Author: susantaylor

I spent much of 2015 in waiting rooms and the remainder of the year, waiting.

Waiting rooms are often brutal places. I often wondered why doctor’s offices even bother to have a TV anymore; most everyone is looking at their phones. A departure lounge set up, with personal power outlets and an atmosphere that encouraged headphone usage, would be closer to how most people use those spaces. Both departure lounges at the airport and waiting rooms have TVs, of course, but the TV in the waiting room demands your attention because of the atmosphere of the hospital. At least, it draws your attention out into the room, rather than letting you filter into the restful bubble of your cell phone.

Waiting rooms are often spaces of confinement: as my mother put it, you are often held hostage to other people’s conversations. Much of the time we spent in waiting rooms last year was dominated by political conversations; the meaning of displaying the Confederate flag, the danger of outlawing guns, and so on.

The day after the 2016 Presidental Election results were in,  I reflected on those conversations overheard in waiting rooms. Why, after all of the listening I did in waiting rooms across Tennessee, did I not see it coming? The politics of white nationalism, in particular, were discussed in public in those waiting rooms; why did I misinterpret that as just the same racist talk I heard so often growing up instead of the radical politics that it is? I had a happy delusion that racism as a political force was on the ebb.

Setting aside that line of inquiry and acknowledging that no one has a crystal ball, I think there was something to my impulse to think back to those overheard conversations in waiting rooms as politically important. On the one hand, there is a politics that people bring into the waiting rooms (I remember wanting to intervene in the conversation about gun politics and point out how the statistics these people were quoting had been twisted around), but there could also be a politics generated within waiting rooms.

Airports are so overtheorized as sites of mobility, as non-places, as sites of the cosmopolitan, yet apolitical in a way: mobility is what stands in the way of politics. In a way, the hospital is the inverse of an airport; spaces of mobility in a closed system – mobility within a confining system, rather than portals out into a globalized world system. Hospitals are just as cosmopolitan, if not more so: people from different social strata are pulled into the same space and made to wait together for slots of time with a doctor. They could be spaces of solidarity – patients waiting in a hematology/oncology waiting room are likely to have similar diseases in common.

What if the people waiting together organized democratically? What if the caregivers passing through waiting rooms networked with each other to support each other? What makes waiting rooms political yet prevents politics is the way that time is sliced up there: there is just enough time to strike up a conversation on whatever issue of the day has arisen but not enough to achieve much solidarity with others.

Last year, I had talked my mother’s doctors into letting us make the six hour trip to Mountain City to spend Christmas at home. We were required to spend 100 days in Nashville near the hospital, and Christmas day fell on Day 85 or so: enough time had passed that they knew the stem cells had engrafted, and her condition was stable enough that we were bored. They would not give us the green light to leave until all her bloodwork came back the day of, and we when they begrudgingly said everything was clear, we immediately hit the road; a windstorm was coming, which ultimately killed several people in West Tennessee. We took our tiny Christmas tree, ornaments and all, and headed east.

My mother wanted to stop at her favorite grocery store on the way home, and we picked up some provisions. I expected that we would eat Christmas dinner, so we only picked up a few things. After all, we only had about three days leave from Nashville.

As it turned out, one of my family members had the flu, so my mother and I had to stay quarantined; a major disappointment, but beyond anyone’s control. The nature of leukemia and stem cell transplants puts you at the mercy of diseases and bugs unfolding around you. I was always afraid that I would transport some virus or bacteria to my mother inadvertently; this is especially a concern with things like whooping cough, which can live on your clothes for hours.

Since we could not go to the main Christmas dinner, I pulled together what I could from the scant provisions that we had bought on the way home on Christmas Eve. I remember a tiny ham, and a plate of pickles: I thought the pickles looked nice on a little red plate we had.

We opened presents after that; I had one thing for her, and she gave me two things.

And that was Christmas.

In all honesty, I have tried hard this Christmas not to reflect too much on what was. Christmastime is a moment of hope in the Christian calendar; leukemia dashed our hopes. This time last year, she was getting better, quickly. Last year, she was making a strong recovery.  Now? I was brave enough to go to the same places that she and I used to shop, but I broke down when I was trimming the tree.

My little home town has had the strange climate changed weather that seems almost springlike, but somewhat crisp. The landscape has the bleak feel that these Appalachian Mountains get after the leaves have fallen. The stress of graduate school and the end of the semester means that there is little time to think about the holidays before they are upon you; in my case, this year, a mercy. I have no parents to go home to, though I have visited their graves, and I have no children to become the center of attention.  I have friends and extended family, but this place has been changed: my family lives only in my memory.

Mountain City seems to lack the Christmas spirit, though I am sure that most of that is my perception. Still, I have a sense that the economy isn’t good; nothing feels lively. When I went shopping in North Carolina, I was stunned that I could find good parking places only a couple of days before Christmas. There were exceptionally good deals in some stores, yet it seemed like there were few takers. In Wal-Mart, I saw a man hold up a toy and ask in disbelief, “They want $25 for this?” and if you stop and think, that is more than two hours’ labor for many people. I stopped in a restaurant my mother and grandmother took me into since I was

I stopped in a restaurant my mother and grandmother took me into since I was knee high to a duck, as we say around here. The waitstaff were having a holiday get together in the bar area; a couple of tables had customers. The whole place seemed very subdued, even for a normal day in Boone. That being said, there were a number of people strolling down King Street, and Mast General Store was packed. To be blunt, it felt like a recession. Deep discounts, but only certain stores were bustling.

If my mother was still living, these are the sort of details we would have remarked on.

We would have looked out at the fog that has set down on us, obscuring town from the vantage point of town. We would have remarked that the cat has shown no interest in the Christmas tree, and recalled the tabby cat who turned over the Christmas tree years ago.  I would have told the story about my father, sick and beset with osteoporosis accidentally sitting on an old arthritic tom cat who had curled up on a cushion the same color as his fur near the Christmas tree one year (the cat squirmed and my father stood up; the cat was fine). And what else? Among other things, that is what loss leaves you with: the “what-if” question “and what else?”

Perhaps she would have seen something I didn’t and we would have been laughing over that; perhaps she would have just been watching televangelists, driving me crazy.

Perhaps, but who knows? There would have been some unknowable something else.

Research never gets far from experience, at least as I practice it. Over the last year, my interests and concerns have changed profoundly due to personal circumstances; while I spent most of the past decade thinking about urbanism and consumption in Japan, the events of the last year refocused my attention on my hometown and on the challenge of caregiving in rural Appalachia. In 2015, my mother was diagnosed with Acute Myeloid Leukemia; she received a stem cell transplant which was successful “on paper,” but she died of a rare complication.

Our experiences and our interactions with the medical industry, hospitals, doctors, and social workers left me with a great deal of personal anger, but also a sense of what is wrong and what is right in how care is approached in a rural setting. Beyond the slogans of “hope” and “defeating cancer,” everyday life can take on a terrible character when another person’s life hangs in the balance of every decision and action you take as a caregiver: “Did I wash the vegetables well enough?” “Should I call the doctor about this symptom, going against the wishes of my mother who is too tired to drive 45 miles to the oncologist’s office, or should I let her rest?” “Is the public restroom clean enough for a woman with a compromised immune system?” Ultimately, “did I do the right thing?”  Just as much as medicine, which is a practice, caregiving seems to me as a practice; the trouble is that unlike doctors, caregivers rarely have the benefit of training and experience. Given that I have training in anthropological methods, particularly in linguistic anthropology and photography, I want to begin to speak to these problems.

I have a couple of goals in mind for this blog. First, I want to reflect on what it means to labor as a caregiver. I also want to explore the ethics of caregiving, or indeed, how ethical decisions get outsourced onto caregivers. Second, I want to reflect on rural caregiving, especially on the discrimination that patients often face by virtue of being from “isolated” rural communities. Third, I want to reflect on the economic changes that I see taking place in Appalachia and the south more broadly. Fourth, I have a strong interest in local history, particularly economic history, but also cultural history; I plan to write short pieces on themes that pertain specifically to Johnson County, TN and the surrounding counties. In particular, my mother was an artist, and last summer, she told me about local artists who inspired her when she was young, as well as some whom she thought painted pure kitsch; interestingly, the artists she spoke of were all women, and they are often characterized as folk artists, whether they had formal training or not.  I want to share the preliminary research I did on these women and their art. Finally, I plan to share my own photographs.