I’m being researched

Everyone keeps saying cancerland will eventually stop being so strange, that eventually I will become accustomed to the smells and the colors and the multiple times each day that “BC Cancer Agency” pops up as the caller on my phone screen. It’s been three months now, exactly. Today’s my three-month cancerversery, and I still find it profoundly strange and destabalizing, despite the fact that I have now amassed so much cancer knowledge I could write a second dissertation on the subject. There are really significant ways my life has radically changed in the past few months, and really mundane ways in which it is utterly the same.

A major marker of the radical-cancer-shift in my life is this little pedometer that I have in my possession. I am supposed to wear it to track my steps per day. I need to do this for seven days in a row. I am utterly incapable of completing this simple task. You see, I am part of a research study, and for some reason they want this information. That’s right, I’m a research subject. The research project is about women with breast cancer and how exercise improves the chemo experience (anything would improve “the chemo experience,” dare I say, which is the worst experience ever), but I suppose the goal is noble- to make having access to a gym and a trainer the standard of care for women with breast cancer in chemo. I could also write some kind of significant article about being a research subject, which is profoundly weird. Wow, I should totally do that. I could be a researcher researching the researchers researching me.

Anyways, back to why it’s so strange, being researched, that is. When I go to this gym space, lots of people are more than a decade older than me, and most of them are more like two or three decades older than me. There’s a bit of horror around my presence in that space, and a whole lot of “you’re so young.” Sometimes women in that space who are, like me, searching to understand why cancer happened, ask me questions like if I carry my cell phone in my bra, because they saw on TV that the cell-phone-in-bra-phenomena causes breast cancer in young women. I feel defensive when this happens, and anyone who’s worked with me in Latin America knows the best location for a Nicaraguan cell phone in hundred degree heat is always in the built in bra of a tank top. I assure you, that’s not why I have cancer.

Other times, reconstruction comes up, and a couple of women have now told me that if they were young like me, they would have had reconstruction, but it doesn’t matter now that they are “old” and “not like me” and “don’t wear tight shirts.” This is such a perplexing conversation to me, especially because it repeats again and again with women older than me who have had breast cancer: what is it they are actually saying? That women over fifty are not sexy? That I need to have breasts to be sexy because I’m young? That younger bodies need to be sexy, and that one must have breasts to be sexy if one is appropriately girly? That I will stop caring about sexiness on the day I turn fifty? That I should wear tight shirts so people can see two breasts? I’m confused. As far as I know, people over fifty have sex, still want to be sexy sometimes, if not all the time, whether they have breasts or no breasts, and sometimes even wear tight (read: sexy, I think?) shirts, and also, there are clothes that are not tight shirts that are sexy, and people without breasts who are sexy, and there are people who have sex with one breast and presumably are just fine. It’s not like reconstructed breasts are right front and center in the sex realm, because they don’t have any sensation, people! Really, now. I find these conversations really interesting, when everyone tells me they made X reconstruction decision, but would have made Y decision if they were young, and so I should consider Y. My reconstruction decisions, though, are another post.

So back to being researched. It’s a quantitative study. Numbers. Rankings. Counting of steps. This kind of research kind of makes sense to me, but I’m constantly perplexed about all the ways in which I cannot be encapsulated as a research subject, into a number of steps per day and a 1-10 ranking of work-out difficulty. The steps, oh the steps. I can’t remember to wear this pedometer, so sometimes I shake it vigorously above my head, until the number of steps on the screen accounts for for my walk to the store, and maybe a little more- I don’t want them to think I’m inactive. Ah, the performance of good research subject- there it is. Here I am, manipulating their data so that they think I approximate what I think they think is “good.” Same with the ranking of my workout: each time when I get off the treadmill, I am asked to rank how hard I worked. I subtly shift– “well, I didn’t feel good today, so I’ll go with a low number to reflect my nausea,” or I think, “my heart rate was really high, so pick a higher number even though it didn’t feel very high,” and the truth is, I don’t know what I’m comparing to, so I just pick a number somewhere in the middle, lest they think I found it hard to exercise on a treadmill! I want to know, how is this accounted for? How is my ambivalence about the pedometer represented? What about the conversations on the treadmill about reconstruction, where are those in the data? Where am I, where is my body, my experience, me, in the data?

My body, my experience, me is not in the data. I exercise because it is supposed to improve my chemo-experience, but nothing is mentioned of the community of people with breast cancer, and the possibility that my experience is better not because I am exercising but because I am able to relate to a whole bunch of women on the same breast cancer trajectory as me. Instead, I am translated into a series of numbers and points. In a multiple-page questionaire, I was actually asked to rank my feelings 1-10, and to pick a number for how breast cancer changes how much of a woman I feel like. A number! I couldn’t answer this question. I literally didn’t know what they wanted. I wondered if they were asking about my femininity in relation to being hooked up to and flooded with poison every other week? Or were they asking about if losing some of the body parts that make me an F on my passport made me feel less like a woman? And what did they mean by woman? I’m still floored when I think of that initial survey, and the assumption that one could answer a question about one’s embodied way of being in the world with a number. How utterly minimalizing.

Then there’s the “volunteers” and “students” and “PhD student researchers.” I can’t quite figure out what their purpose is, these mostly UBC students who seem to do little more than weave between exercise machines making small talk with women as they work out. Sometimes they take blood pressures and heart rates, and maybe they enter data or something, I don’t know. When they come to hover near my treadmill or bike station, I never know what to say to them. Technically, many of them are my peers- MA and PhD students at UBC. However, they would never know this. They never ask what I do. They already know enough about me: cancer. In relation to them, that’s all I can be. It seems I am supposed to ask them what they do, though, so I do, and they tell me they study exercise and physical therapy and cancer. I keep my identity secret, though I’d share if they asked, and insideI roll my eyes a little bit because it feels like they think they occupy a very special student-place in relation to those of us who are merely, cancer. It’s as though they cannot fathom that one of their peers- another PhD student- could ever inhabit this space of breast cancer, could ever be a body with cancer. I am just another body on a machine, my worth is as a research subject, not as a peer who is also a graduate student. I offered the information up once, to one of these people identifying herself as a “PhD student,” and she engaged this information briefly. Then I mentioned I didn’t feel I was getting enough of a work-out with the target-heart-rate, and she told me to trust her, she knew what she was doing, and she knew bodies on chemo, because she had lots of experience. At that point, I shut down completely. Obviously, I know my body best, and I know when I’m not working hard enough, and I know best what I need, chemo or no chemo. And yet, she’s “the researcher,” she knows, and presumably, I, the research subject, don’t know, because I don’t know “bodies on chemo” or have this kind of experience.

Except I am a body on chemo. I live from inside a body that receives chemo, and I am the one to animate and feel this body-full-of-chemo in the gym as well. I have this experience of being a body on chemo. From the inside. I think in fact, the researcher should trust me. How could anyone know better, from outside this body on chemo, what is best for this body on chemo?

And yet, I think I’m supposed to feel grateful. I don’t think I am supposed to complain or wave my critical feminist theory in any one’s face. After all, they are giving me a gym. They are letting me work out under the supervision of a really awesome and compassionate trainer. I think I am supposed to clap and smile and be grateful. What is it about this research project that engenders this particular kind of subjectivity, where I feel a need to perform thank-you-for-allowing-me-to-particpate?

I look, aghast, at my own research. My own participants. My own youth. They said thank you. They must have felt similarly. Thank you, because since we participated in your research project we got to make movies and have access to media tech, and so we now need to perform this same kind of thank-you that I feel I need to toss out every time I leave the gym. I know my project- an interventionist one- had this tendency. I try desperately to engage it in my writing. I think that qualitative work has a better chance at dealing with some of these complexities, though I know I delude myself somewhat in order to continue doing this work.

I cannot fathom any way in which this feeling circulating around and inside of the gym where we go to exercise and provide our rankings will emerge in the data. Quantitative data can’t do that. It leaves no space for my objection. It holds no recognition of the big, fat feeling hovering over each number I provide. It can’t account for how we relate to each other or situate one another as we are so busy learning how to be and do and embody researcher, researched, breast cancer patient, breast cancer trainer…

What’s incredible is that I have about seventy million more paragraphs to write about this… but I need to go work on my actual dissertation research. Youth media production project, I’m coming, and now that I’ve been a research subject, we got some things to talk about!

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