On Staying Human

For People with Disabilities, Self Care Has Nothing to do with Bubble Baths.

“Are you wearing a bra?”

I was laid back in my hospital bed, propped up slightly while the nurse flushed my IV. I cringed for a second — I could tell it was going bad. Then, I looked back up at her and nodded.

Work is original, Kathryn Poe

“I guess I just haven’t worn one for so long,” I paused. “I missed it. You do weird things when you’ve been in here for a while.” I cringed again — curled my toes. She was drawing my blood now. “The last time I was in here for this long, I made the mistake of just letting myself go. I can’t do that to myself again.”

I glanced to my right, into the gray December skies outside my window. I’d been watching the sky intently for days — just the little shifts in the colors. Everything was tinted bluer now; looked colder. I’ve been here for more than two weeks. I’m a twenty-year-old young woman, and I haven’t been outside for more than 30 seconds since the beginning of December. It was 60 degrees. The air wasn’t biting yet. Now, my siblings have already had their first snow day. The world feels like a time warp in the hospital, and if you don’t pay attention, you can lose yourself in it. Finding an anchor in that is an act of survival.

Once upon a time Virginia Woolf wisely said something about needing a room of ones owns to write fiction, but sometimes in life, you don’t get to chose the room. The room finds you. And you suddenly have all of this space — thinking requires actual physical space, you know — to do nothing but think about things. You find yourself wandering to all of the things you miss — all of the little things about the world outside that you crave — the thoughts you think when you’re laying alone at night or the things you ask people to bring.
You think you know what being human means; what you are and what you like, and then suddenly, you’re away from it all. Stuck in a room with yourself with an IV in your arm.

I’ve often found in these moments that the things I miss surprise me. I miss my jeans. I miss wearing bras — the soft, underwire ones. I miss standing in line for my cup of coffee in the morning. I miss flowers (I love flowers) in grocery stores. I miss standing in the shower. I miss walking down the street in my big, stupid black coat that’s way too long for my 5'2 frame.
Those are the things that I think about — my little sense of normalcy. It is the little things in life that provide us with our sense of humanity and identity despite what we might think. When everything else is gone — when our fancy titles and degrees and everything else doesn’t matter. Our humanity is found in our habits; the little things in which we discover calm.
So when you find yourself looking for your humanity, even in the hospital all alone with your thoughts, these are the things you’ll find yourself falling back on — the things you must invest in.

Self-care for the able-bodied world has become a movement of its own. I’m always reading articles online focused on self-care — all about bubble baths and painting your nails and memes of pretty women surrounded by expensive foods. There’s nothing wrong with that sometimes — after all, we all need a break on occasion to just take care of our minds and bodies. But it’s important to realize that for some people, self-care is serious — it’s literal mental and physical survival. For people with disabilities, self-care can be complicated. It’s not about taking a bath to enjoy the warm water and pretty, scented bubbles; it’s about taking a shower to feel human and be clean for the first time in a month. It also realizes that other times, showering is just too physically demanding. Just the act of getting ready the morning can be a chore that requires all of your energy for the day, and what might take an able-bodied person an hour might require several for someone who has a chronic illness or impaired mobility.

Self-care can mean lots of things to varying degrees. Sometimes its investing in small things that make you happy — like watercolor pens or a new journal, so that when you’re having a hard day, you have some sense of joy and belonging despite having a body that rarely fits in with the world around you. It can be the difference between staying mentally healthy and complete deterioration — holding it, nurturing it, maintaining it — and letting it fall away. Genuinely taking care of yourself during a crisis — finding real solace in the little things that you have — that’s the most human thing you can do.

Sometimes, that might be all you can do.