Embracing Scoliosis

I remember the very first day, when it sat, stiff, hard plastic on the couch. I felt no fear, or anger. Just curiosity and anticipation. The small, round thing was going to help me, and all I had to do was wear it. A lot.

I wear a back brace. The angle of my curve is 28 degrees, considered “moderate”. I’m not about to die from my spine pushing into my lungs, but if it had been left unattended I may have had lasting back pain or needed pretty serious surgery. The brace won’t fix my curve, but it’s preventing it from getting worse. And sometimes, I need to take it off.

Woah, what is that?

It’s a back brace.

For what???

I have scoliosis- my spine is curvy.

How long do you have to wear it?

Until I stop growing.

And per day?

Around 23 hours.

Ponders this for some seconds – this is my favourite bit-

Do you sleep in it?

Most people who wear a brace start wearing it when they are around twelve, but I was fourteen. As a result, the decorative pattern options for it were: skulls, planets, ladybirds, toys, rainbow butterflies, or red. (Just red.) I went for rainbow butterflies. I haven’t stopped growing yet – I’m still wearing it and I’m seventeen. So my brain age is nineteen, my bone age is fourteen and my tolerance-of-rainbow-butterflies age is about eight. And no, it’s not bulletproof. I asked.

There have been a few difficulties with my brace. My clothing choices are limited due to its shape- singlets and dresses with spaghetti straps are a challenge, jeans or any pants apart from trackies are uncomfortable. Pain in the form of digging into my hips and weakened muscles is frustrating from time to time, but is not overwhelming. I’m also physically restricted when I eat and my circulation can get cut off – on planes or when I’m sleeping, and sometimes when I’m just sitting for a long time.

However, it hasn’t all been bad. Colour schemes and journalling have become a daily activity as a result of needing to chart my hours. I currently have 18 pages of scoliosis charting on my door, which I regularly look at for inspiration and memories. I write a few words and add a little sketch below days when something special has happened: musicals, bike-rides, debates, camps. It has also given me a fantastic party trick. Convincing people to punch my ‘Abs of steel’ has provided sufficient evidence for many that I am Wonder Woman; the look of surprise and mild disbelief delight me, and those who are in on the joke, every time.

I’ve met a few other people who wear a brace, and some of them find it hard. Hiding it from friends, taking it off and on discreetly in the bathroom – self-consciousness is often linked to other insecurities, but having a corset-like structure on all the time can make such challenges seem amplified. It’s really interesting that different people can have such drastically different views of the impact of their brace on their lives. My positive view of my brace was recently shaken when I read a sobering article by Leah LaRocco, a writer for HuffPost who had fairly similar treatment for scoliosis to me when she was 14. She had to overcome similar obstacles, describing her experience as follows:

‘It was impossible to feel pretty or cool when I was wearing that brace. I felt hollow and insecure. It’s horrifying to me that girls today still have to fasten the same Velcro straps I did twenty years ago.’

I feel sorry for someone in a position so completely different from my own. It’s strange and upsetting to think that a brace could be the cause of such pain and sorrow when, for me, it is symbolic of strength and support. Perhaps our different reactions reflect exposure to different cultural representations of confining treatment. Perhaps LaRocco, who sees her brace as a ‘modern day straight jacket for teenage girls’ felt labelled by her treatment rather than accepted regardless of it, a problem that occurs so often in our society.

Most people get a shock when they first see my brace, followed by a sudden realisation that I’ve been wearing it during an entire conversation, day, year, without them knowing. What surprises me is the fairly quick acceptance, something that people with treatments that are more difficult to hide can sometimes struggle with. My brace and my scoliosis, being fairly small hindrances on my activities, fashion and identity, is not seen with the same stigmas that surround other abnormalities such as a lazy eye, or slurred speech, or a wheelchair. Maybe it’s the rainbow butterflies. Maybe it’s that I don’t make a big deal out of it. Maybe it’s that my specific condition can easily be hidden under a jumper.

I can understand feeling self-conscious, hating being confined, particularly during summer, and hating being confined for so long. I feel very lucky that my attitude has been different from this. I didn’t choose to be accepting of my brace, I just am. So when my parents say “Noa, I’m so proud of you”, when my cousin says “Wow, I couldn’t do that. I would cry every day!”, when my friend says “I feel so bad for you. That must be so hard”, I just smile, and realise how lucky I am to have a caring and supportive community and to have a mindset that is not self-pitying and defeatist, but instead helps me take on challenges and overcome them.

I wrote the beginnings of this piece at a national Philosothon in November last year. I remember writing it, I remember the whole weekend; but I don’t remember whether I was wearing my brace at the time. It’s become a part of my everyday norm, much like putting on shoes and socks: sometimes uncomfortable, but remembered only fleetingly. At some point in the middle of the day I might think, ‘hey, that digs in a bit’. But it’s not unbearable. Only after a big meal or a hot day do I start to get impatient for the end of my brace wearing days.

I recently had my yearly checkup with my surgeon, who said I have been very compliant and that the results reflect that. The angle of my spinal curve has remained around 28 degrees, but it has not gotten worse. Luck in the form of a perfectly timed diagnosis, a strong support network of family and friends, and my personality, which happens to include acceptance of wearing a brace 23 hours a day for an unknown amount of time, varying from 18 months to three and a half years, has helped a lot with my success.

But something changed at that appointment. Everything changed in a single statement, as flippant as a comment about the weather. The surgeon said I could stop wearing it. It’s not immediate, but it felt immediate. For three months I am to wear it 12 hours a day, for the following three months only 6, and then not at all. My dad pointed out later that most people would be overwhelmed with happiness by this news. They’d go have a party. Not me.

It’s taken me some weeks to come to terms with the change. Confused friends, family, teachers, have asked, hesitantly, ‘But isn’t that good?’ I’ve had to think about it carefully, slowly and logically, before replying, ‘Yes, I guess, it is.’ But what it feels like is a piece of me being taken away. Not the physical brace, but the feeling of being protected 24/7. It’s like the safety net, the thing preventing my spine from curving, is being taken away. And it hurts. My muscles haven’t had to hold me up for twelve straight hours every day, for three years. Most kids celebrate this time when they can finally stop wearing a confining, ugly source of unwanted conversation. I feel like my lifestyle is being torn apart. Sylvia Plath personified her plaster cast, I don’t feel the need to do that, but at the same time, I am preemptively sad about losing it. It’s been a part of me for a long time. It will be strange to lose my brace.

Yes, my brace hurts sometimes, and now the journey is a bit scary. But it has done its job, protecting me from further pain and surgery. I am very fortunate to have had such a great success and such supportive friends and family to help me along the way. I think of the future where my brace no longer holds relevance, no longer has precedence over my thoughts, and it’s strange. It surprises me that I am preemptively nostalgic, preemptively scared of having to hold myself up with no support. But of course, the support I long for will always be there, through the strength I am starting to regain, through the strength that my community gives me. It continues to upset me that other teenagers in similar situations can find it so hard to comply and accept the treatment as good rather than as cruel and unnecessary punishment. But hopefully as acceptance continues to grow within our society, of all people, regardless of their differences, teens with scoliosis will find it easier to see the positives in their treatment. I will miss my abs of steel, but will move on with the knowledge that I don’t need them anymore. I am strong as I am.