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What I Can Control as a Person With Scoliosis

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Alethea and her dog enjoying the outdoors.

Alethea and her dog enjoying the outdoors.

I was 11 years old, and my school did a scoliosis screening. I was singled out as possibly having one leg longer than the other, and referred to the scoliosis clinic. We were entirely unfazed as my sister and mother both have mild curves, and we assumed I would get a lift in my shoe like my sister and go about my business.

The visit was scheduled for the better part of an afternoon in order to facilitate X-rays and a reading as well as a visit with the surgeon.

I had been goofing around in the room, bored and tired of the rigmarole, but then when the doctor entered our room he was grim and serious. The whole atmosphere changed and I intuitively sat still to listen, not really grasping what he was saying. He wrapped up his speech in which he broke the news that I would need a brace, and asked me if I hated him. I had only half listened after his first few lines, and the only reference I had for a brace was an ankle brace, so I just smiled and shook my head.

We made some more appointments and left the office. My mom was as grim as the doctor had been, which worried me.

The next appointment was to get fitted for the brace. I don’t remember it clearly, but they made a cast of my body and measured me all over. It was awkward and embarrassing to have strangers handling my pubescent body in such intimate fashion, and I figured now I knew why that doctor made it all sound so serious. That day was no fun at all. We spent prolonged periods awaiting more X-rays and different hoops to jump through. I was frazzled to the point of tears when my mom told me, “When you’re at the hospital you need to have patience.” And we giggled away some of the tension at her unintended pun.

A couple of weeks later we returned again for the fitting of the actual brace, and suddenly everything was clear. The Boston style brace I was squeezed into was miserable. Stiff and heavy with none of the contemporary lightweight materials, cutouts or styling, I felt like I was suffocating with the hard material wrapped around my whole rib cage. Then I was sent up to a room, and introduced to a nurse who was the epitome of the old battle ax. Just when I thought it couldn’t get worse, visiting hours ended, and in early 80’s fashion, my mom was told to leave.

Thankfully much has improved since then.

My own daughter was diagnosed with scoliosis when she was 14, and it was only then that I realized how traumatic the experience had been. Her scoliosis is a lesser degree than mine, so she doesn’t require bracing, but upon seeing her X-rays I nearly vomited.

I worried that she, too, would have to go through bracing, and I knew that the fitting process was only the beginning. I couldn’t bear to imagine her peers knocking on her brace as mine did, and her having to respond with the expected laugh, all while feeling as hollow as the knock sounded.

I’m aware that I got off easy; at least I didn’t require surgery, which many people do.

I still live with the challenge of scoliosis. I start physical therapy again this week; I’ve lost track of how many times I’ve gone. When I graduated from the scoliosis clinic I was assured that my scoliosis was a closed chapter and it would plague me no more, but 21 years later, I live with chronic pain, and several bulging discs that I try to keep in line enough not to require surgery.

But I don’t let it stop me. Someday maybe it will, but until I am physically incapacitated, I will keep moving. My philosophy is that I would hurt whether on the couch or out running trails or hoeing my garden, so for as long as possible I choose the latter, which actually eases the pain and helps me cope.

I don’t talk about it much; even my husband can only estimate my discomfort by how often I ask him to crack my back, which usually doesn’t work anyway because the muscles are locked up.

I am convinced that out of all of this, the only thing I can control is my attitude. So I focus almost entirely on that; it’s remarkable how much it helps.

Originally published: July 19, 2016
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