The first thing I learned from chronic pain is that hope is dangerous.
It took the first couple of years of regular punishment and debilitating pain to realise that if I allowed myself to hope, I would convince myself I could pretend to be normal. And if I did something normal… ate something normal, walked too far, studied too long, things would get worse.
Most of the time my body would notice my mental health falter long before I noticed it consciously. My chronic illness itself was actively and immediately affected by it. So I was confounded by the sensation that my bones were like crumbling chalk, my nerves were frayed wires in the back of my neck, I was nauseous, the pain was a tide that never went out, everything was heavy, and I was at once so jaggedly alert and so deeply tired.
Seven years in, while still exhausted and miserable, I had become more disciplined and capable of managing the physical symptoms. I began learning ballroom dance. But I was more depressed than I’d ever been and I’d lost access to the joy of which I was once capable. For a while the only time I felt happiness was during a dance practice. And I was starved for it. It felt like all the feeling I couldn’t muster anywhere else burst out of my heart as if it had never been lost. I clung to the joy.
Whenever I felt like pressing my forehead against a wall hard enough to break my skull open, whenever I kept scratching my inner elbow until it made marks that didn’t go away, whenever I wanted to yell and pull at my hair, instead of doing those things, I went alone to the back room and danced. I had hope. I was so hopeful.
So of course, it was time for a punishment: I got an overuse injury in my feet. I had found a crutch, and I was not allowed to lean on anything. Dance had made me feel less alone, and I had to be alone. All of those dreams I had of maybe teaching dance one day, maybe being more like a normal person one day without needing to constantly think about managing an illness and keeping the pain a secret – everything I hoped for could not be my purpose. Pain was my job.
In retrospect, I realise now that I was dancing every time I felt panicked. When I went into fight or flight, among other things, it meant I had less blood flow to extremities and my muscles tensed up. I certainly couldn’t dance freely anymore. And I lamented that I was just starting to see a way out. I realised, there was no way out. If I started to get on top of my illness, there would be an injury. If I dealt with that, it would be something else. There was no way out. This was my life.
I started pole dance and one day I thought, thank goodness I’ve never had a pole injury… This is the only place I can be free. That very day, in that very class, I got a back injury. It was not the only time I would think about how much I feared an injury or pain increasing, and find it would almost immediately happen. One day, standing in the shower, thinking how well my feet had been doing, swallowing the deep fear that always followed feelings of hope for me now, and it suddenly felt like someone had driven a nail into my heel. I became afraid to think.
More to the point, I was informed one day that I had developed kinesiophobia: fear of movement. In my specific case, I was afraid to be standing or on my feet, mainly, but also afraid of any movement in case of injury. I would act very normal around other people. But yeah, you know… also panicked constantly. Things could only ever get worse, and how could I bear another day of this? Another year? A lifetime?
Truth be told… I have now had that back injury for a year. I’ve had my foot injuries for nearly three years. I’ve had my chronic illness for nine years. I’ve had anxiety and depression all my life. They all prevent me from doing different things. My philosophy has been, None of it will ever get better, but you will get better at dealing with it.
But there was this moment when I started seeing an exercise physiologist a year or so ago, and my back got slightly better. I was able to do a pole move I had assumed I’d never do again. For the first time, it seemed… I’d returned. Not even all the way. But it got fucking better. It hurt less. And now I think, WHY? Why the fuck can’t any of the rest of it get any better? IT CAN. IT CAN GET BETTER. ALL OF IT. It’s not just about me working harder or getting better at suffering. How dare I think that life should exclusively wall me out?
Hope is not a danger to me anymore. It’s a necessity. I must acknowledge when I’m anxious or sad. But in the every day, if I focus on the pain, I know, it will perpetually recycle back into more pain. I can’t be afraid of myself. So while I was once reckless with hope, and the joy switched on like a floodlight into the deepest black… Now I let hope softly, carefully in. I let it ease into my bones, let it fill my limbs as I dance.
And joy has softly followed.
“Softly” was submitted to mindshare as part of The Turnings Project in 2020. To learn more about the Turnings project click here.