March 24, 2016
6:30am
I am an
introvert with isolationist tendencies and darkness is a friend that gives me
hugs whenever I need one the most. At home, I never open my curtains unless I
have to and, if I had my way I’d open the door only when the pizza deliverer
brought my latest attempt to quell my pain. I am also seldom awake at this time
of the day unless I have been awake all night. So, the fact that it’s so bright
in here at 6:30 in the morning with not a window to be found is unsettling, to
say the least. Neither my body, nor my mind are, accustomed to this and I am
struggling to make sense of my surroundings. The word that comes to mind is “antiseptic”,
which I suppose is not a negative thing, especially as far as the staff is
concerned I suppose. That said, being up so early has made me wish I could see
the sunrise this morning. At the very least, it may give me a feeling of
change, rebirth, of hope.
They took
away all of my clothes when I was admitted to the hospital. A pair of light
pants was courteously, and laughably, offered but their meager size rendered
them useless to me. So, I am wearing two hospital gowns; one with the untied
opening to the back and the other with the opening to the front, like an untied
kimono. They are far too short and I seem to be constantly threatening to flash
anyone who walks past, even when I am lying on my gurney with a blanket over
me. It’s the closest I’ve gotten to wearing the kilt I’ve wanted to try on
since I first saw a video of the highland games.
As
uncomfortable as my outfit is making me, it’s the socks which are the most
frustrating. I am not a sock person and footwear of some sort is mandatory
here. I like my feet to be cold and these things are like little ovens for my
toes, so much so that my piggies are beginning to resemble bbq pulled pork, I’m
guessing. Sure, they aren’t cheap and even have a rubberized non-slip tread
complete with happy faces but they are making me quite uncomfortable.
I’ve been
up for three hours now and since no other patients are awake, the nurse on duty
has allowed me to sit in one of the interview rooms to write this. I am very
appreciative to her for the slight rule break. It’ gives me a small sense of
normalcy, something I didn’t realize I was missing until right this second.
Sitting in an uncomfortable, cheap office chair from 30 years ago is a comfort
I never thought I’d appreciate but considering the pain I deal with every day,
I suppose I should have gotten to this point before now.
I don’t
think that most people understand the irritating and embarrassing feelings that
psoriasis sufferers deal with on a daily basis, the flakes, the crusty skin
itch and the constant pain of arthritis. From a secondary point of view, it’s
hard to ignore the blatantly obvious flakes of skin but I have to wonder how
many actually understand the embarrassment which accompanies them. Of course,
those flakes come from plaques which often cover large percentages of our
bodies turning our skin into, at the best times, an itchy hive-like scab and at
the worst of times are akin to setting our skin aflame. What’s hidden from
everyone is the arthritis which often comes with the disease, as it has with
me, and has been a literal pain in my ass since my early twenties.
Psoriatic
skin flakes get into and onto everything. It doesn’t matter how often you
vacuum, how often you change the sheets or how often you clean your entire
home, there will always be flakes you missed. As a child, the flakes that my
mother would leave on the floor, especially in my parent’s bedroom fascinated
me. I would look for the big ones, often the size of dimes, and study them.
They were light yet thick. They were almost crispy, the way they would crack in
half when I applied pressure to their outside edges. Some kids pick their scabs
and are fascinated in this way. I had an almost unending supply to make me
wonder about the way the skin worked, growing and healing. It wasn’t until my
later teens that the flakes began to show up on me. Like dandruff, it was
coming off my scalp and suddenly high school became a battle against my own
body. How many 17 year olds do you know who carried around a lint roller in
their backpacks? At choir competitions, I would lend it out before just before
we performed ensuring that I was the last to use it because if I had used it
first, by the time I got it back only a couple minutes later I would need to
use it again.
I found myself
near constantly brushing my shoulders, pulling at my shirts and letting them
pop pack to my shape in hopes of forcing the flakes to release from the fabric.
The battle of the snowy shoulders is one that you can never win, so at some
point you just accept it and do the best you can. You begin to avoid dark and
solid coloured shirts. You accept that others are going to see the flakes and
immediately judge you with rather pity or disgust. When I turned 19 and began
going to dance clubs, my friend pulled me aside one night and pointed out my
shoulders. They were alight with little star-like sparkles, my psoriasis flakes
glowing in the black light that was popular back then. I was horrified because
even in the near complete darkness of cigarette smoke filled clubs, my
shoulders were shouting “I’m a gross slob!” to anyone I would meet. Women get
stared their chests stared at and to a degree I understood how they felt
because my shoulders were getting stared at. The difference is that one
attracts members of the opposite sex while the other repulses them.
As bad as
my scalp psoriasis was, my cousin had it far worse that the same age. At twelve
years old her head was covered in a layer half an inch thick over a four to six
inch diameter area. Her early teen life was an exercise in finding equilibrium
between the pressures of burgeoning womanhood and trying desperately to not
have her entire school know her secret. She was however lucky in that it
remained only on her scalp and was able to find medication which would control
it enough to keep it at bay until her body grew out of it. I was not so lucky.
Eventually,
parts of my body other than my scalp had breakouts, especially my back,
stomach, groin and shins. I began having to tuck in my shirts or avoiding black
pants as flakes began to appear on my hips if I was wearing my shirt loose. If
I had been wearing my shirt tucked in to contain them, the minute I untucked it
a blizzard would appear and it no longer mattered what I was wearing because
there were so many flakes that I would leave a patch on the floor below me.
What had once fascinated me as a kid exploring my parents’ bedroom had become
an embarrassment so bad that I refrained from going to pools, waterslides or
the beach. I was terrified of what strangers thought of me already due to my
anxiety but now I was actively turning down invitations out with friends
because I was worried what they would think of me.
My bedroom
was becoming uncontrollably dusty. Entering it was like going in search of the
home movies of your childhood, packed away years ago. On them were the images
of a carefree childhood, now so distant that you can’t recall the emotions
which made you smile at twenty four frames per second. Replacing them was a constant
reminder that I was different, judged, and, as far as I was concerned,
unlovable. While my friends were having relationships, I was the guy sitting in
the corner longing to be them but certain that I could never be. Looking back
now I can see that women were interested in me but I couldn’t conceive of that being
real so even when women threw themselves at me, I didn’t even respond. The girl
giving me a picture of her with her phone number on the back was just being
nice. The roommate climbing into bed with me one night was just being playful,
not wanting me to stroke her body. The girl in the bar standing two inches from
me with her hand on my chest and dragging her fingers across my skin was being
strange.
I had
gotten used to the assumption that I was different than everyone else. It isn’t
that this feeling was without merit for there were times when people would
ridicule me for the strange patch of skin on my forearms or my shins. I also
didn’t blame them for feeling this way. I can easily understand how a bad
patch, or plaque, would look like a communicable disease. People with eczema or
shingles are treated in a similar, despite general knowledge of these diseases
in the public being far more prevalent. We tend to fear of what we don’t understand.
This evolved response has protected us through the millennia but I have seen it
used far too often in today’s society, to justify prejudice, bigotry and willful
ignorance. The error I made was assuming that because one percent of people
were judging me like that, so was everyone else.
One day at
work about ten years ago, while waiting on a table a child of about eight years
old pointed at the large plaque that had recently formed on my forearm and
asked me what was wrong with it. His mother immediately scolded him for being
so rude. Had I left the situation like that, the boy would have learned the
lesson that his innocent curiosity was something to be curtailed, that trying
to understand the world around him is not something to be embraced and encouraged.
Neil DeGrasse Tyson says that “We spend the first year of a child's life
teaching it to walk and talk and the rest of its life to shut up and sit down.
There’s something wrong there.”
To the
parent’s chagrin, I corrected them, getting down on my knees to be at his level
so as to minimize the trepidation on the child’s part. I softly explained that
I didn’t mind being asked and what the sore on my arm was, why he couldn’t
catch it and asked if he had any other questions about it. I find it very
important to speak to children about these types of things at their eye level
while talking to them as you would an adult. You don’t have to use big words
but there’s no point in dumbing it down either. It’s surprising how many
“mature” things you can talk to them about without upsetting or overwhelming
them. Unfortunately, the parents didn’t agree with me and lodged a complaint
for contradicting them to their child. I hope that boy learned something from
that interaction before his parents had the chance to drill it out of him.
One thing I
hadn’t counted on when the plaques first started to appear was how uncomfortable
they could be. At their best, they are best described as a slightly sensitive sunburn;
mildly itchy and painful at the same time. At worst, they are like poison ivy
rash covered in bee stings. And the things which can turn them from mild to
hellish are varied and seldom predictable. What does not affect them for 364
days will send them into a firestorm on that last day of the year. Eating a
tomato can do it. Being around a smoker. The wrong soap can set it off. A single
stressful moment at work or a bad night’s sleep. It’s virtually impossible to
nail down what single thing triggered the inflammation but it is not ambiguous
when a flare-up occurs. I have had nights where I lay in bed desperate to not
scratch, only to find myself unconsciously doing so to relieve the itch and
then discovering that my sheets and legs are covered in blood in the morning. I
once had a friend tell me that my scratching was making her uncomfortable
because I the sounds I would make as I relieved the itch were like “someone is
sucking on your dick”.
Trying over
the counter creams were a laughable attempt at stopping the plaques from
becoming so irritated often making things worse rather than being helpful. The
few topical choices which would work were by prescription only, difficult for
two reasons. Firstly, I could not afford the steroid sprays which worked the
best, over a hundred dollars for a two week supply for only my forearms and
scalp, and second because getting them would entail me paying for my medical
insurance and actually going to a doctor. I hadn’t been to a doctor since I cut
my hand after falling on and shattering a drinking glass when I was 13,
requiring emergency surgery, seventy stitches and two nights stay in the
hospital. Perhaps the only thing worse than my anxiety triggers of women was when
I was forced to deal with doctors and dentists. It didn’t matter that they were
professionals who had surely seen far worse. Opening my mouth wide or disrobing
in any manner was to be avoided at all costs, lest the other person in the room
voice their displeasure with my appearance.
As a
result, the psoriasis plaques spread over more and more of my skin, eventually
beginning to form on the backs of my hands, so long sleeve shirts no longer
covered them. The spots on my shins expanded from the tops of my feet to my
high on my thighs, wrapping around to the backs of my legs and knees, a particularly
painful and itch place to have them. They also began to show up on my face,
neck, eye lids and ears. The once small spot in my groin turned into a patch
which ram from the top of my bum crack all the way down and up again, reaching 3
inches above my genitals. The one half centimetre patch on the tip of my penis
was like the pièce de résistance. At one point in my early twenties, I had
begun a sexual relationship with a girl I had known since I was 14. She’d had a
crush on me since we were that age so I was able to accept that she would
consider a physical relationship. Unfortunately, her claim of a latex allergy
meant that our dalliances were done without protection, and the patch of
psoriasis made sex incredibly painful at times. One night it was even so
painful, as if there was an Exacto knife and a vat of battery acid in her
vagina, that I had to fake orgasm so that I could end it.
If I had
been able to keep the flakes at bay and hide the plaques under clothing I
would, at the very least, be far more comfortable going out in public but eventually
the patches began appearing on the backs of my hands, my now quite bald head
and even on my face. People had begun to stare at me, not like a man stares at
a woman in yoga pants or a dog makes eyes at a piece of pizza from across the
room. They were staring in wonder, fear and in some cases, revulsion. When I
had finally convinced Chrissy to go out with me, after years of trying, it
turned out to be a one date and gone situation. I found out through a mutual
friend a couple years later that her friends had convinced her that I wasn’t
”pretty” enough for her, confirming what I had always feared. I was being
judged by women, including the ones who were very attracted to me, the way I
had always feared except that now it wasn’t my weight or my looks. My skin and
immune system had conspired to keep me single and although it was something
that that I had always felt I deserved, to that point I had still had hope that
I could change it. That day I acquiesced. I was going to be alone. Forever.
