Sunday, May 22, 2011


I cannot get rid of it.

During the summer holiday between 5th and 6th grade, I spent a lot of time sitting. I sat and watched t.v.. I sat and drew pictures. I sat and sewed. I sat alone waiting for my mom to come home from work each day.

Sometimes I played with friends, and I a few times that summer took the greyhound bus to a town in Ontario to stay at my grandparents cottage or to visit my aunt.

But what I did most of all was sit at home. At some point that summer I began to notice that my back hurt when I sat for too long. I was 11 years old and I didn't think to tell anyone about it.

I entered grade 6 and sometime in those first few months of school I went for an appointment at the local Shriner's Rehabilition Centre for Children. My Dad picked me up from school to take me to my appointment. Honestly, I didn't hear much of what the doctor's were saying. I was angry about missing the rest of school that day and I was anxious, because when my Dad and I arrived at the reception desk I was told to go to one of the changing rooms, take everything but my underwear off and put on one of the terry-cloth robes hanging inside the changing room. For the next four or five years of check-ups at the Shriner's I would go to the reception to check-in, and then go to a changing room, strip down to the bare essentials and choose one of the many multicoloured striped robes.They were all too big for me.

The receptionist at the clinic was this lovely older lady named Mrs. Honeybun(? honey something...). Whenever she got up from her desk the first thing that was obvious was that her back was extremely deformed. Her back had a huge hump that looked like she was carrying an ant hill on her back. Her body twisted down and towards the right and her head was in an incredibly awkward position as she walked. I had no idea why her back was that way...I thought at first that she had Spina Bifida, like a girl that I had met in grade 1. I had met that girl while we were both in the hospital waiting for surgery. She was older than me. Her mother worked at a publishing house so we read a lot of books the night before our operations. She showed me her back. It looked raw because it was so full of scars. By then she had had over 20 surgeries, and her back was a huge bulging mass. So, I thought that maybe Mrs. Honeybun had the same disease.

After changing into a robe I would sit in the waiting room with all of the other kids and parents until it was time to see the Orthopedic Specialist. While all of the kids and parents sat waiting to be called for their appointment, we would stare up at the t.v., which was bolted high up on the wall so that everyone had to crane their necks to see it. There didn't seem to be cable so the channels were few and fuzzy.

Walking in to the examination theatre for the first time I had no idea what to expect or why I was there. Maybe my Dad didn't either. Besides, I had been probed and prodded by specialist since I was born, so I never thought to ask why I had another doctor's appointment. It was just the way that life was.

The exam room had a curved wall at the back, the walls perpendicular were angled out. To my horror a group of medical students came from a hallway that curved around all of the rooms, pulled back the curtain and without asking it it was alright with me to have a large group of med. students observe (stare) me throughout my exam.

My doctor would begin to provide a brief medical history about my congenital defect, my inability to run or walk up stairs without using my arms to pull myself up holding onto a railing, how I had had a cleft pallet repair in grade 1, that I had had muscle biopsies, the first one when I was two years old and the next one when I was five or six. He would go on to say that the biopsies and the ECG's were suggestive of a form of Spinal Muscular Atrophy.(back then there wasn't genetic testing like there is now).

Next would come the dog and pony show where I had to do strength tests for each doctor. I was told to squeeze their fingers as hard as I could, to push their hands away, to pull their hands to me, to sit on the floor and try to get back up. Then they would discuss what number my strength (or weakness) level for each area of my body was. They they would also test my reflexes. I had watched enough Flintstones episodes to know that Fred always kicked his leg up when the doctor hit his knee. So when the doctors did the same to me I would kick my leg up too. In reality my body didn't respond. I had no reflexes. I did however have physical sensations when the doctor would run the metal end of the reflex hammer (?) up my foot.

During medical exams at almost any type of appointment I would also have to get off of the examination table and walk across the room, back and forth, back and forth while the doctors would talk to each other about my waddling gate, and the tightness of my achilles tendons that made me walk on my tip-toes. I would have to bend over too. The doctors would look at my back, run their fingers down my spine.

During that first appointment I had x-rays taken of my back. I remember that there was a sign in the radiology waiting room that said that I should tell the doctor if I was pregnant or thought that I might be pregnant. As an anxious adolescent that sign caused me to become even more anxious. What if I was pregnant from a toilet seat?! Yes, the likelihood was slim, but still, what if?

At some point during that first afternoon at the Shriner's Scoliosis Clinic I was taken to a gymnasium size room where one wall had leaves painted on it. I was allowed to choose a leaf to have my name put on. I understood that it was meant to be something that I should be excited about, but I just wanted to get away from the whole place.

I had a follow up appointment a few weeks later. This time my mom left work to meet me at the Shriners, my social worker (provided by the Society for Manitobans with Disabilities) had picked me up from school to take me there and to provide support for me and my mom. My Dad either didn't understand, forgot, or thought that I understood and would tell my mom that on that day I was going to be fitted for a back brace. My mom and I went into that appointment without a clue.

Stripped of all but my panties, I was told to put on a body sock- a stretchy tube that would stretch over my torso. The sock was like the leg (minus the foot) from a pair of pantyhose, and only slightly less shear. I was told to lay on a table and that I was going to have warm strips of plaster put on me, and that it wouldn't hurt. The two technicians moved my back into as much of a straight position as possible. As one held me in that position the other man laid the warm wet strips of plaster on me, from my arm pits to my pelvis. After the front was dry the mold was removed and I would be rolled over so that a cast of my back was also made. I don't remember whether I cried but I assume that I did. I was embarrassed and ashamed and angry over my lack of control. I was a child in the early stages of puberty and I had no choice about having my body exposed or touched. My response to my shame was incredible rage and tears.

As the years of attending the scoliosis clinic continued my behavior didn't change. When my Dad took me for my appointments he would drive me home and ask why I behaved the way that I did at every appointment. I didn't know how to answer him. To me it was obvious that being the only person in the room in their underwear, surrounded by strangers, spoken about as though I wasn't there, and each time being hyper-aware that I wasn't like everyone else, that I was so far from normal that I felt cheated. I felt cheated to be encumbered by a thick plastic brace that covered my whole torso. I felt cheated that I had to miss school to go to these (and other appointments).

When I began to wear my brace my clothing didn't fit anymore. I had to wear an undershirt under the brace so that my skin could breath. I wanted to hide my brace and the straps of my undershirt so I wanted to wear shirts that hid everything. The waist of my pants had to be adjustable to fit over the two hip bumps in the front that accommodated me to be able to sit down. Shopping for clothing was a nightmare. I was very small for my age, and I refused to wear clothing that was childish.

In grade seven I discovered to my horror that if I slouched the top of my brace stayed upright, stretching the back of my shirt out. While sitting on a bench in the school cafeteria the plastic panels of my brace that covered my bum would get caught on the cafeteria benches if I sat far enough back for them to hang down. I was constantly mortified, and quickly began to think about how I was sitting, to make sure my brace wasn't as noticeable.

The rights of passage when girls begin to wear bra's was delayed for me. My brace was hard and kept everything confined. In the summer I would still have to wear an undershirt, and the thick brace and then a shirt over top. There were two summers where we had heat-waves. I ended up with a heat rash each time.I was supposed to wear my brace 23 hours a day. I just remember undoing the velcro straps on both sides of the brace and the immediate sense of relief from the constraints, but also the itchiness that was even worse when my skin was finally exposed to fresh air. I scratched so hard and for so long that for years that area of my stomach had less pigmentation than the rest of my skin.

One of those summers my mom was home because she had been laid off. We had no air conditioning to keep the house cool and one week it became so hot that we decided together to spend our milk money for the week on two movies instead. The Park Theatre was in walking distance from our house. We were elated at our decision to cool off in the dark theatre. We chose movies over milk and that memory is still a good one for us.

As the years passed I wore my brace less and less. No one could make me wear it. I was the last one to leave the house everyday and the first one home (from school). It was my fault (although looking back now I realize that it wasn't anyone's fault) for not wearing it. It was hot, it was cumbersome, it was hard to get enough air in my lungs to play the flute in my band class. Eventually, it also became more difficult to walk when I wore my brace and that was the last straw for me. When I was 16 years old the doctors x-rayed my growth plate spaces in my wrists and decided that I was nearly finished growing and I no longer had to wear my brace.

For the next two decades I would dream that I couldn't find my brace and that I wanted to put it back on...

The one positive that happened when I began to wear a brace was that my back stopped hurting.

Now I am a forty-one year old woman with two children. I hunched down to breastfeed both of my children for the first year of their lives. My arms weren't strong enough to hold them up for long, so I began to lean over. As I entered my mid-thirties I also began to spend a lot of time painting. Sometimes I stood to paint, but no matter how I painted I was always hunched over to work on the details.

Finally, almost three years ago I began to have muscle spasms in my back, neck, jaw and shoulders. It was always worse when I bent my neck down or to the side, or when I scrubbed something while cleaning the house. Over the past year the spasms have grown into daily presence. My muscles are trying to hold my body together, adjusting to the curves of my spine and the distortion of my ribs and the fact that to hold me head straight my neck is pushing against the direction of the rest of my spine to stay vertical.

Do I wish that I had worn my brace for 23 hours a day like I was supposed to? Absolutely. Would I have done it any differently knowing what I know now. Probably not.

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