Writing about any condition you do not have personal experience with can be difficult, but of course, writing about unfamiliar experiences is also an integral part of fiction. I have scoliosis—curvature of the spine—and portrayals in fiction often lack realism.
Why is there so little reflection on the factors that affect a person’s journey? The challenges faced by a person with scoliosis are not only related to the degree of their curvature. Scoliosis is often noticed around the onset of puberty, a time when young people are already experiencing a great deal of change in their lives. It is often idiopathic (without a known cause), leaving patients and their families searching for answers they may never gain. Traditional methods of intervention are very limited: either the use of a brace or spinal surgery. The suitability of other methods is more debatable.
Even the country someone lives in can have a massive influence on their experience of scoliosis. In the U.S., health insurance considerations may play a part in the treatment received (which could be used as a source of tension within novels featuring characters with scoliosis). Without delving into the issue of healthcare politics, it is useful to note that in Ireland, for example, waiting lists for scoliosis surgery can be incredibly long. This can lead to significant anguish for those affected and their families.
I was both “lucky” and “unlucky” in my experience of scoliosis, if you can see luck in such things. I was unlucky in that I needed surgery, but lucky in the speed with which I was treated, and to live in England where spinal fusion surgery is provided by the state as part of the National Health Service. Because of how rapidly my curvature progressed, I was operated on just months after finding out I had the condition at all, when I was eleven.
Although it’s not the greatest concern when writing about scoliosis, the length of time a character has to wait for surgery will be important to their journey. For me, this time was not long enough to come to terms with the way my life was going to change.
My first surgery appointment was cancelled because I developed a fever. When a space for surgery opened up, I was brought in with little warning. I had been treating the time before my operation as a countdown and the snatching away of those days felt like theft at the time. The emotional challenges that kind of unexpected change can bring—especially for kids—will be something most MG and YA readers can firmly identify with.
At over eighty degrees, my curvature was too severe for a brace to be an effective treatment plan. By the time I underwent surgery, my lungs were being affected and I was struggling to breathe. Now, unable to remember that part, I simply know that for a while I really suffered. And then it was over, and life carried on. Although I have had issues since, largely as a result of the curvature above the correction (proximal junctional kyphosis), the quick response meant a greater ability to correct my curve. While my scoliosis still greatly affects my day-to-day life, it does so differently than it might have without the surgery.
Although surgery might help to combat the physical problems of the spinal curvature, scoliosis can also lead to other problems. The psychological implications of the condition are something it is important to consider.
While potentially harmful language such as “hunchback” may have been used in Victor Hugo’s famous novel, in kid lit it may be best to limit its use. As a child, I heard that word frequently, and it was incredibly hurtful. It made me angry that people could be reduced to one facet of themselves and to be seen as lesser simply because their spine had grown crooked. Children can treat aspects of life they don’t understand harshly, and this ignorance can be biting, as I discovered when I found caricatures of myself drawn by a fellow pupil at school. It took a long time for me to grow more confident and to move past the effect that living with scoliosis had.
In high school, I experienced a different kind of difficulty. By this point in my school career, I was with students who had no idea about my back or how painful it could be. I sometimes felt awkward and out of place among people who assumed I was healthy because my curve had been corrected so well. When a disability is invisible, people view it differently. Friends did not quite grasp how much of a pain the small things could be.
One recurring issue that is still a problem today is that one of the screws from my surgery can stick out, so I feel it jutting out beneath the skin. Once, someone recoiled, incredibly squeamish, and I wished I could have done the same. Not an option for me and for the thousands like me.
Nor is hiding from the changing room mirrors. As my spine was fused before I underwent puberty, I never got to fully experience my big growth spurt. Stuck at five foot two, my torso is the length of an eleven-year-old’s. My back juts outwards, making finding a pair of jeans that don’t gape at the back almost impossible. Tight fabric T-shirts are a no-go as they make my rib hump visible. When the danger is gone, it is the little things that are the most upsetting.
One last thing: often, portrayals of teenagers dealing with scoliosis show them as superhuman. Brave. Fierce. Please don’t do that. It isn’t true to life. After all, we are just people too, good or bad or neither. We are all trying to live with the hand we have been given, and to stand tall despite what might hold us back.