I woke up late today. A slow Sunday morning, dawning with hot yellow light through the blinds above me around 10:30 a.m. There wasn’t even a small moment in that transition into wakefulness when I forgot that I was in pain. I fell asleep with it, tossed and turned through it, brought it into my dreams, and awoke with it. But this morning I also woke up with something new: A rheumatoid arthritis nodule. A small one jutting out from one side of my middle knuckle on my right hand. I’ve known that I have RA, but seeing that slight deformity made it more real, more shocking.
Living with pain is difficult in ways that I can’t put into words. It’s a battle you aren’t armed for. It makes you feel weak physically, of course, but also emotionally. I am nervous to face a busy day when I am in the midst of a flare-up. What will people think if I suddenly start limping, or drop something from my weak hands? Will I have to cancel my lunch date, or will my friend understand the grimace I can’t seem to hide?
Pain makes you selfish. It makes you horde your minutes to yourself. It causes an obsession with finding your own balance, which often means inconvenience for others around you.
Pain makes you block out the moments that make life layered and tangible — the mundane occurrences like slicing tomatoes for dinner while you dream about traveling. Instead, you have to focus on the strength in your hands, the position of your body against the counter, how far you have to reach, the heaviness of the knife. In those moments, I don’t hear the sound of the juices released from the plump red tomato skin at the touch of the thin grey blade. I don’t hear the wind traveling from the open window in front of me and out the screen door at my back. I don’t smell the sharp and salty scents of the hot pan sautéing onions at my hip. All I can think is, just get through cooking dinner and you can sit down.
Today I struggle to step away from pain; to avoid its stifling definition of my extraordinary life. I want to find a way to weave it in, to allow it a place, but not give it everything I love.
This nodule represents something. Medically, it shows progression of a condition that is worsening from the inside out. But, to me, it represents a future without writing. Without lifting children onto my lap or swinging them through the air. A life of holding my Love’s hand without lacing our fingers, or having him open doors, no longer out of his own desire for chivalry, but because I need him to.
The only way I can think to fight the overwhelming fear and frustration at this future contained in that small nodule protruding from my aching hands, is to write. To write a path through the pain. To write a path through the certainties, finding and exploiting the uncertainties, cherishing the hand that I can hold in spite of pain. To write and make sense of something that confines me like a single, black-barred cell. To write and realize that I am not alone; others feel pain, others deal moment-by-moment with the same invisible illness. Others sit through lunch with a half-hidden grimace.
I write to remember that my life — that living — is not about my hands or how am I going to open jars, or even about waking up in pain. Life is about what you do with the pain.
And since pain is now a part of me, embedded deep in my body, I choose to live with it and get on with life.