In the months after my brain surgery, many people have been incredibly kind and supportive. They’ve sent me emails and commented on my Facebook posts, with many of them expressing the same sentiments, “You are so brave,” “You’re attacking it,” “You’re a warrior.”
These are encouraging things to say. There’s no question there. I’ve been through surgery and radiation, and I’m currently on a pretty serious round of chemotherapy. People know that tumor cells are in my body, and they want me to fight them. But I’ve discovered that this kind of support just isn’t for me.
For starters, these words make me sound less than human. In fact, they remind me of what folks will say about my six-year-old Maybelle, who has Down syndrome. Sometimes they call her a “precious angel sent from heaven” or “sweet” even when she’s not being particularly sweet. Sometimes they even tell me I’m “so brave for caring for her.” I know they are being kind, but it seems as if they’re not recognizing Maybelle for who she is. When she pushes another kid or throws her iPad on the ground, she isn’t a precious angel. She’s an obnoxious kid, a precious angel sent from the garbage bin.
The truth is, I’m not brave for caring for my daughter — she’s my daughter and it’s my responsibility to raise her. And I’m not brave for fighting my brain tumor — it’s my life, my body, and I want to live. In large part, these kinds of supportive statements are the things you say when you aren’t sure how to engage or when you want to step back from a conversation. It can become an invisible process: “She’s so brave. I could never do that” means “I’m glad I’m not going through a medical nightmare like that,” while “precious angel” means “I’d never want to deal with a kid who has Down syndrome.”
The fact is, I wouldn’t have thought I could handle any of this, either. If you’d asked me seven years ago, I would have felt that all of this would be too much to handle. I probably would have even felt that the people who are fighting brain tumors or raising children with intellectual disabilities are somehow stronger than me. And yes, I would have called them “brave.” But now I’ve realized that as much as that kind of rhetoric was an effort to support someone, it was also an effort to keep myself at a distance, to keep me safe. These are things that happen to other people, not me. But, here I am today, at 42 years old,with a brain tumor.
As it stands, my treatment is going well, but imagining myself as a brave warrior doesn’t help with that. My body isn’t a battleground, and I don’t want to fill my head with thoughts of one part of my body attacking another part. I don’t want to imagine my body being invaded. Those are the thoughts that keep me up at 2 a.m. and chill me to the bone. And so I try to take a different approach. I imagine the cancerous cells lying down, drifting off to sleep.
In the end, these bad cells aren’t all going to go away — all the oncologists have said this. Some have simply shrunk and are out of energy. They just need to be allowed to disappear.
I don’t want my body to be a war zone, a place where I have to fight. Instead, I want to be calm. I want to be soothed. I want to breathe.
Alison Piepmeier is the director of the College of Charleston’s Women’s and Gender Studies program. You can read more from her at alisonpiepmeier.blogspot.com.