I was seven years old when I was diagnosed with scoliosis, a medical condition where one’s spine is curved, possibly in several places and in several dimensions. Scoliosis is often treated surgically or with a straightening brace, or, in less severe cases, with physiotherapy. Or all of the above. The second option applied to me. I spent the next nine years wearing a plastic straightening brace around my core, for the first four years, 22 hours a day. My life changed in many ways after the diagnosis, and I imagine the same applied to my concerned parents too, especially my mom. On the outside, however, the difference between then and now was barely noticeable. The curve on my spine was only just developing, and the aim of the brace was to keep it from ever becoming critical.
The invisibility made it difficult for me to talk about my scoliosis or the brace. Even if I could explain what scoliosis was, I had few words to describe what I felt. I wasn’t sure how I was supposed and what I was allowed to feel. Scoliosis didn’t feel like an illness, because I didn’t really feel it — but the brace did hurt sometimes. Still, it was the biggest mental challenge I have ever encountered. A decade wearing a brace felt inconceivable because it was longer than I had even lived. As I grew older, I became increasingly aware of how the brace widened my core and made me look, in my eyes, fat and clumsy. On top of everything, I was still anxious that the brace might fail in its mission, and that years of effort would have been for nothing.
It wasn’t always easy to motivate myself to put the brace on every day. What made things worse was that I didn’t know anyone who was in the same situation as me. There was no information available online in the Finnish language about scoliosis, let alone any network for connecting with other patients or tips for dealing with daily mundane problems such as protecting clothes from being damaged by the brace. So, my strategy was to keep quiet and try to think about scoliosis or anything related to it as little as possible. Eventually, I made it through the treatment with a straightened spine, but I can’t say it wasn’t lonely.
It was only after my scoliosis treatment was already over that I even realized how alone I had been. My mom, who was there for and with me at all times throughout my brace years, had worked it out a bit earlier. Her experience of loneliness had been a different one, that of a concerned parent trying her best to support her child and navigate the sometimes mechanical health care system that easily makes one feel lost or frustrated. For her, too, it would have been reassuring to have access to views and stories of other families that had been through the treatment. She came up with the idea of writing our experiences down together to offer future patients and their families the peer support we never had. In 2014, we self-published a book in Finnish about my scoliosis treatment years.
It’s been seven years since the book was published, and eight since I stopped wearing a brace. Between then and now, the book has received messages from Finnish scoliosis families who had found support for their ups and downs in learning about ours. It has been heart-warming to see that the book has really served its purpose. And it has also shown that there is a clear demand for such stories.
At the same time, as the years have gone by, I have grown older and started to live the life of a young adult. New projects and the passage of time have made my brace years ever more distant. Still, my scoliosis, although sometimes less visible and in a different way than before, continues to be a part of me. With distance and perspective, I have started to see more nuance in my scoliosis treatmentMy mom, on her part, shared the same feeling. For these reasons, we agreed that it is a good time to update and translate the book.