tube in my neck artery, and my foot.  I wore an oxygen mask constantly, and had an oxygen monitor on my finger.  Blood was drawn from my fingers daily, which was no easy feat, because my skin was extremely wrinkled.  For some reason, the nurses seemed to have trouble finding my veins, and I grew to loath these sessions.  My blood pressure had dropped to a low of 68/24.  To understand the severity of this, the normal rate for most people is around 104/70.

They injected a hallucinogenic drug in order to inject a tube in my jugular vein.  I tried my best to remain coherent, because I was afraid of losing my mental capabilities, but I eventually succumbed to the effects.  I was in a drug-induced state where the picture to the right of me kept changing shape, into various cartoon figures, such as Dagwood Bumstead, Asterix, Achille Talon, Cubitus and various others I can't remember right now.  I never got a chance to see the picture properly, and I'm kind of regretting it now.  I also had a slight out-of-body experience where I was aware of the red and green lights on the machine behind me, but that could've been influenced by any of the numerous medical dramas that introduced such devices.

Lying there on that hospital bed wondering what the heck was happening to me, there was one thing that helped preserve my sanity.  I was lucky enough to be positioned in a certain way that I was facing in front of a circular clock.  I'm generally anxious when I don't know what time it is down to the millisecond, and routinely check my watch every five minutes or so, because I have no sense of the progression of time.  It could be anywhere from ten seconds to ten hours, and until I check, I won't feel reassured.  This clock played a major part in helping me keep calm.

I was in complete agony and could barely move. My only sense of relief came when the technicians hooked me up to a harness to take ultrasound x-rays of my body without compromising my position and I felt completely at ease being heavily pressed at both sides.  I practically PLEADED with them to leave me there, since I felt comfortable and secure, but they never relinquished to my demands.  I'd just been diagnosed with Asperger's the year before, and this kind of harness was very much in the vein of Temple Grandin's Squeeze Machine.

I was not allowed to drink water, despite my constant thirst.  The only thing I was allowed to drink was a disgusting potassium substance that I had to swallow in large quantities, and almost made me throw up.  The only other solace came from ice cubes that were periodically inserted in my mouth, and the condensed water that fogged up in my ventilator.  Every six hours or so, I was requested to take some "horse pills" that would help alleviate my condition, but I found downing them extremely difficult due to my swollen tongue.  Not to mention that my throat kept getting scratched by the outline of said pills, and I eventually grew to loath the upcoming deadlines for these events.  I later found out that I would be more willing to down pills if I mixed them in with pre-chewed food instead of liquids, since the mashed food provided a more comfortable protective lining.

When the rash started to go away, the doctors said that it was safe for me to start drinking fluids again.  I was overjoyed, but my sense of relief was short lived, because that was when the counter-effects of the disease started to kick in, filling my heart and lungs with water.  (Kind of ironic if you think about it) However, I was so weak that I could barely eat or drink anything because my tongue was so swollen and nothing tasted good enough.  However, while my regular Bubby was away in Florida, Cousin Bubby stayed behind, though I always had reservations of her, because her apartment was cramped with no entertaining diversions, and she smoked.  But she brought over some chicken soup, which was the only thing I managed to swallow.  This helped save my life.

For days, I lay there, having one parent look over me to ensure that I was still alive.  My father used this opportunity to take advantage of his sick days that he'd been accumulating for years to stay at my side when my mother wasn't available, and needed to rest.  They worked in shifts, giving me prescribed pills as needed, and explained that the doctors still didn't know what was wrong with me.  On about the fourth day, they finally found a name for my condition - Kawasaki.  It was normally a childhood ailment that occurred in young children, which explained why the doctors were baffled.  It would be like having a more extreme version of measles showing up in an adult.  It's rare, but it happens.  Until then, my only familiarity with the name Kawasaki was from a MAD article about suitable corporate sound effects, with appropriate nightmare fuel in its panels.

The fact that it was a Japanese disease when I was still exploring Manga and Japanese culture was a kind of ironic icing on the cake.  It was suggested that I might've picked it up from my travels somewhere.

I was surprised to find out that there were so many people at school who were concerned about me.  They never showed any hint of interest me when I was there, didn't even know about them.  One time when a teacher mentioned that a student in their class was in a coma, I sighed with relief, because it meant that there would be one less person who would butt their way in the lunch line, and also an extra bit of standing room in the bus.  So I was completely mystified as to why there were these people I'd never known or met who were concerned and praying for my health to improve.

Within a week, my blood pressure gradually came back to normal and little by little, the tubes in my body were taken out.  The second-to-scariest removal was the catheter, which was less painful going out than in.  The most nerve-wracking one was the needle in my neck - I couldn't see it, and was told that there was string from the stitches to take out.  I'm a firm component of the belief that "If I don't see it, it doesn't exist".  I'm constantly being reminded of chores that I forgot, because I let them out of my sight for a minute with the intention of going back to them later.  So the fact that there was something on my neck that I couldn't see was basically the "eye sees everything but itself" paradox.  I could've asked for a mirror, but I think I was too uncoordinated to think clearly, and wanted the whole ordeal over with.  Strangely enough, I'm perfectly fine at the dentist when I see the interior of my mouth being operated on, when it would easily disgust other people.

It was thought that I would have to recover for about a week after surviving my ordeal, but through sheer will, I managed to beat their expectations a day early.  Then to my utter shock, I found out that despite my uttermost convictions, I couldn't jump out of bed as soon as I thought.  I was amazed that I could barely stand up after lying in bed for only a week.  I thought it was just an urban myth that your legs would shrivel up and die from lack of use.
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It wasn't fair!  I was free, yet I couldn't move the way I wanted to.  You know that tingling sensation you get when your leg falls asleep?  Multiply that factor by ten, and that'll describe how my foot felt when it touched the ground after a week.  I was also annoyed that I had to do some breathing exercises using a tube with a ball in it.  I wouldn't be allowed to leave until I proved that my breathing was regulated and back to normal by balancing the position of the ball.  Doing these exercises made me feel like throwing up.

Because my Kawasaki happened so close to the winter exams, I was allowed to skip taking them, without having to do any remedial tests.  I've always felt slightly guilty about not participating in my mid-grade exams, even though it's possible I wouldn't have done very well, and most of what I was being taught would've been made redundant and forgotten years later.

As an early present, I was given the latest Calvin & Hobbes book, There's Treasure Everywhere, but the book was so wide that it made reading uncomfortable, and I couldn't enjoy it while lying flat on my back.  I passed the time by watching taped shows of Wayne & Shuster in Black & White on a portable VCR with detachable decoder included.  (This was before close-captioning was mandatory for all TV sets)  Wayne & Shuster are basically Canada's version of Abbott and Costello - a comedy team that specializes in Shakespeare.

I was very lucky that I was still under 18, because if I was at the age of consent, I would've had absolutely no idea of what was going on, let alone have the responsibility to talk to the (mostly French) staff about my Kawasaki.  My parents were able to intervene on my behalf, and helped explain to me what was going on. For that, I'll always be grateful for their help.

On my last day there, on a whim, I took a sip from some small milk containers on a tray.  For some reason, milk consumption is a defining trait of Autistic people, but I seemed to be lactose intolerant in this area.  All of a sudden, my taste buds became accustomed to the taste, and I started downing little milk cartons of the stuff in the hospital.  For the first time, I actually found out what all they hype about milk was about and started downing cartons like a desert man suddenly finding himself in the land of milk and honey.  For the record, I normally can't stand milk products, unless they're diluted with something else.  For instance, I'm perfectly fine with eating pepperoni pizzas, but I can't eat cheese pizza because it tastes disgusting.  By the same token, I only use enough milk to make my cereal slightly soggy.  Too much milk, and I can't eat my breakfast, unless I pour a little out.  I've TRIED to sample cheesecake, and every time I take a bite, I have to push the plate away in disgust.  Ice cream is perfectly fine, though.

That was the ONLY time I actually liked drinking milk.  Sadly, like the Oliver Sacks patient who suddenly could detect strong smells like a dog, this ability went away when I got better, and I've never been able to recapture that same sensation ever since.  I had a similar reaction to the Jello, which was the tastiest product I'd ever tasted, and I wanted the recipe, even though it was most likely just your store brand variety.

Another side effect of the disease was that the skin under my feet started to peel, leaving large swatches of dead skin everywhere.  After a week or two, it stopped and my feet were back to normal.  Then in a year, it started peeling again.  Ever since then, I experience minor peeling from a random body part at least once a year.  One year, it was the skin between my fingers.  Another year, it was the underside of my knees.  This year, it was someplace around a rather... personal body part.  (No, I'm not telling you where)

At the time, I thought my Kawasaki was an extremely rare condition that would've further defined me, since there certainly would be very few speaking deaf Aspergerians who'd contracted Kawasaki late in their lives.  But this may not be so.  Latest studies have shown that people with Autism have a high probability of contracting Kawasaki.  This brought up the possibility that Kawasaki might be one of the triggers of Autism.  However, since it happened to me in my teens, it's more likely a side-effect symptom than a trigger.  It's possible that there's something about the Autistic hyperactive immune system that makes it successible to this somewhat rare childhood disease.  What I thought was a combination of improbable coincidences turned out to be fairly common.  It's disappointing to find out that I was just another statistic.

I summarized my hospital experience in an essay competition, and was pleasantly surprised when it turned out to be a winner, when my previous entries had only managed to get honourable mentions.  In closing, I might as well give the same conclusion as I gave for the essay:

Dedicated to the unnamed doctors, nurses, technicians, friends and family members who stayed the course with me.  Without their help and patience, I wouldn't have been able to write this.

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