None of my sons have scoliosis. I had it as a child, worse than any of my relatives with it, and still have it today. Mine is the progressive kind, and causes pain and height loss even now, some fifty years later. My childhood was affected in every way by this condition, and the lessons I learned may help others.
Because of the early onset, doctors were concerned about a rapid decline, resulting in my becoming crippled. So they were aggressive in their treatments. At the age of seven, I wore a lift on the heel of my left shoe. I did exercises, 100 repetitions per day in 1958, a time when working out was definitely not in vogue. At the proper time, and because previous measures had failed to stop the curve progressing, doctors prescribed a Milwaukee brace. That technology was new to the United States in 1964, and I was the second patient in the entire Chicago metropolitan area to receive one. So no one had seen a brace like this no matter where I went and frequently I was the object of stares.
Fear of the unknown does strange things to people. Sometimes strangers would cross the street to avoid coming too close to me. That hurt my feelings.
On the playground, again fear created some odd behaviors in my classmates. They would tease me daily about the odd shoes I wore. When they learned about the exercises I had to do, they teased me about that, too. Later, in high school, when the brace caused my boat-necked blouses to gap away from my body; my classmates would throw eraser bits and spit wads at me whenever they could get away with it. They quickly became very accurate.
All this unwelcome attention made me feel sad and unwanted. Especially when everyone groaned when I had to be on their team. I was so uncoordinated I was terrible at sports. All this rejection was very hard to accept.
In those days, no one gave any thought to a patient’s emotional needs. We were supposed to realize ‘all this’ was being done for our own best interest, and we were not to complain about anything.
But in reality, for the child with scoliosis who is forced to be different from their peers, who is compelled to endure burdensome and sometimes uncomfortable therapies, there is much to complain about. Parents and other adults can do a lot to alleviate the emotional pain the child feels.
Combating lack of knowledge and awareness at school by scheduling a time in the classroom to talk openly about scoliosis, what it is and what it is not, and the funny ways it is sometimes treated, can really help children understand and empathize with what their classmate is going through. As children realize they won’t catch this, and their classmate doesn’t want to be different in this way, they can reach out and perhaps stop teasing.
And life during scoliosis treatment can hold its marvelous moments. I learned to play the piano while wearing the brace. Because I could not see the keyboard, I wowed the audience, and the judge, at the annual competition recital I attended. To this day, I type without looking at the keys, and while I no longer play the piano, when I did, even after the brace, I hardly watched my hands. I could and can tell where I am on a keyboard by the way the keys feel. I can tell if my fingers are ‘off’ position.
I learned to count the steps in any staircase I had to negotiate frequently. Again, I could not see my feet, so I had to find another way to adapt so I would know where I was on that particular staircase. And today, when I saddle my horse, I pull the cinch tight with one knee resting against the horse’s side to give me added leverage. No one else tightens a cinch this way, but it works for me, the horse doesn’t mind it, and it gets the job done without overly straining my back.
Giving a scoliosis child confidence that this will end, that they can do many things although they may have to find an unusual way, and that they will, in the long run, be better off for overcoming difficulty and triumphing will be valuable lessons for their whole life. We, as concerned adults, can really help in this process.