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My scoliosis story part 1: The diagnosis

SCOLIOLISTIK is rooted in my own personal journey with scoliosis.

A journey that I want to share with you... But the journey has not ended yet! (and I'm thankful for that ;)) so let me start with sharing the first part of my scoliosis-story:

I was diagnosed when I was 10. At that time I was living in Paris. I don't remember much from the day or the way the diagnosis was set. But I do remember the years before that. Hating taking viola lessons because my back hurt and I could feel my body sinking under the weight of the instrument. Being exhausted from any physical activity, especially those involving walking, and being teased by my family for complaining and being lazy. I remember falling often, as if I had no control over my legs and feet. Falling on my sacrum, twisting my ankles, bumping my knees into tables and chairs, even falling on my face.

I've heard many stories of what brought my parents to consult. But I don't remember any of it until that first consultation with an orthopaedic specialist when I was a little over 10. I have a picture in my head of me standing in my underwear in a room, watching the doctor and 2 nurses talking next to the big desk. I remember being cold and confused and vulnerable. Like I was at the mercy of the adults in the room...

Then I remember the doctor looking at my X-rays. He said I needed to wear a brace, a Milwaukee brace - one that goes all the way up to the neck. To be honest, I can't remember how I felt at that moment. Back in the waiting room, while I as waiting for my mum to finish talking to the secretary, a nurse was trying to reassure me about the brace... to be honest I'm not sure I was even realizing what that brace meant exactly.

This was the first of a long series of appointments. My parents were looking for second opinions. We saw what felt like hundreds of orthopaedic specialists, all recommending different types of braces, one of them even recommended wearing a cast for 6 months and surgery after that.

At the same time I started seeing "alternative" therapists: Mézières phyisiotherapy, Alexander technique, different kinds of ostheopathy approaches, even shiatsu and acupuncture.

It was tiring... to say the least... on top of that, i felt like I was caught in between two worlds: the world of the "specialists" with their pessimistic outlook on my scoliosis and their conservative treatments (not to mention their rather cold and authoritarian patient care) on one side, and on the other side, the world of these alternative therapists, who had a far more optimistic outlook, and also much more friendly with me as a young pre-teen.

I started wearing my first brace during the summer holidays, right before starting secondary school (11 years old). My scoliosis then was around 35 degrees (2 curves).

I remember the day I got the brace, the orthoprosthetist explaining how to get in the brace and close it with special screws (yes, there where screws and they were horribly difficult to put in place). The days that follow were all about getting used to the brace... I remember going for a walk around the block with my mum, and I don't think I even lasted 10 minutes before having to take the brace off...

The plan was to increase my wear time a little each day to get used to it before I started school 2 months later.

A few days later, it was time to join my brother and cousins at my grand parents place in the countryside. I remember arriving there with my brace in a big bag, and feeling excited about showing the brace to them, almost like a naive pride or something... I was the center of attention for sure, when I took the brace out of the bag and showed how I managed to put it on all by myself!

The summer holidays in the south of France are probably the worst time to start wearing a big plastic brace, but at the same time, being able to take it off to enjoy summer activities, swimming in the sea, sunbathing, playing tennis and biking with my cousins , eating my grandmother's amazing food, probably helped me to cope with the few hours a day and night I was wearing the brace.

My grandfather was a former general of the army and the most disciplined and systematic person I'd met. To help me find discipline to wear the brace he hand-made me a booklet with a calendar to write in the amount of time I wore the brace each day. I deeply admired my grandfather and I think it is probably more the fact that it came from him than the booklet itself that helped me actually use it.

I spent the second half of the summer holidays in Norway with my mother's family. I still couldn't wear the brace for the recommended amount of time (23 hours a day)... I already had a strong character and was quite stubborn, so it was not easy to "make me" wear it if I decided that I didn't want to... But I had my grandfather's calendar to help me on the way...

(... to be continued...)


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