Word Medicine

Writing and Healing: exploring the art of healing and the healing of art

Feeling at Home at Christmas December 9, 2016

bonehouse

I have passed out of mind like one who is dead

I have become like a broken vessel.

Psalm 31, verse 14

The challenges of living with a disability or chronic, invisible illness are heightened this time of year. For me, at least, and I suspect, for many. Because there are more calls on my limited energy, because I can’t entirely eradicate the specter of a Martha Stewart Christmas, because I want so desperately for it to be a magical season, I am more exhausted and frustrated than ever. Even for a “well woman,” Christmas is like pulling off a major Broadway production single-handedly. I now understand why my mother, when she cursed, said, “Christmas!” She had six children, an artist husband and not a lot of cash. She worked tirelessly to make it fun and beautiful and it was, but it cost her.

The dilemma of how to participate in life while also respecting one’s limitations is heightened  this time of year. This year, I’ve been thinking not only how to accomplish what needs to be accomplished, but also the kind of experience I want to have—as well as the kind of experience I want others to have. As Gertrude Mueller Nelson says in her profound book, To Dance with God, “This year we want our Christmas to be different. We want to be touched by the season—moved at a level that lies deep in us and is hungry and dark and groaning with primal need.”  The days grow shorter, and a primitive anxiety underlies our preparations, not only about the return of the sun, but also about whether our needs for belonging, contentment, and joy will be fulfilled. We want to feel really, truly, at home.

But when you are disabled or chronically ill, it is difficult to feel at home in your body, any time of the year. There is the daily management of energy, pain, protocols, pills. There is the sense of being left behind, of having “passed out of mind” from our communities. There is the internal management of our stance towards our illness, the battle between acceptance and resistance, the struggle between resentment and gratitude.

“The body itself is a dwelling place, as the Anglo-Saxons knew in naming it banhus (bone house)……” wrote Nancy Mairs, who was afflicted with MS. Many years ago, I picked up her book, Remembering the Bone House. The book is a memoir of how, despite depression and multiple sclerosis, she reclaimed her body and her life: “Through writing her body, woman may reclaim the deed to her dwelling.” She insisted on pushing against her limitations to participate fully in life, while never denying the impact of her illness. Yesterday, I read she died at the age of 73 last Saturday. The NYT obituary notes her aversion to such euphemisms as ‘differently abled.’ “I refuse to participate in the degeneration of the language to the extent that I deny that I have lost anything in the course of this calamitous disease….”  In her many essays about living with illness, she insisted on both facing the reality of her condition while also finding the good in her life.

“To view your life as blessed does not require you to deny your pain,” she wrote in the     introduction to Carnal Acts.” It simply demands a more complicated vision, one in which a  condition or event is not either good or bad but is, rather, both good and bad, not sequentially but simultaneously. In my experience, the more such ambivalences you can hold in your head, the better off you are, intellectually and emotionally.” *

In another essay, “A Necessary End,”  from A Troubled Guest: Life and Death Stories (2001), she discussed “the role of affliction in perfecting human experience….(it is) simply an element in the human condition, to be neither courted nor combated. To refuse to suffer is to refuse fully to live.” *

Perhaps this Christmas, I can let go of perfectionism, and only do what I can. Maybe this year, I can accept my illness as simply an element in the human condition. Maybe I can dwell more easily in my bonehouse, not berating myself for my shortcoming, but comforting myself.  And maybe, just maybe, I can then be present to whatever grace comes my way.

*New York Times, December 8, 2016

 

 

 

 

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.15719053

 

 
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