It was my piano and ballet teacher that first noticed that my posture was compromised. I was eleven years old and since I couldn't see my own spine in the mirror, I didn't understand the fuss. I do however remember the constant corrections to stand straight and my mom starting me on a regimen of walking with books on my head every night. My piano teacher who had taught me since I was five became deeply concerned as my right shoulder blade started to jut out even more noticeably and a bulge above my left hip became discernible even through clothes. My mom made an immediate appointment with my doctor who was a pediatric specialist. With great clarity, I remember when my kind doctor immediately dismissed my mom's great concerns with a sigh "Oh, these teenagers always slouch," Although relieved, I immediately stood up for myself saying that I was only 12 and was indeed trying to stand straight. He gave me a small smack on my bum and shook his head saying "No need," when my mom continued to advocate the need for me to have a back x-ray. This man was a respected doctor so we left feeling we could stop worrying about my spine.I would be lying if I didn't say I held some resentment to this doctor who had known me for four years and never had me turn around to simply run his fingers down my spine. People rarely questioned doctors during those days and it was obvious that he didn't feel my teacher's or family's concerns were of any merit. But thankfully, my incredible teacher who looked at me every single week sitting on a piano bench would not relent and insisted that my mom take me to see a back specialist. The wait time, without any urgent requisition, for my specialist was probably only four months but, in that time, my spine in a rapid growth spurt worsened by the day.
I immediately liked my specialist Dr. Stephen Treadwell, a very tall kind doctor, who would be the one who finally confirmed that indeed I had been trying to stand straight but simply could not. My spine had two pronounced curves of 60% and 65% respectively that were twisting and pushing into my lungs and towards my heart. Sadly, my case of scoliosis was too advanced to consider wearing a back brace and would instead need immediate surgery. The doctor talked to my mom separately and I remember how, upon return, I searched my mom's face for answers but she wouldn't look at me. I now realize that it was in this particular moment that a light faded from her eyes comprehending this would be a bullet she couldn't take for her daughter no matter how willing. Every parent who has ever had to hold the hand of their suffering child fully understands this sentiment.
I have to admit that part of my naive 12 year-old self was somewhat excited at the thought of visiting the hospital and having an operation- it seemed like a rather interesting adventure. However, my mom understood the medical details of what lie ahead for me and could barely make it to our car before collapsing in sobs. I remember thinking I ought to be crying as well and tried awkwardly to comfort her, not fully comprehending. Doctors shared little of the momentous ordeal in front of me not- I suppose they did not wish to burden a child.
It is difficult to believe that now, almost 40 years later, the surgery to treat scoliosis, although vastly improved from medical advancements, still involves fusion of the spine. This means that the fused part of the spine will never again move the way it was intended. For me, it was an extensive spinal fusion- the entire spine except for spinal disks L4, L5 and S1. So, after the surgery, at age twelve, these three little disks have given everything for me to experience some years of normalcy before they simply wore out, I admire how much they fought to move for me every single day and truthfully did not fully appreciate them until they were gone. I am not a candidate for disk replacement (at least, not yet) because it doesn't work with fused spines sadly.
People often ask me what causes my chronic pain and I will attempt to tell you without medical lingo (as I am not a doctor, obviously) but have a pretty good understanding of my back so here goes....So, when your disks are permanently distressed and pressing on your nerves, your muscles (etc.) above your fusion have pulled in one direction and the muscles (etc). have pulled in the opposite way below your fusion, and on top of all that, your spine hasn't functioned or moved in the way it was designed for years, well, perhaps you now understand.
Before I go any further, it is important to note that many schools have now implemented a simple diagnostic test to detect scoliosis. The school nurse asks the student to turn around, bend forward and simply runs her finger down the spine. It is surprisingly obvious to the physical eye when there is any any deviance from the straight line or a protruded shoulder blade. Catching scoliosis early is a huge advantage as other treatments besides surgery (fusing the spine) can be explored.
I didn't realize for years that the Disney classic "The Hunchback of Notre Dame" was a man crippled by a form of scoliosis....I thought he was portrayed as a kind of monster with his obvious deformity making others uneasy in his presence. When I made the connection watching this film with my children years later, tears sprang to my eyes making it difficult for me to see. I was this monster, I remember feeling hatred towards my body, ashamed of my scars.
