As I write this, I’m in the middle of a flare-up. I’ve been stuck in bed all day, sleeping away half of it. I got a fever and became dehydrated and weak. My face is swelling. My mom, once again my nurse, brings me lunch, glass after glass of water and Gatorade, ginger ale, and ice packs. She helps me out of bed, stays by the door while I throw up. She walks me back to my bed to rest when I’m done.
While this is an example of how amazing my mom is, I can’t tell you how small it makes me feel. Flashes of hospital scenes from TV play in my head. I’m the pathetic patient, curling into myself as my mom holds my arm. I’m a child who can’t do anything for herself.
I just want to lay on the floor and have no one help me up.
This is an episode of my life with chronic illness. But it isn’t who I am. The real me? I’m a book worm — a voracious reader who reads one book per week on average. I’m a writer, constantly spinning stories in my head before putting them on paper. I’m ambitious. I work 34 hours a week at my day job, then come home and work on my freelance writing. I write essays, reviews, and fiction. I’m an assistant editor for a magazine. I love to work. I have big dreams. I like standing on my own two feet. I’m a fiercely independent woman.
Or at least I want to be.
Independence raises a lot of questions for me. In my head, independence is an able body that can do anything it wants 95 percent of the time. But that’s just it: It’s an able body, a “normal” body. My body is no longer normal, and it hasn’t been for 10 years. I can’t remember the last time I did something without thinking about consequences and then planning things out for a week after the event so I minimize damage.
But I do it over and over again to prove I’m independent. To keep up with my friends. Then I end up relying on my mom while she takes care of me.
Now that my body is not so able, does that mean I’m dependent? I’ll admit that I currently live with my parents, though I’m not ashamed to say that at 23 years old. But I work a day job that’s tolerant of my frequent absences and need to leave early for appointments, though it doesn’t pay that well. If I were to try to be on my own I wouldn’t survive. My parents pay for my phone, insurance, and food, and they don’t charge me rent. I just pay for appointments, my car, and student loans. Even then my budget is pretty tight.
I’m lucky in a lot of ways. I’m able to hold a job. For a lot of people with more severe issues, I probably sound perfectly healthy — and independent. I’m not ungrateful for my ability to do things for myself. I know there are many out there who are even more dependent than I am. Outwardly, it may not look like I’m reliant on others. But I am, and this is my struggle with defining independence.
You could say I’m independent within my means. That is, I’m as independent as I can be. Is that a cop-out? Or is it simply adapting?
This constant struggle tears me apart. In my mind, I make plans and to-do lists. But when I try, I can’t do them all. My body simply won’t function in a way to do everything. This is my life with invisible illness.
It’s hard to prove that though, when you have a hard time literally standing on your feet.
I asked my mom once if she thought I was independent. She told me I’m independent because I’m in control of my mind: an independent thinker. I hadn’t even thought of that. I’d been too busy focusing on what my body couldn’t do without help. I forgot about my mind.
Throughout the years, my experiences with chronic illness have changed me. I’ve become stronger, more determined. If I’m sick, I can’t stand to waste the day even though I can’t control it. So, I read. If I can’t read, then I watch a documentary, so I can learn something. I always think of something I can do to feel productive.
I work though nausea, pain, and discomfort every day. In fact, how I cope with my illness recently helped an able-bodied friend with her own stomach problems. She told me my advice was a godsend.
Maybe this is what independence looks like. Maybe it’s not as black and white as I tend to look at it, but rather a gray area that looks lighter on some days and darker on others. It’s true that I can’t be independent in all senses of the word, but maybe I need to continue looking for ways in which I can. Because maybe being independent just means knowing the difference.
Erynn Porter has chronic illness, but that didn’t stop her from getting a BFA in Creative Writing from the New Hampshire Institute of Art. She’s currently assistant editor for Quail Bell Magazine and a book reviewer for Chicago Review of Books and Electric Literature. She has been published or is forthcoming in Bust, ROAR, Entropy, Brooklyn Mag, and Ravishly. You can often find her eating candy while editing her own work. She claims that candy is the perfect editing food. When Erynn isn’t editing, she’s reading with a cat curled up beside her.