Feeling at Home at Christmas December 9, 2016

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

 

 

 

The Rest of the Story July 5, 2010

I am trying to find the woman who saved my life a year ago.

Just when you think you have “processed” a trauma, you find out, you’ve only just begun.

I called the EMT unit on Duck, N. C.  I thought they might have her name as she was a witness.  The fellow said it was unlikely, and it would take about a week, but he’d look it up.  He said they try to keep all that information confidential. I said I understood, and I would give them permission to give the woman my name, but that I very much wanted to tell her the rest of the story.  That seems important to me.  If she hadn’t seen me, if she hadn’t run into the water with her clothes on, if she hadn’t sent her mother to get the lifeguard, another large wave would have taken me out and that would have been that.  Instead–out of all the hundreds of people partying on that beach last July Fourth–she saw me and saved my life.  Not only that, but she allowed herself into my pain.  When she came to me, I grabbed her hard and cried, “please don’t leave me.”    She looked right into my eyes and said she wouldn’t leave me.  And she didn’t

My daughter said that when they loaded me into the ambulance, a woman who matched her description  had been at the ambulance door, weeping.  As terrible as it was for me, it was also painful for her to be wrenched out of her celebrations, her relaxing beach vacation, her sense of  “all’s right with the world.”  I hope she had a good stiff drink that night.

As I explained to the EMT what happened and why I wanted to contact her, I started crying.  It all came back, that feeling of vulnerability, of pain, of complete and utter helplessness.  Everything I haven’t allowed myself to feel as I focused on each small step of my recovery. Every time I’ve mentioned it this week, the same thing happens.  It is as though, as a friend suggested, my body had to heal and become strong enough to experience all these emotions.  I write about trauma, for pete’s sake, I should know what to expect.  But it is taking me by surprise.  What I had taken as strength seems to have been postponed grief.  But this feels like good grief, as if my tears are finally re-hydrating me, the way a summer storm revives the earth, clears the air.

If I find her, this is what I will tell her: that on the one-year anniversary of my accident, I sang in the choir, and that the psalm for the day was Psalm 30,

“O LORD my God, I called to you for help
and you healed me.

³ O LORD, you brought me up from the grave ^[b] ;
you spared me from going down into the pit….

You turned my wailing into dancing;
you removed my sackcloth and clothed me with joy…”

I will tell her that my son asked me to play tennis after church, and I was able to do it.  I will tell her that after our tennis game we went swimming. I will tell her that I am taking the tango lessons I’ve always dreamed of taking.  I will tell her that I went to a cook-out last night surrounded by old friends.  I will tell her that I’m beginning to write again.  And yes, it was a hard year, wearing a body brace for six months, unmitigated pain, that I was often  impatient with the slow process, that I sickened of the color of our bedroom wall, of having to sleep in a hospital bed.  I will tell her it isn’t over, the pain is still there, but it is nothing compared to the joys that surround me.  Nothing compared to the knowledge I have of how precious each day is, of how deeply I am loved.

I hope I find her. I have so much to thank her for.