The other day, I forgot that I was wearing my neck brace as I entered a meeting. I was immediately asked what happened and I fell into a knee jerk response that I wear it to protect my spine as I heal from surgery.
I told the truth, but it felt like a lie. I do wear the brace to minimize jostling as my spinal fusion sets, but I also wear it to support other parts of my spine that weren’t operated on, and that aren’t quite stable enough to hold their own.
As I thought later about what I could have said instead, what would have felt more honest, I struggled to come up with anything remotely concise. Before the surgery I would say that my head was floppy and the brace held it up. But now I have metal rods and plates and bone to do that.
And yet, I still sometimes need the brace. I still have Ehlers Danlos Syndrome – something that isn’t going away and that can effect every part of my body.
I could say that I have a chronic condition and need the extra support. But that doesn’t feel right either. That doesn’t acknowledge the unique experience of recovery. The success of the operation, the improvement of my symptoms, the swift turn my life has taken from a downwards spiral of dysfunction towards potential, hope, and choice.
There isn’t a word or a term for patients with chronic illness who conquer an aspect of their condition. Their lives might be dramatically different, but they are still faced with the same binary definitions – healthy or sick, able or disabled.
I don’t know how to categorize myself. I am much more able than I was before. The metal in my skull and spine are providing more support than my neck brace ever could, and are allowing me to appear more or less ‘normal’.
So maybe I can be normal? Maybe I can cross over into the more or less healthy category? The able category? After all, that’s how I appear. Unless I wear my neck brace, no one is going to offer me their seat on the bus.
Except I’m not cured. The surgery was a structural fix to a structural problem caused by an underlying faulty system. And that system hasn’t changed. It still gives me trouble, and will continue to do so.
It shouldn’t be such a big deal, this lack of language, but it feels very stifling. It feels as though I have to choose a category, even if it doesn’t quite fit, because everything has a label.
Race. Nationality. Gender. Sexuality. Ability.
We even separate between mental illness and physical illness – as if mental/emotional symptoms exist separately from physical symptoms.
Maybe, then, I shouldn’t work too hard to find an explanation. Maybe it’s a good thing that no neat label exists.
We have these perfect black and white categories, but the reality is that most of us are grey, fitting somewhere in the middle.
According to my quick google search, a disability is defined as ‘the consequence of an impairment that may be physical, cognitive, mental, sensory, emotional, developmental, or some combination of these’.
And yet, we don’t generally consider someone who sprained their ankle as disabled. We don’t often consider near-sightedness a disability. We don’t label someone with poor coordination as being disabled, or someone who experiences mood swings, or someone who is sensitive to loud noises or bright lights.
Most of us have some sort of quirk, something different about our bodies. Sometimes those things can impair us. Sometimes mildly and sometimes severely.
Ultimately, I’m a person with a body. A body that’s a bit screwed up.
And that’s about as concise as it’s going to get.