I wrote this a few years back as a storyboard for an autobiographical comic I was planning on making. Because of this it has a "young adult" fiction vibe. After two pages of realizing I can't draw, I shelved it - which was a great idea. The last thing people need is another shoddy autobiographical comic. But here it is, it's all about how I have scoliosis. Exciting! It is after "the jump."

In high school I skateboarded every single day. It was stupid. And awesome.

During my sophomore year I was skateboarding in German Village to escape a Christmas family gathering with my stepmother’s kin. I came back to her house with a persistent ache in my back.

To be more precise, it was in the lower right quadrant of my back, along my spine. I had been noticing this feeling off and on for the past couple of months but wrote it off as it always quickly dissipated after skating.

I was complaining about it and my stepmother’s stepmother, Jan, felt my back and said, “It seems inflamed, like this part is higher than the other.”

My mother has scoliosis and was treated for it in the sixties. She had to wear this mad-scientist brace that pushed up to her chin and covered her entire torso. It was sort of cemented into my mind that she had scoliosis since she would always end her litany of back problems (pulled discs, car crashes, vertebrae, etc) by saying “AND I have scoliosis!”

So, of course, my first thought was… so I have scoliosis then.

After telling my mother about this she scheduled an appointment and we went to my general practice doctor who opened up the discussion about the pain in my back by saying, “ So you know you have scoliosis right?”

Well no, I didn’t KNOW that. In middle school there was mandatory scoliosis testing that I had passed and I remember I was even anxious about it at the time since I was genetically predisposed. But it had been four grade levels and a half-foot of growth since that (I’m sure totally thorough) test so this shred of evidence in my “maybe it’s something else” argument did not hold water. And, as I would be reminded, my ignorance of my condition was really my fault because I chose not to play school sponsored sports, which all required the physicals I had never had.

From there I was told I would have to wear a back brace and immediately thought of my mother’s pre-plastic age metal and wood contraption. The thought was more than a bit menacing. I read a lot about scoliosis waiting for my brace to be made. The elephant man had it but then again, so did Isabella Rossellini. Of course I didn’t feel very much like a supermodel at the time so the former clouded my thoughts a bit more than the latter.

My mother and I went to go pick up my back-brace from a place on West Broad Street with an interior untouched since 1973 and doctors that seemed more like Daniel Clowes’ characters than reputable individuals. The brace they produced went from the bottom of my hips to my armpits and was made of hard plastic. I couldn’t breathe in all the way or the Velcro straps would come apart. I made my mother take me to Dodge Skate Park to balance out some of that initial hell. Sleeping in it the first night made me cry. It was so painful. Similar to the first night or two with braces for your teeth I suppose except that it is affecting your whole body.

I was supposed to wear my brace all day, every day with just one exception for sports. So I would wear it over a shirt but under the rest of my clothes each day at school, wearing layer upon layer to hide the bulky plastic. Once this girl Alicia was flirting with me and put her hand on my stomach while we were talking during a class break, “Your abs are so hard!”

Since I could justifiably take off my brace while I was “engaged in sport” I started skating even more as an excuse to not wear my brace.  Meanwhile the “friends” I skated with developed an ingenious nickname for me: CROOKED SPINE. The last thing I remember my friend Nick saying to me before he went to the army and died in Iraq was “CROOKED SPINE” during a dispute over the ownership of a flat rail (I still have a scar from this).

In the U.S.A, the pop-culture representative of people with scoliosis is Quasimodo in the Disney version of The Hunchback of Notre Dame, so I’m not surprised my “friends” from the Westside of Columbus would denigrate me in such a way, but still, it was shitty. It was also perhaps the last incidence of a childhood spent being the butt of one joke or another.

When I went back in for a check-up I had a new back specialist, Dr. Torch, an older Jewish man, also afflicted with scoliosis, who was renown in his field (for Columbus) and one step from retirement - as his nose hairs attested. He declared that my condition was degenerating and that he would have to commission a different, more radical brace. This new brace went digging far into my armpits and enclosed the totality of my hips. It was like a full body cast that had the appendages broken off. When I walked in it I felt like the Sears Tower rocking back and forth with the wind.

This brace was nearly impossible to cover with clothes at school so I had to explain the white plastic coming out of my shirt every day. This combined with the fact that the brace would make me sweat in absurd amounts (not helped by the many layers I adopted in a vain effort to conceal it) made being in school quite uncomfortable. I missed over 60 days in each class that year and over 100 in each of my early classes.

I went back to Dr. Torch after a couple months, about nine months since I first found out about my scoliosis. My back had continued to get worse (excessive skateboarding?) and I now had to decide whether or not I would get another new, even more invasive brace to keep trying the same thing or to have rods fused along the length of my spine which would halve the amount of my curve.

My scoliosis is S shaped which means that I am basically normal looking from the front and back while standing but if I lean over it is very apparent. The other type of scoliosis, C shaped, means you have a hunch in your back while standing so your head is bent lower. (My friend Whitney has that type. She was supposed to move in with me to my first house (The Scoliosis House) but had a kid instead). My curve at this time was around 70 degrees, 30 being moderate with slight pain, 100 starting to affect breathing.

I knew that I wanted the surgery regardless since it was my only opportunity to keep the disease in check over the years as I grew older. Scoliosis is a degenerative disease, meaning that it continues to get worse as you age. Having your spine fused stymies some of that process. So surgery it was.

After hearing the risks of the surgery, which included death and paralysis, I had a conundrum. I was still a virgin and didn’t wish to die that way. Though a couple of girls offered it didn’t seem right. I met a girl named Kelsey who I still talk to but nothing materialized with her either. I went to surgery hopelessly ignorant of the finer things in life. This weighed heavily on my mind. Obviously.

During the lead up to the procedure I had to give blood three times in case I lost too much during surgery. My mother, a staunch Jehovah’s Witness, advised me not to since it is against their interpretation of a biblical scripture but I decided to anyway. My arms soon looked like I was shooting up but the snacks and orange juice were nice.

A week or so before the surgery I went to get the battery of final tests done and was given a liquid inebriant of some sort while a nurse attached all manner of medical ephemera to me. I have a distinct memory of watching the first day of the bombing of Iraq from this vantage point with my father pontificating about the war and the fireworks on the screen all blending together due to the drugs. I left the hospital that day drunk on happy medicinal ambrosia, somehow not caring all that much about the world.

The day before the surgery I was scared but felt the inevitably of it to the point where I didn’t really care. My immediate family including both mother and stepmother were there, something I can remember happening perhaps three times in my life. I had a net of medical appliances attached to me and was pushed in front of a Nintendo 64 to await my entry into the surgery room at Children’s hospital. The staff was used to dealing with toddlers, not angsty teens, and, comically, their behavior didn’t change much for me. A last memory before being carted in is seeing the screen of the Mario Kart game I was told to play.

Inside, the surgery room was an alien interior - cold, concrete, and machine-like. It was strangely egg shaped. They proceeded to give me gas through a mask and I remember zoning out, feeling so heavy, in the middle of a conversation about skateboarding with a prodding doctor. He was one of the ten or so individuals in masks looking down at me, waiting for me to pass into drug-induced coma.

When I finally woke up, I fell back to sleep. And repeated. 

When I was able to maintain consciousness, everything hurt and everyone was around. During the first day of this whenever I would awaken I would hit my morphine pump furiously until I fell asleep. When this stopped working I slipped into incomprehensible monologues replete with drugged quips.

I often awoke to nurses annoyed with their jobs and going through the tedium of their days. At first they were content with fiddling with my catheter, bringing food and drink and other routine maintenance. Then they began to insist on flipping me in bed, a uniquely painful experience for someone whose entire upper-body had been newly opened and added to.

After a few days of this, just when the flipping became tolerable, I was forced to try and sit up. This felt very much like what it was: trying to move with multiple two-foot long rods of metal in your body. I felt like a building or a tree or any number of things that should not bend and move.

This was intensely painful.

The next day I was forced to stand. In terms of things I have done which were unbearable and required untold effort, this was the top. I felt as if I inhabited some other body, one whose controls I had not yet grasped.

The next day, one or two before I was discharged, I was made to walk down the hospital hallway. I am not entirely sure how I did not pass out.

During this week of hospitalization many of my friends came to visit and my family was habitually present. I couldn’t read really and it was difficult to make it through films or television without eventually lapsing back into morphine land. My memories of it are blurred and barely chronological as my experience of time was dislocated by drugs, frequent interruption from nurses, and long expanses of sleep.

After a week, the day of my liberation came. I was wheeled down and out of Children’s and folded into my father’s car. I spent the next few days bed-ridden and surrounded by Jehovah’s Witnesses who mindfully brought home-cooked meals over for their Sister’s anonymous, recuperating son.

My soon-to-be girlfriend at the time, Kate, was my first occasion for leaving the house. At that time I was doing the bizarre things teenagers do before they start drinking and become boring. Dangerous things, both on skateboard and off, like shooting fireworks into fast food windows and having friends surf on rainwater while hanging out the door of your car. The people I was hanging out with, like Jamey, were particularly insane. So, at first, I often felt a little boring – trying not to dislodge my newly fused spine.

Eventually, (two weeks) I began to skateboard again. I was not supposed to do this for over a year. I consider this one of the stupidest, most shortsighted things I ever did but it apparently has not incurred any damage. The first night skating in the parking lot of the Big Bear after the surgery, I spent a half hour re-teaching myself how to ollie, then how to ollie off something. Whatever (non)talent I had with skating before that was completely lost.

I had a free month that Spring, out of school but occasionally heckled by a tutor. I had ducked out of the advanced classes the year before because I despised the premise and consequentially didn’t have to do much to keep current with my more plebian classes, besides Trigonometry. The wrestling coach, Mr. Johnson, taught trig. Which is all I really need to say. The classroom, teacher, and method of instruction can be summed up as being a disservice to life. So, I didn’t do the work and subsequently failed, with the tipping part of the grade being the sheer amount of classes I had been absent for. My whole, “major surgery” excuse held little sway.

When I finally did go back to school, everyone commented on the main redeeming feature of my post-op life: I was three inches taller. People looked at, and treated, me much differently than they did my five foot, six inch former self.

That whole, “major surgery” thing eventually faded into the background, happily resolved. I lost my virginity soon after, to a Ramones record in my basement. School ended and I spent the summer in the bowls and snake runs of various Midwest Skate Parks. I really only had the scar to remind me of the ordeal, as almost all my pain was gone. It ran out of the tops and bottoms of my T-shirts, pink and completely numb.

Six years later, it isn’t something I really think about unless I see someone in public who is obviously suffering from it, like a man I saw at Comfest a few years back whose shoulders seemed to be walking beside his hips. Occasionally, if I have been doing too much manual labor, my back returns to that dull, persistent ache I first noticed. But that is a rare occurrence in a life spent inside classrooms, museums, and basements.

To topically end my story, I have to say I am forever in debt to the fact that I had health insurance at the time due to my mother’s job at The Ohio State University. The cost of the procedure and hospital time totaled 50,000 dollars, a sum we had to pay exactly none of as it was completely covered. If we had not had insurance I would either continue to having worsening back pain with a possibility of encroached ability to breathe by the time I turned 30 (and death not far after) or my family would be in the kind of debt that we would be paying long after I turned 30.  That many kids like me are put in a situation where they have to pick between the health care they need and the financial health of their family is reprehensible and indefensible in the richest nation on Earth.

Universal access to affordable healthcare isn’t a matter for debate. The end.

1 comment:

Yoanna said...

Having the same condition but havent got an op and Im glad youre a-ok now!