A while back, I had an epic battle in my mind with the president of my neighborhood’s H.O.A. (which actually stands for Herd Of Assholes) – and I mean EPIC. I ripped her a new one so big that you couldn’t tell whether she was wiping her butt or blowing her nose anymore.
Today my brain decided, unequivocably, that I should be dead. I didn’t ignore it.
I noticed it. I thought, “huh” in response. Then I continued doing my laundry.
I struggle with where to begin my story. Every day.
I ponder for a good couple hours while I have my morning coffee, take my a.m. pills, shower, drive to the doctor’s office, eat dinner, watch Blacklist, play Tetris, take my p.m. pills, read myself to sleep,etc. You name it, I’m wondering where to start. I’m wondering where to start so much that I can’t, and that is how you find yourself with a really stupid case of writer’s block.
You’d think someone with so many places to start wouldn’t have a problem. I’d expect to have some sort of typing diarrhea; not verbal constipation.
Then I start to consider the physical and philosophical properties of time. When one begins to truly delve into the definition of a beginning, a true start to a tale to be told, you get the urge to find out When, and your When can be defined by a number of things. It can be defined by a What. What was most traumatic? That’s not a great place to start if you want to be kind to your reader. I’m not overly enamoured with coddling my audience, but I’d rather not inspire my reader to get up and leave within the first five minutes of my story. And believe me, I have that ability. Don’t let my gently dissheveled and frumpy demeanor trick you into thinking my life is full of mild moments of clarity, no. I’ve got more gross and horrifyingly uncomfortable stories to relate than you, or I, for that matter, could possibly stomach.
Last Thanksgiving I was banned from telling stories at the dinner table while people were eating.
“Pshshshsht. Amateurs,” I thought. Then I looked around me at my family, the people who, during the past 42 years, either heard these stories during a meal enough times to be true authorities on which of my stories are nauseating and which are not, or were witness to and participated in the clean up. I also saw my new-ish sweetheart sitting beside me, who had been doing an absolutely stunning job of charming my parents, making friends with my little sister and actually making my mother laugh.
“Really?” I whined. “But I always tell these stories. You guys think they’re funny.”
The people at the family restaurant seated around us who were enjoying their Thanksgiving dinners probably wondered what table game we had brought with us. Or was it charades?
“Really.” My Mom chuckled. If cleaning up my bodily fluids earned you a merit badge, my Mom would be the equivalent of an Eagle Scout, or whatever the highest rank of Boy Scouts equates to for motherhood. I can’t really argue her on this point. Although, in my defense, she tells the same stories at times. So this really was probably her fault.
“But it IS funny …”
I slumped into my booth seat and played with my mashed potatoes. I had already convinced my parents to have Thanksgiving at a truck stop diner (shut up, the food is fine if you’re hard up for a traditional turkey dinner at the last minute in Portland), and despite some deep and understandable initial misgivings, my sweetheart had fully particitpated thus far in the day’s festivities.
“Are you really grossed out by it? I mean, you were THERE.”
“It’s not that we don’t like your stories,” my mom started.
“OH MY GOD. HOW LONG HAVE YOU FELT THIS WAY??”
She and my father shared a glance, and my sweetheart may have interjected that we could just hear the stories later, at home, or maybe much, much later – as in never, or at least after everyone had cleared their plate.
“I don’t mind,” my sister offered, as she continued to eat. She’s 14 years younger than me, which means I was the Built In Babysitter. Her nonchalant attitude was clearly a sign that I raised her right. It also told me that my parents and sweetheart had suddenly acquired sticks up their butts.
“Alright.” I conceded, strictly to show that I COULD in fact be civilized, and was, furthermore, full of the holiday spirit. I was going to spirit the SHIT out of this holiday.
But I was not going to eat the sweet potatoes, because they tasted like dessert, and I don’t want my dinner to taste like dessert. I want my pie to taste like dessert, and getting rid of my sweet potatoes got me that much closer to pie. I gave them to my sister as a reward for taking my side. She was stoked. I ordered pumpkin pie, with a side of mild holiday resentment. Too gross for dinner. Whatever.
Several minutes of somewhat comfortable silence followed. I swear, my family is secretly Lutheran. We do have Scandinavian roots. They really should have acknowledged at that point that I carry the conversation at meal times, and thanked me.
I can’t say that Thanksgiving dinner was ruined, though, because I come from good people. My sweetheart was also solid, we’re still best friends. And I have a super sharp eye for a clean plate.
“OK, everyone done? Let me tell you the story of The Biggest Snot Balloon Ever.”
I have been wide-frickin-awake since 6:30am. I got a few hours sleep; aside from insomnia, my hips are raging sore from bursitis. Not only could I NOT sleep, I could not find a comfortable position to lay in.
I can’t do it today. Just can’t. I can’t rely on my brain to be … functional. I can’t live in this body comfortably. That’s not to say I want to die. In fact, I think this uncomfortableness may be a driving force keeping me alive.
I long for those mornings when I wake up easily. I open my eyes and there’s a gentle morning light in the air. I have, somehow, reconfigured the pillows in my sleep to the perfect nest around my body, and it feels GLORIOUS. Nothing hurts, no nagging aches, and for half a second I feel like I could bounce through the next week like Tigger.
Today in more Eeyore stuffed with Tigger and Rabbit.Rabbit is such a worry-wart, and crabby.
The pain isn’t always raging, and it isn’t always pain that knocks me down. It’s the endless hours of not being able to find a comfortable position to just BE, and not be thinking about body parts that need rearranging. It’s incessant. There isn’t a moment in which my mind isn’t simultaneously checking in with various body parts to see how they feel. My brain is like a mother of 3 year old octoplets with Tourette’s – exhausted, drained, incoherent, delirious. Frustrated. Angry. Then add some more pain on top of that on a bad day.
Today I did not wake up in my perfect nest of pillows.
But I might tomorrow.
I was sitting in a coffee shop once, back home. There were two homeless men seated near me, doing what a lot people do at coffee shops on a weekday afternoon – sharing stories. As people often do, they got louder and more adamant as they compared their tales. The sun bounced off of the honey colored wood floor and my hand gripped my unbleached porcelain mug as I tried not to look like I was listening.
They were vagrants on principle. They had chosen this lifestyle. One of them rode trains, and traveled according to the weather. The other caught rides from friends. Sometimes they had to sleep outside, on the floor or in cars instead of on couches or beds. They had to move a lot. They’d been in city after city, state to state; never knowing what would happen next. All understandably uncomfortable predicaments.
Unbeknownst to them, while they were sharing their Jack Kerouac yarns, I was staring at my cup of coffee and my mind was screaming. When they left I was in tears.
Savor your freedom. YOU HAVE A CHOICE. I DON’T. I would do ANYTHING to just have the option of trading places with you.
At 23 or 24, I was ready to enlighten a pair of middle aged men on the value of free agency and the blessing of adventure. This wasn’t about the politics of choosing to be house-free. This was about waking up in the morning and knowing that you can do anything.
At the time, I was working at a cell phone company. After the initial shit storm of my diagnosis cleared a little, that was the first thing I had had to do. I was too old to be on my parent’s policy. I knew jack about insurance policies, and I was ramen-for-dinner-every-night poor. I had no other option.
It was an entry level job. It had nothing to do with my interests. It didn’t matter. My doctors and medications kept me walking, and the job enabled me to see them. I was chained. That’s the way it’s been ever since, for the past 17 years now.
It wasn’t until I had overheard that conversation between the two philosophical vagrants in that coffee shop that I realized how bound I was to my employment. Yes, I had bills, food and rent to pay for like everyone else. But unlike most people in the U.S., being unemployed meant losing the ability to use my body at all. I know this for a fact. It happened.
I cannot explain the terror. It is a visceral feeling, down to my guts. Losing my medical care triggers instincts in me on an animal level. No health care for me means that I will be without meds, and thus , and thus unable to walk, roll over in bed, wipe my own ass, or chew my own food. Then there’s the excruciating pain, and the emotional humiliation.
I had to go off meds for a while during a med swap. My right knee was swollen to the size of a football. It would not bend, and trying to walk on it would have damaged the joint further. The wheelchair that I had was set up for someone with a cast on their leg – the right leg rest sticking straight out. I spent most of my days in a recliner. My mom would puree my food and spoon feed it to me, or give me a straw to use. I still remember drinking her pureed spaghetti and how grateful I was to taste something other than creamed oatmeal.
When I had to use the bathroom, both of my parents would put me in the wheelchair, and then muscle me onto the toilet. When I was done, one of them would have to come in and wipe me, then get me back in the chair. This would be bad enough in a family that was comfortable with nudity, but we aren’t. Picture the stereotypical conservative Norwegian family a la Garrison Keillor.
At the time I didn’t have the mental capacity to consider things beyond the pain I was in. God bless my parents. Now that I have some distance from it (although there could never really be enough), I feel the deepest gratitude for the patience, love and the respect they showed me. And as a show of mutual respect for them, we do not speak of having to help me go to the bathroom. Ever.
This is why I turn into a rabid badger at the mere hint of unemployment. There are two roads in my life – having insurance, or having someone else wipe my ass. Being the existentially obsessed creature that I am, the very idea of having those two things as my only options in life is horrific.
So life is hard while hopping the rails to ride to Montana this summer? You ungrateful son of a bitch. That sounds like a dream come true to me.
Truly, I would love to be a “traveller” and roam where and when I may. Hopping a train and sleeping under the stars? SIGN ME UP. Only having to worry about food and shelter would be SUCH a relief. If I could sleep through a cold night under a tree and wake up to hike over a mountain the next day, I’d be in heaven.
Instead, I was stuck. My life literally depended on my job, and my job was filing. I can make anything (except having my ass wiped for me) fun, which is a huge blessing. I can also compartmentalize and suppress emotions like a mo’fo. So that is what I did. I took my dreams of actually doing something with my freshly minted Theater degree and carefully stowed them in the deepest, darkest places of my mind. That wasn’t important any more. Survival was important. I had to keep this job, and I had to go to school again to get a useful degree.
I opted for Digital Media, and I went for free at the local Community College. It worked out on two fronts: I gained useful skills and it kept me from stabbing myself in the face from boredom. I needed the intellectual stimulation almost as much as I needed the insurance. And I learned the most valuable skill that I’ve ever made in my life.
I learned to make do.
If that’s the best I could physically and mentally do at the time, I learned to be fucking proud of that. If I wasn’t proud, I was in despair. My new dream was to maintain the status quo, and dig my grip ever deeper into the safety of employment.
People now are sometimes surprised to hear that I have done quite a bit of stage acting. They are intrigued that I’ve directed plays, been a stage manager and run light boards. Given, it was community theater and college, but we put on some damn fine shows. I also have bragging rights to my animation skills, graphic design, basic knowledge of sound and video and other media related computer skills. Then they kind of get that look. It’s similar to the “You don’t look sick” look, but is slightly more … confused. “Why didn’t you do anything with your education?” it says.
To that look I say, for the same reason I haven’t hooped a train to Montana. Certain ventures in life, like career advancement in particular, involve taking risks, and my health would not afford me that. I did what I could in between arthritis flares and other complications. Unfortunately the times in between were never long or profitable enough for me to quit my job, pay COBRA rates for insurance, move to the city and then work as an intern at a theater or production company until I got a placement in a position with benefits. I did not have the money. I did not have the physical capability.
So I made do, and I was proud of that. But man was I ever envious of those two hobos.
I make up new curses when my pain gets too overwhelming. “Son of a biscuit”, “fuckdoodle”, “shit sticks”, and “bastard son of a fuck” work well. If it’s really, really bad I’ll groan and maybe yell a little, just to get the energy out. Kind of like a berzerker readying himself for battle. You have to wind up your will to fight some how, and the primal groan of pain – in all honesty – helps. I don’t know or care why. I suppose it’s some instinctual neural programming our species has developed for some benefit. Some command to bring forth or stop something.
Like “Red Light, Green Light”. We didn’t play that when I was a kid. The more common game – if that’s what you could call it – was to put someone in a headlock or bend their fingers backward until they cried “Uncle!” We were a more hands-on generation.
But the concept is the same. It takes different forms as we age; from “Red Light” as toddlers and “Mercy!” as adolescents, it morphs into “Unicorn Banana Rainbows” as sexually adventurous adults, and “she signed a DNR” when we are close to death.
This isn’t fun anymore. Make it stop.
In between “Red Light” and the DNR, there are many days that make you wish for either one.
SHIT STICKS!! This is the best I can do. I’ve crossed my finish line for the day, I’ve won my very short race. Don’t ask anything else from me.
Those are the days when just showing up is a victory. It’s not that I need a pat on the back for existing – although I am very partial to high fives. I just need for life to not ask anything more of me until I have the stamina to do it. Sometimes I don’t even need that. I just need patience. Maybe a quiet place to sit or lie down for a moment.
When you’re really really tired for no reason at all, and you’re just trying to make it through the day, it’s like carrying two year old triplets who are having the biggest tantrums of their short lives. You can’t hear anything over the screaming pain. You don’t see much past the beet red faces and wailing mouths. All you can feel is the hot swollen limbs clinging to your body and the wetness of angry, sad tears.
Shhhhhhh! Shhhhhhh! For the love of FUCK, please shhhhhh! ASS LLAMAS.
Not that I would actually say fuck to my actual child. I mean, it slips out from time to time, but I wouldn’t say it TO my child. At least I hope I wouldn’t.
These invisible babies, though? Oh yes. I’m cursing them as I sit at my desk and my hips are grinding in their sockets. I’m screaming right back at them as my elbow swells and starts to feel like a rock. I am focused. I am cussing at these invisible triplets, and I don’t have time or energy to explain it to you.
Can’t you see these invisible triplets screaming at me? What’s WRONG with you? FUCK BANDITS!!
Right. They’re invisible. To you.
But like that desperate mother in the grocery store, I’m probably going to snap at you if you ask the wrong question at the wrong time. I’m too tired and too sore to think about manners or be … informative. It’s going to come out loaded with all of my frustration from the situation, and we’re both going to regret it.
Instead, I think we should be able to cry “Uncle!”, “Red Light!”, “Sparkly NERFERTERS!!” or “Abracadabra!!” And when we’re in the middle of a conversation, grocery shopping or walking down the street of a busy city, you’ll know that I don’t actually have Tourette’s, but that I am simply at my limit and cannot deal with any further external stimulation.
It will save me the effort, and you won’t have to listen to me whine. Really, it’s a win-win. And it’s probably more socially appropriate than “bastard son of a fuck”, but not nearly as fun.
I don’t like public pools. I also don’t like white clothing, no matter what time of year it is, or shorts. I refuse to wear shorts. I won’t sunbathe, or wear short sleeved shirts in public. I don’t like tight clothing, or thick stiff fabrics (I would suck in the Navy).
But I’m not the Grinch Who Stole Summer – although that would make life a bit easier for me. I have severe psoriasis. I have it everywhere.
“Do you have it in your intergluteal cleft?” a young doctor once asked me. He had very intense blue eyes, hair that looked like it came out of a mold, and Superman’s chin.
“Intergluteal cleft” he said more slowly, as if that would help the words make sense to me. It did.
“You mean my BUTT CRACK?”
Let me take a moment here to explain a bit about my relationship with doctors. I am simultaneously a young doctor’s wet dream and worst nightmare. They walk in the room after reading my chart with stars in their eyes. I am like the only live creature in a freak show. I go to a teaching hospital, which means the senior doctors will literally bring their interns in to my appointments for “show and tell”. This usually doesn’t bother me one bit. I am ALL FOR doctors learning about the conditions I live with.
Yes, for fuck’s sake. Study me. Take a real good look. Learn the difference between pustular psoriasis and dermatitis. Be able to tell the difference between Behcet’s Disease and Herpes Simplex, and you may avoid ruining some poor girl’s life.
I’m a fascinating medical oddity to young med students, and they can’t wait to check me out, but usually an appointment or two with me, and those stars in their eyes fall with the downcast glance as they hear all of the unsuccessful treatments I’ve tried.
Poor Baby Doc. I too once held the hope that you’d bring me a cure. There, there, now Baby Doc. There, there.
But sometimes I’m in a mood, or maybe the Baby Docs just look a little too much like a super hero wanna-be for their own good. Misplaced confidence has no place in the medical field. That’s when I’m there to bring them down a notch.
Doctor Superman couldn’t bring himself to say the words “butt crack”. So I said it a little bit louder.
“Are you asking if I have psoriasis in my BUTT CRACK? Yes, I do. I HAVE PSORIASIS IN MY BUTT CRACK. It hurts. WHY??”
He turned a very amusing shade of pink and took notes.
That’s the thing about some of the baby docs; once they’re done with their rotations, they get to apprentice in an office. All this means is that the Doctor in charge of you gets to send you in to the office to do all of the dirty work. Then after they’ve asked all of the humiliating questions, the Real Doctor enters the room like a rock star, takes a quick glance at you to confirm or correct Baby Doc’s observations, then prescribes something useful that will solve the problem. Baby Doc is left in a cloud of Real Doctor dust; all of the work and none of the glory.
On that particular day it was a 0.5% cortisone cream, but enough about my butt crack. I was talking about public pools.
I look like a drunk toddler attacked me with pink and red markers. I am not kidding. I have pink and red splotches all over me that come and go. Some of them leave scars. Others, like the patch that takes up most of my left shin, never go away.
Sometimes it looks like the measles, or chicken pox. Other times it gets really scaly, and I can tear tags of skin off the size of corn flakes. It will develop thick, white “plaques”. Get those in the right place, and they crack. Then you have what I assume is called a “fissure” which is basically a crack in your skin that doesn’t heal.
Those fissures, and sometimes the skin under the large flakes that come off of me, will weep a clear liquid. You’ve seen it when you pick a scab too soon. It’s your skin’s moisturizing heal-cream or some such. That shit will dry and make your skin stick to your clothes. You don’t notice it right away. Then you move, and suddenly you’ve waxed a random part of your body, except that body part didn’t have any hair, and you just ripped a small part of you off with your shirt.
Blood is way stickier than the clear liquid. And it really sucks when you get it along your bikini line, let alone your “intergluteal cleft”. Imagine the feeling of someone running a sharp knife up your butt crack every time you take a step. That’s what it feel like when you’ve got psoriasis in your crack.
Psoriasis isn’t picky. Psoriasis is much like the Honey Badger, and it really does not give a shit what you think. It’s gonna go where it wants, when it wants, and do what it wants.
In fact, that Honey Badger probably has psoriasis in its butt crack too.
But aside from the pain and weird splotchiness of it all, it itches. It itches worse than anything I’ve ever experienced. It’s the kind of itchiness that will drive you mad. Literally, it makes you kind of crazy. I have had moments when I scratched until my skin was raw, and still not had any relief. It’s an itchiness that truly makes you want to scream, cry and rip your own skin off, and it really isn’t something that’s part of a healthy, productive lifestyle. When you fantasize about ripping off your own flesh like a possessed person in a horror movie, going grocery shopping at the neighborhood store can be … awkward.
The relief you feel from scratching isn’t decent either, but that isn’t because of the pain. The satisfaction you get from scratching that itch is best left behind closed doors or with your intimate partners. It’s the kind of satisfaction that digs a buzzing laughter from the bottom of your gut that tickles the tip of your nose. It’s a reflex, it’s unstoppable. It makes you feel like a junkie getting a fix. It might be the second best thing to sex. This is particularly awkward when you’ve got psoriasis up your nose. No one wants to feel that good while picking their nose. Just trust me on that.
Then there’s the blood. There’s the blood from the fissures, the blood from the flakes. The blood from the scratching. Not that I ever wore a lot of light colored clothing, but I had to give almost all of it up, because I got so tired of cleaning blood spots out of my clothes. It usually isn’t much, unless I’ve been scratching. I have had people pull my hand away from my body, only to find my fingers and fingernails encrusted with blood. I don’t even notice.
There are the occasional benefits. I’ve had dear ones who lovingly took the time to apply ointment to the spots on my back, one by one. “Anointing” they called it. I’ve had my spots called “constellations”, or “braille that says ‘I love you’ over and over.” I’ve been told it makes me unique, that it’s actually kind of iridescent and pretty. I want to believe them. I do. I try to tell myself that a map to a fantastic world is surfacing on my skin and sinking in the tides of my flesh. An invisible painter comes to me in the night and paints my body like a canvas. One of the benefits of always having brand new skin – psoriasis is the immune system attacking the skin, causing the rapid dying off and replenishing of skin cells – is that it is very sensitive. That can make a tender touch blissfully overwhelming on a good day.
I am ever changing, a chameleon. I am unique, even from myself.
It creates a very odd distance between me and my skin. I often feel like an unwelcome tenant. But I am here.
So you’ll forgive me for not donning my itsy bitsy teeny weeny bikini and running to the nearest pool full of kids on their summer break. Even when shopping at my local Target, I’m mindful of the glances I get when my patches show. I can’t really blame them, they don’t know that I’m not contagious. If I was in a pool of water, I’d be nervous if someone with open wounds came at me in their birthday suit too.
My birthday suit and I have a complicated relationship.