EDS and School

Hey guys, sorry it's been a while since I last posted. Life has been a little more hectic than usual and my recent diagnosis of POTS (Postural Orthostatic Tachycardia Syndrome) has further complicated things. I've always had problems with very low blood pressure, but the dysautonomia, I'm told, was likely brought on by the surgery and all that went with it, including rapid and dramatic muscle loss. I'm still learning about it and I'm working hard to understand it as well as I can, but this is a new condition for me, so it's taking a while for me to find my feet with it -- and yes, I realise the irony of that statement =P

I've been thinking a lot about my past and the experiences I've had with people since my EDS diagnosis -- mostly, those during school. I wound up dropping out of my final year (Yr. 12, in Australia), for several reasons, but the main reasons were that my EDS was making it impossible for me to complete my assignments, let alone my exams, and that I had developed an eating disorder (Anorexia Nervosa) and the stress of school and the EDS was making it worse. I have also since wondered about the statistics on eating disorders in people with EDS, but that's a whole post all on its own, lol.

I remember specifically two physical education teachers and a music teacher. One of the physical education teachers, Mrs. Bushel, was wonderful. She taught me in Yr. 7, when I was 12 (the final year of primary school, here). This was five years before my EDS diagnosis and we had no idea what was wrong, at this point. She was the first person to ever ask me what I felt comfortable doing and she NEVER pushed me. She saw how badly I wanted to participate and to not be the child sitting on the side lines. She saw how much it bothered me, the way the other kids constantly demanded to know why I didn't have to do certain things and then often didn't believe me when I told them that I couldn't, because I had no real explanation as to why. I have often thought of trying to contact her and thank her, because that was easily the most bearable school year of my entire life where my EDS is concerned, but I'm not sure how to go about it. I remember, one day, she was teaching us about stretching and measuring how far we could stretch. One stretch involved sitting with my legs out straight and my feet against a wooden box that had a ruler nailed to the top and stretching as far as I could, with my hands on the ruler to measure how close I could get to my toes. I couldn't even reach the tip of the ruler, because my hamstrings and calves were so tight. I remember Mrs. Bushel remarking on how it was interesting that I could stand with my knees bent backwards, but couldn't touch my toes, and suggesting I mention this to my doctor at my next appointment. She was wonderful =]

The other physical education teacher was a VERY different story. Her name was Mrs. Stock and, when she was young, she had a deformity of some kind, affecting her legs. She had major surgery on them in her teens and went on to become incredibly athletic, through years of hard work. While this was definitely commendable, I believe that it was part of why she seemed to think that everyone could overcome their physical barriers through exercise and if you were in pain, it was simply because you were unfit. She once made my then VERY overweight friend play basket ball on a 42C day in an outdoor, unshaded court. The poor guy was lucky he didn't have a stroke. She taught me when I was in Yr. 8, at age 13 (the first year of high school, here) and it was absolutely awful. My parents removed me from the school at the end of third term, for academic reasons as well as because of her mistreatment of me, and I have never been so relieved to leave a place in all my life. I remember that at the start of the year, my parents sent a letter to her through the school, explaining that I had problems with my joints and that we were currently pursuing diagnosis, but didn't yet know exactly what was wrong. The letter said that she was to go by what I said I could and couldn't do, because this differed from day to day. It also said that I was not able to run, nor was it safe for me to try, but that I could walk, so there may be activities that I could do at a walk, instead. So when she became frustrated with me constantly saying I couldn't do what the rest of the class were doing (relays, hockey, netball, dodgeball, basket ball, tennis, cricket, etc.), she had me walk laps of the ENORMOUS school oval (playing field) for the entire 90 minute lesson, while the rest of the class were in the gymnasium doing some basic gymnastics, meaning that I was also unsupervised. She also kept sending other students out to check on me and make sure I was still walking -- students whom she knew disliked me. By the end of the lesson, I was in so much pain that when I sat down, my legs cramped up and I was stuck there for nearly half an hour. I had to wait for my legs to ease up before I could set the bones that had come out of place in my feet. When I took off my shoes to do so, she told me off, saying that I was her responsibility and if I stood on something with no shoes on, she would be punished. She also refused to believe that I had anything out of place in my feet.

I suppose that some part of her thought she was teaching me something or toughening me up, which is funny, in a grim sort of way. Little did she know I was probably tougher and stronger then than she could ever be. As was my friend, Stacey, who'd fallen out of a very tall tree as a small child and suffered spinal damage. She could walk, but had a lot of pain and running was particularly painful for her. She also had bow legs, which caused her some considerable knee trouble while she was still growing. Mrs. Stock tried to make her do the same thing as she'd made me do. Stacey sat down on the ground and quite simply refused to move! We used to joke that Stacey was born to be Prime Minister and here it really showed. This tiny, 13-year-old girl, with one very angry, intimidating adult standing over her, absolutely refused to do it and said that, if Mrs. Stock didn't like it, she should call Stacey's parents, because she was sure they'd be perfectly happy to explain why their daughter's long-term health was more important to them than forcing her to complete menial physical tasks, purely for the satisfaction of a sports teacher. Stacey was also always very articulate XD I wished, at the time, that I'd been able to stand up to her the way Stacey did, but I was a shy child and whenever I was faced with confrontation, my brain would fog up and I would shake uncontrollably and sometimes even pass out.

Needless to say, my parents were absolutely outraged by the way Mrs. Stock treated me and made several formal complaints about her, but here the private school system has a definite knack for sweeping things like that under the carpet. I have often thought about writing a letter to Mrs. Stock, explaining the diagnosis I received when I was 17 of Ehlers-Danlos Syndrome and diplomatically pointing out that she is in a very good position to be able to spot EDS in young students...but, once again, I'm not sure how to go about it. I'm also not sure that I could write such a letter without becoming angry and turning it into a rant, which would ultimately achieve nothing.

The music teacher I mentioned was a Mr. Vine. He taught me when I was 17, during the year I got my diagnosis (which happened at the end of first term). I play the piano and drums, but naturally the pain in my hands and wrists (as well as scoliosis) made both of these difficult. I took music class because I love music and I always gave it my best. But if it was a choice between being able to write my in-class assignments for English Literature, Chemistry, History or Art (my four main subjects -- music did not count towards my final grade) and being able to play piano/drums for his class, of course my major subjects would win. But the school required that I take one optional subject and wouldn't allow me to drop music when my health worsened. Every single lesson, he would ask me, in front of the entire class, to play something on piano. Almost every single lesson, after about halfway through the first term, I had to say no, because my hands and wrists were too sore. He would roll his eyes in a very over-the-top way and make some remark to the class about it. I had drum lessons every Friday after school and he would always demand to know why it was that I could play drums in my lessons, but could never play piano in his class. The most important reason was that my fantastic drum teacher, Mr. Corveia, was willing to go at my pace and understood that, although my mind could race ahead and I learned quickly, my body was holding me back. I've also always found that the impact on my joints from playing drums is actually quite minimal, so long as I'm using the right sticks, because I do hold them quite loosely and the rebound from light-weight sticks creates its own momentum. My physio also used drumming to teach me better body awareness and muscle control in my arms and shoulders, and I saw an occupational therapist who helped me find new ways and angles from which to hit each drum, so that I wasn't hyper-extending my joints or hurting my hands. Piano, however, requires me to tense my whole hand, while also stretching or even hyper-extending it (I have small hands) to reach across the keys, and press down with each finger, creating pressure and tension in those delicate little finger joints and often forcing them to sublux or dislocate. When I tried to explain this to him, he scoffed and rolled his eyes and told me he knew my game. Apparently, EDS is a game, now. And here I was, thinking games were fun =P *Rolls own eyes*

I have had problems with many people over the years, but for some reason, Vine and Stock stand out more than any others in my memory. I've worked for people who treated me like a hypochondriac and even threatened to fire me if I "chucked another sickie" (for the record, that was when I had Swine Flu), or if I couldn't do all the tasks that the other employees could, even though these were "equal opportunity workplaces". At the risk of sounding very cynical, I do not believe in "equal opportunity workplaces", apart from places actually run by/for people with disabilities. It's sad and I hope it changes -- that's what we're all working for, among other things -- but at the moment, we're a long way off.

Has anyone else had a similar experience at school, where your health has been made second priority to the unyeilding demands of the system and its minions? Or positive experiences, with one-in-a-million teachers?

*Lecture, lecture, bitch, bitch, caffeine, caffeine, pressure, pressure, grades, grades, grades and say goodbye to your health; blah, blah, blah, got your reputation, stats and figures, you can stick your TEE! Everybody sing! Are you mother fuckers ready, for the new shit? Stand up and admit, tomorrow's never comin'! This is the new shit! Stand up and admit!* <3