clinic comfort station
For several years, I have periodically visited a hospital clinic to see a specialist about my anemia. The clinic — Hematology/Oncology — mainly treats very sick people. As I have waited in the waiting room, mentally I have set myself apart. “That’s not me,” I have thought with willed conviction, seeing a person in a wheel chair across from me or hearing another person’s muffled crying in the alcove where they take our vital signs. (An essay I wrote on a moment in this waiting room, where I witnessed a doctor ask his patient to dance, is published here: link.)
I was there again in this clinic a few weeks ago, on a Wednesday after lunch. Typically, the mood is subdued. It’s a very serious place. This time, though, the emotional container seemed to have burst. As I stood at the check-in desk, a woman ran into the waiting room from the adjacent treatment area, sobbing and calling for a doctor by name. Couples came in holding hands tenderly. I saw a woman, about my age and very thin, shuffle in. As she leaned on the check-in desk to state her name, her white tshirt clung to her trunk and I could see that her abdomen was the site of large tumors. She and her husband sat near me. They murmured together, about the tumors. He was a very good helper: he listened, he placed his hand on her back for a little while and then removed it (so as not to tire her out being helped, I thought), and he did not take over.
I tried, as usual, to stay detached, to think of myself as not that sick and therefore not of them. But I couldn’t hold the pose. What was it about this day? The chemistry of it, perhaps. My thoughts went in a different direction than usual, more stark. I ruminated on sickness and health not as a binary but as a continuum. We are all on it, and our position on the continuum changes as we go through life. And maybe we can find ourselves occupying two points at a time on this continuum. For example, although I have diabetes as a diagnosis (and it is a disease), I take care of myself and identify myself as a healthy person.
Maybe it would be better to give in, I sometimes wonder. On this day, I did for some reason feel vulnerable as I sat in chairs, waiting. “We are all sick, or will be someday,” I mused. It turns out, although I could not have predicted it, that my body is not quite as I thought: link. I do belong, not to the cancer club, but to the human one.
waiting for patients
leaf stitch word 
This summer, for an article and on suggestions from a friend, I’ve been reading a lot of scholarly disability theory. I am still struggling with the proposal that disability is the nature of human life and human bodies, and that accepting and supporting and accommodating disability is not only an obligation to the formally disabled, but a more compassionate and…flexible, maybe? way to see ourselves. I think it sounds right? But it’s hard to internalize. I am not sure this comment is even entirely coherent!
I believe that, and it is the basis for universal design in education (which is not something MIT seems to have embraced). Have you read this, in your studies? http://eliclare.com/books/exile-and-pride
I have not, but it looks excellent! I will definitely check it out. I am such a huge fan of universal design. It is so smart and such good engineering (and also of course humanly righteous).
Huh, I actually think this ties back to our long-ago conversation about climbers (and other athletes) talking constantly about injury. I enjoy it because it recognizes that any body, even one working at a very high level, will always experience some lack of ability. That seems very peaceful and positive to me. (Peaceful in the sense that can coexist with enormous ambition and drive!)
I’ve been avoiding wheat and gluten for several years. Although I don’t have celiac, I have a sensitivity that causes intestinal distress. The good news is that the diet is not hard to follow once you get the hang of it, especially now that grocery stores (and not just Whole Foods) carry a good selection of wheat/gluten-free foods. It’s true that eating at restaurants and friends’ houses can be challenging, but I find I can usually find something good to eat (friends are accommodating) and at times I’ve brought my own food. You’ll adjust quickly, I think, given that you’re already disciplined about food!
That’s reassuring, Claudia, thank you. I am adjusting, with quite a bit of self reminders. (E.g., “I eat this cereal, not that.”) Tonight I baked for the first time — after I bought the ingredients (a hunt for a few new things), it was as easy as baking always is. And the cookies were enjoyed by all. I do believe friends are and will be accommodating. But no more last-minute ordering of pizza on nights I don’t feel like cooking but people still feel like eating! For now, this is taking forethought. No last-minute anything.
For last-minute, no-cooking evenings, Max and Leo’s pizzeria in Newton makes a very good gluten-free pizza. And I love the gluten-free pizza crust mix made by Chebe. I think I saw it at Whole Foods recently, but I’ve been ordering mine from the online Gluten-Free Mall, a great source for all kinds of safe food. Another gem is A New Leaf grocery store in Needham, which is well-stocked with an amazing selection of gluten-free items. It’s always reassuring to go there because I realize that I don’t have to feel deprived; there’s still lots of good food I can eat.
Thank you for the helpful *local* info, Claudia. I see pizza on the weekend menu, suddenly. I’m sure my daughters will appreciate it. We haven’t had it in a month, and, you know, it is a childhood staple.