Dwelling October 26, 2016

I’ve been thinking a lot about community lately.

Several weeks ago, our community celebrated the life of 27 Darius Weems. Darius had Duchenne muscular dystrophy, and he was made famous at age 15 when his first trip outside of Athens, Georgia was filmed by his friends, who planned to get the MTV show “Pimp My Ride” to customize his wheelchair. The film, Darius Goes West, not only won awards, but established the Darius Goes West Foundation (http://www.dariusgoeswest.org/foundation/), proceeds of which go to finding a cure of DMD. About a month before his death, the FDA announced a new treatment for the disease.

This is a story of a community that got behind a group of young people with a dream. My daughter, who worked in the summers at Project Reach, a camp for disabled kids, was friends with some of these kids and knew Darius. It was the kind of thing that happens in my town of Athens, Georgia, a place that is small enough that it feels like a hometown, and large and progressive enough to always be interesting. As I sat talking with a friend about Darius, I was filled with pride for where I live.

I haven’t always felt this way. For much of my young life I wanted to leave, because life was elsewhere—in New York City, in Boston, in London and Paris. When I moved back after marrying my husband, I didn’t feel like I was returning to my hometown. As a youngster and an Irish Catholic transplant from the Northeast, I had grown up keenly aware of how different we were from our neighbors in the sixties and seventies. The University of Georgia art department, which had hired my father, was a wonderful place, with a coterie of artists who were bohemian and collegial. But the town itself was still a small Southern town. Furthermore, I grew up in the midst of school integration, and while necessary, it was chaotic. No, I didn’t feel I belonged, and I longed to get away.

Which I did, for a time, in graduate school in Boston. But it turned out that Athens was a great place to raise a family, and slowly, almost without my noticing it, I grew strong roots here. I am acclimated to the slower pace of life, the friendliness, the way you can be part of many different circles, and also the mild weather. Our kids grew up in a secure, settled community with a deep sense of home. Not that I am unaware of the myriad problems we face—extreme poverty, racial tension, stressed schools, crime. Sometimes these problems feel overwhelming. And yes, sometimes I fantasize about living in a more urbane, sophisticated place. But this is my place, and now it is filled with a rich network of friends and acquaintances, some of whom have known me since I was a child. I wouldn’t trade it for fancy living.

I remember reading in a college anthropology class about primitive villagers who believed that their village was the center of the known universe. Silly villagers! I thought. Now I see there is wisdom in recognizing one’s place in the world, esteeming it and working to make it better. Life isn’t elsewhere; it is where you are.

Reading the Patient, Reading the Text June 5, 2009

I broke my own rule, the last day of our workshop. Instead of keeping my focus on one of the participant’s texts, I focused on her, on what the startling absence of feelings and information about her mother’s illness and her subsequent fostering out at age eleven, meant. The piece was stunning, really, constructed in two parts: in the first, she describes with a child’s heightened sensitivity to sense, her mother cooking and cleaning, and yet also suggests an adult’s point-of-view when she writes: I wonder what dreams my mother had other than marrying her sweetheart and leaving her natural art ability wash away into the old style washing machine? There are wonderful descriptions of the freedom and fun the family of eight children had, the chicken dumplings her mother cooked–I watch my mother in our small kitchen standing and patiently waiting as she stirs another pot of chicken and dumplings–and then the information that her mother became ill and all the children were sent to other homes. There is nothing here about how that little girl felt. In the second part, she goes on to describe how she was burdened by chores in her new home, and how she longed to take ballet lessons, but couldn’t. In the piece there are themes of oppression and freedom, of dreams of artistry dashed, and a seeming identification with the absent mother.

In the discussion of the text, I mentioned the “presence” of an absence in the piece. This woman, a breast cancer survivor, as well as the survivor of her childhood family diaspora and a young unhappy marriage and subsequent single-motherhood, said, “Well, you know, sometimes it is like Pandora’s box. You are just afraid of what might come out.” We talked a bit more about how some things were very hard to look at. It was generally agreed on that we must look, but that it was sometimes overwhelming to do so.

James Pennebaker has done research that strongly suggests that people who have experienced undisclosed traumatic events before the age of 17 are much more likely to be chronically ill, have cancer or heart conditions. It seems that many if not most of the cancer patients I work with have had traumatic backgrounds, and this patient certainly seemed to. But the tricky part of working with people who, for their survival’s sake, have “encrypted” trauma, is that everything in them does not want to open that Pandora’s box, even if they intellectually understand that it could lead towards healing.

I thought of her piece as a whole–the fluidity of compelling childhood memories, then the less compelling reportage of feeling both needed and overwhelmed in her new life, and the ending, which seemed to not be organic to the piece at all: I have learned how to better understand who I am and to accept what I need to do to build onto the next level of who and why I am. Notice the stilted language.

I think we would have been better served to stick to reading the text, and let the patient make her own conclusions, to help her see not only “the presence of an absence” but to non-judgementally  observe the artistry: the two parts, the echoing themes of longing for freedom, of dashed hopes, the changes in language–the way it became less lived, more reportage. In this way, we reflect back to the patient, not what we think about her psychological state of mind, but what the text she has created conveys to us about her experience. This may seem like a fine distinction, but I think it has merit. She can then judge what she has written against what she wishes to convey, and from that stance perhaps move deeper into her own experience.

With many patients who have been traumatized, there is often a resistance to go back into their histories. In these cases, I have often found that writing fiction and not using the first person can help them get to the emotional truths of their experience in ways that going directly to their memories does not. In either case, though, it is important to read the text, not the patient.