Embodied
December 20th, 2009
Since I was a child, I have always found our silences about bodies to be peculiar. We all have bodies and they all do certain, similar things, but it seems that part of becoming civilized requires the erasure of the bodily aspects of our lives from conversations, interactions, and texts. Don’t pick your nose, no potty talk. Gesticulating too wildly or an inability to sit still marks a person as less in control, and therefore, less civilized. But so much interesting stuff is left out by these silences. For instance, I wanted to re-write the Little House on the Prairie books to include the details about how they managed to toilet during those long,cold winters.
We are allowed, of course, to talk about the performative aspects of our bodies: how they look, how they appear to others. Women in particular learn whole codes about stripes, necklines, and hemlines as we try to make our bodies presentable to and likable by others, as they still are our interface with the world. It’s bodily sensations we often censor, anything beyond hunger, temperature, and maybe pain. And, despite the pink ribbons trotted out to support breast cancer research, we certainly don’t talk much about the actual disease. Maybe it’s because I am what my mother calls kinesthetic. I am not particularly good at sitting still, and I am happiest when I am dancing. Maybe it has to do with my mother-in-law’s observation about my extreme sensitivity to my own body. She likes to joke that I’m the only woman she’s ever known who can feel that she’s pregnant before I get a positive test. (It’s the dull low back pain I feel as the zygote implants in the uterine wall.) Whatever the reason, this silence about bodies part of civilization has taken more concerted effort from me to comply with. I find our bodily experiences of the world to be interesting, even if talking about them makes me uncouth. And now that my body is going through this unprecedented ordeal, my inclination is to make sense of it by talking about it. Hopefully not in a way that makes you uncomfortable, but I know no other way to let you know what is going on.
So with that preamble, let me share with you one of the strangest things about undergoing this treatment. I am transitioning from a healthy body to a sick body. That makes me a different kind of person in this world. At first, the marks on me were invisible. The two biopsies that were a part of my diagnosis caused me discomfort and pain, but with the right shirt, they could stay hidden. The chemotherapy-induced alopecia has marked me unmistakably and visibly with a new kind of body. A sick body. As a social scientist, I find it interesting walking around in a visibly sick body in a culture that works so hard to deny the inevitable decay that all our bodies face. It has repositioned me in my interactions in the world and therefore been revelatory about how things work.
There has been a social shift as well. Besides being physically marked with surgeries and the hairloss of chemotherapy, I have been involved in unprecedented interactions. At the most extreme, my private body is now diseased and therefore an object for medical inquiry and intervention. When my husband and I went for our first consultation with the oncology team, at the end of the meeting, they had me strip from the waist up and sit on the examining table with my hands on my hips. There were five doctors sitting around the brightly lit room looking at me. One by one, three of the five came up to me to palpate and measure my tumors. In any other context, I would be fairly certain I was getting felt up repeatedly by strangers, but this was a medical team doing their work. My husband and I exchanged a wide-eyed look, recognizing that we were entering a strange new world of meaning. To a lesser degree, now that I am hairless, men who would otherwise refrain from complimenting my looks regularly address me as “beautiful.” I don’t know if it is because I pose no threat to their wives, or if whatever social anxieties prevent a man from saying such a thing to another man’s wife are alleviated. Obviously, no one is after a sick woman, the thinking seems to go, so it’s okay for them to call her beautiful.
Or maybe they are just trying to help me cope with the transformation of my looks by reassuring me, regardless of what they actually think of a skinheaded lady. Whatever the motivation, the taboo is gone.
The first day I went out fully shorn, I wore the black button hat that my husband and I agree best hides my baldness. It was one of my few good days between Chemo 1 + Port Surgery and Chemo 2. I was somewhere between giddy and anxious about getting things done while I had the strength. After about 4 hours of running around, I stopped by the grocery store. I could feel my energy starting to flag, so when the bagger offered to help me out to my car, I said, “I think I’ll take you up on that today.” We walked to the car in silence. I sat in the driver’s seat and sipped my water and looked at my medication schedule while he unloaded the groceries.
Suddenly he said, “Ma’am. I couldn’t help but notice back there. And I want you to know, my momma had breast cancer. Twice. And she beat it twice. The first time,” he was eying the carseat in my Volvo, “I was really young. It was hard, but we got through. And I got to see something of my mother that most people don’t ever get to see. I saw how much strength and courage and love she had.” He rolled up his sleeve and showed me his bicep. I could make out the familiar ribbon shape tattooed in black over his own brown skin. “I see that strength in your eyes. I know you’re gonna be like her. Your kids are gonna be alright. I know you’re gonna make it.” I was absolutely speechless. I just blew him a kiss between my tears and thanked him for sharing with me.
As I drove home (getting lost, by the way –– have I mentioned how cruel the deletion of short term memory is when you are still relatively new to a place?), I wondered about this new person I was in the world. When you are pregnant, you become different in that people who would never ask to rub your belly approach you and do just that. Perfect strangers tell you childbirth stories. You are, in part, a symbol of something that everybody experiences on some level or another.
What does it mean to symbolize cancer in the world? Certainly the emotions it evokes in those who it has touched are not nearly as sentimental or idealized as those who grow moony eyed over maternity. I guess I am finding out.
One thing that’s for sure, it does not always mean getting the kindness that the young man showed me. I have been having difficulty with my port pain and in need of a bra that wouldn’t chafe against it. I got a suggestion to go to a fancy lingerie shop to buy a particular European brand. I arrived at the store, all lavender scents, soft music, and whispered requests, after I had just finished exercising, wearing a colorful cotton tye-dyed scarf around my head. When I went in to inquire, the saleslady kept averting her glances away from me and doing everything she could to avoid interacting with me. I don’t think I am exaggerating that she had a not very well hidden look of horror on her face. Of course, like many women’s retailers these days, the walls of the place were replete with pink ribbons and their accompanying slogans. Despite the declarations of female solidarity promised on those posters, this woman showed me no such thing, as if she could catch my cancer by smiling at me and treating me like a person. Needless to say, I left the store without buying a thing.
My older daughter wrote poetically about the little ship of me riding on these uncertain and turbulent waters of cancer. The astonishing part to me as an educator is how we are set loose on uncertain waters, navigating with a cornucopia of drugs to manage our own side effects (and the side effects of those side effects) with instructions like “Take 1 tablet every 8 hours for nausea as needed.” It is only through follow-up calls that take all morning that I have learned the mechanisms of the various antiemetics and can therefore be strategic about what to take when. And, unfortunately, this past week, I learned a painful lesson about using past experience to predict present needs as well as the foolishness of trying to titrate off of medications while you sleep. Because I had only needed Zofran for the first 4 days after Chemo #1, I figured I should be pretty good to start titrating my dosage on day 4 or 5. I stretched out my schedule, giving me more than 8 hours between doses, took one at bedtime, and hoped I could get through the night.
No such luck.
I woke up in the middle of the night with horrible nausea. I had stretched the window for the Zofran too far, apparently, and it took about a day and a half to get enough medication back in my system to not feel nauseous again. And the triggers for nausea, there are so many. Fatigue. Strong emotions. Anxiety. Strong smells. Arguments. Who knows what else. It all gets right down to my gut. The nurse I spoke with after this unfortunate event advised that I just stay on Zofran the whole time I am doing chemotherapy, backed by Ativan and Marinol as needed. Ativan makes me dopey and Marinol gets me a bit stoned, so she has, in essence, told me that, in addition to having short term memory problems, I might be a bit of a druggy for the next few months. This completely messes with my conversational self-regulation, so the times I have gone to meetings or to teach, I feel like all the effort I have exerted in my adult life to not be a babblemouth is for naught.
This entry was posted on Sunday, December 20th, 2009 at 1:16 am and is filed under Treatment. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.