Eleven years ago, I was ‘officially’ diagnosed with an autoimmune disease that had probably started its insidious attack years prior. Dermatomyofuckingsitis. It started with little things, symptoms that doctors couldn’t quite peg. Never feeling ‘well’. Fatigue. Stumbling and uncoordinated, as if I had just downed a few pints – but without the buzz.
The coughing and shortness of breath. That’s how it really came to light. Pneumonia! Hurrah! Ten days of antibiotics and all would be normal again. Except that it wasn’t. And suddenly things spiraled out of control. Can’t sit, can’t stand, can’t walk – legs are disobedient.
Some pills make you larger and some pills make you small….
Strapped down and high on Ativan, I watched as the surgeon sliced open my bicep and took a piece of muscle tissue out of my arm. Like in a movie , through a lens smeared with Vasoline – hazy and foggy and thoroughly surreal.
Reading the report as if it were someone else’s, googling the terms and wishing it were. Denial. Nothing would ever be the same again. It could be worse, of course. It can always be worse. So you plough through it all and make the best of things.
Fast forward eleven years. Where has all this time gone? Every breath is both a gift and a constant reminder that you are limited. But you’re still here. Lucky to be alive, but mourning what you didn’t know you could have had before you realized you lost it. Acceptance. The infinitesimal beauty in the most mundane of things. Knowledge that life is fragile and time is limited. That death is nothing to fear. Gratitude for the most taken for granted of things: the sight of your eyelashes as you open your eyes every morning of your life….
Here’s to your health…