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Peginterferon-Ribavirin, Failed it twice. Incivek, Failed it. Sovaldi Olysio, failed it. Harvoni, failed it... Transplant Patient Zepatier and Sovaldi...we'll find out!

Thursday, March 19, 2015

Invisible Liabilities

In middle and high school in the United States, schools have a compulsory physical education department in which students have to be in enrolled in so many years of physical education. Many schools allow opt-outs for special PE like marching band, or certain team sports. Students with special needs often have separate PE programs which cater to their abilities. 

Due to the circumstances of diagnosis, physical excretion was often cited as a reason for the dark urine that day. My doctors ultimately came to the conclusion that it would be risky for me to be involved in PE or any other team sports. Risk to others was a very minor factor, it was because I would be unable to control the constraints of the exercise, and would be at the mercy of often unusually demanding coaches. The school agreed, in hindsight I realize their rationale for the agreement fell more on liability than on my situation. I was pulled out of my PE class less than half-way through the trimester.

My PE coach, knowing why I wasn't in PE, gave me a hard time about as he put it "quitting."
(found out a few years ago he was "let go" due to harassment allegations. Shoulda known he was a quitter.)

Without a class to enroll me, I was placed in the library. I had gained a reputation among teachers and staff as an insubordinate student, which I suspect didn't help my prospects in terms of options for classes. My acting out was due in part to an understanding that at twenty five I would begin a steady descent of my physical ability, that it would be unlikely I would make it to my parents age, and due to my mother's diagnosis and subsequent treatment during this time.
While in the library, I read every comic book, national geographic and graphic novel available. When other classes would come in to use the library I was sequestered off to another area. Eventually when the new trimester came I was allowed to enroll in a class again. I took a class called Lifeskills, it taught teambuilding, Greek/Latin roots, among many other things. 
Without PE, I took ROP classes, and lots of art classes. I went to try out for track and field, and was informed that because I had a PE exemption, I would not be allowed to.

One of the more frustrating issues I came face to face with early on was the reality of an invisible disability.It was the reason my PE coach in middle school judged me so harshly, it was the reason coaches and school administrators didn't believe me. In high school I came in with more or less a clean slate, but I was a liar in their eyes.

I could find nothing to fight it, so instead I embraced it. I was kicked out of classes on a weekly basis. In one class, a drawer was dedicated to taking away the toys I'd bring in. At one point I brought 4 Japanese phonebooks just to see what my teacher would do. In one class I instructed not to leave my seat at any point during the class. So prior to class I found a desk with a seat that could be removed. As class went on, I would periodically leave (taking the seat with me) to buy sodas/food from the machine outside. As he would look up at me, he would see me with different things each time. He was never able to catch me, as I would attach a bolt into the seat to fasten it when class ended.

Each of my teachers knew my situation, they were aware I had Hep C. During student senate elections, upon realizing that I was the winning candidate, one teacher demanded a recount, put a student who had no interest in it as a candidate and declared them the winner. I was hostage to the results my own misbehavior. In the mornings, my classmates would gripe about PE, be exhausted from practice, make new friends from the bonding experiences that come with team sports. I couldn't relate. From my diagnosis, I had never even been in a real locker room. Until I was 22 and I joined a gym, I just assumed they were huge bathrooms with cubbies for your things.
It was then I realized, they were just huge fancy bathrooms with cubbies and lots of naked old men.

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