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

 

 

 

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Body and Voice: Finding Self-Trust in the Midst of Illness October 24, 2014

Nothing can throw me off-center faster than a bout of fibromyalgia.  Recently, I had an experience of intense pain that sent me into panic mode. I almost crawled to my doctor for medicine—I was way beyond the yoga/swimming/meditation panacea.  Worried that this might be something else, that my body was really betraying me big-time now, I fretted over Google, surfing for any information I could find. I had finally done it, I thought, finally ignored my body long enough, pushing through pain and discomfort, and now my body was roaring back. After much searching, I found a relevant article about trigger points that seemed consistent with my symptoms.

Having a cognitive framework relieved my anxiety, and luckily, the meds worked. Or time worked. Something worked. I changed some posture habits, began some exercises. But what interested me was those days before I got some kind of handle on what was going on.  I experienced fear–a profound sense of  ego disintegration, of losing my sense of power, of my confidence in navigating the world. I found myself casting about for answers, as if someone else could tell me what was going on. It was only when I was rested, in less pain, and able to amass information, that I finally was able to regain my poise.  I remember the moment when I thought—I can make an assessment, I can make decisions that will help this. I can trust myself. Energetically, it felt as if I was consolidated, rather than fragmented.

The fragmentation I experienced briefly was akin to what Arthur Frank in his seminal book, The Wounded Storyteller: Body, Illness and Ethics, describes as the chaos initiated by a major illness or event like a heart attack.  Frank himself, a sociologist, experienced both cancer and heart disease. Through his own experience, he was able to describe the stages of  our psychological response to illness, the first being chaos. He cautions those who love and work with people experiencing chaos, to simply witness it, not rush to tidy it or minimize it. He describes the burden placed on the ill person to be cheerful, positive for others. He posits that it  is only by experiencing the chaos that we can find our way through to a new narrative, whether one of accepting an illness and finding meaning through the quest, or indeed restitution. “Seriously ill people,” he writes, “are wounded not just in body but in voice.”  Without body integrity, we lose voice. Without voice, we also are fragmented.

I’m glad that this whole experience happened over a matter of weeks, not months or years.  But I was reminded again of how real the journey is from chaos to narrative. I’ll end with the quote prefacing Frank’s book:

“I had grasped well that there are situations in life where our body is our entire self and our fate. I was in my body and nothing else…my body…was my calamity. My body…was my physical and metaphysical dignity.”-Jean Améry

–

Prisoners April 25, 2013

My long time yard man is in jail again.  He had left given me a paper a few days ago with a list of treatment facilities and told me that his probation officer told him if he wasn’t signed up by the following Tuesday, it was back in the clinker for him.  The list made little sense, but I called around and discovered that a) there were no Level II treatment facilities in town and b) they cost more than he made a month, especially since he would not be able to work.  I tried to get back to his overworked probation officer, but it when I did, it didn’t change anything.  He was going back to jail.

One of my dearest friend’s husband threw her off after a twenty-five year marriage.  My friend is a gentle, bright woman, who trained in Europe to become an architect, and then got a landscape architecture degree while raising her child here.  Her husband didn’t want her to work, wouldn’t let her get a green card.  So here she is in her fifties, with a punitive ex-husband who is living with a woman her daughter’s age, and no career or means of support but a lousy low level tech job.  She is facing impoverishment.  No matter how she looks at it, there is no way out, only frustration and anger.  She feels the prison cell walls for give, for a possible way out, but can’t find one.

I’ve been sequestered indoors for a month due to allergies that add to my body’s already overburdened immune system.  Never healthy, the added feelings of illness and inability to get outside has been increasingly demoralizing.  My daily walks with my dog and  sitting in the garden have been curtailed.  These small things make my daily routine pleasant, and take me out of the kind of neurotic preoccupation with my own health ill people are prone to.  My sense of isolation increases, and I feel slapped up against my body’s limitations again.  It is hard to see a way out.  I forget that this illness waxes and wanes, and all I see are the walls coming closer.

The poet Ellen Bass, in her poem, “In Praise of Four Letter Words,” writes: In lockdown within our own skins/we’re banging on the bars with tin spoons/screaming in the only language strong/enough to convey the shock/of our painful need…..

I’m reading Bonhoeffer, the biography by Erix Metaxes.  ( Dietrich Bonhoeffer was the German theologian involved in the conspiracy to assassinate Hitler). I’m currently at the end, when Bonhoeffer is in the Gestapo prison in Berlin.  There is a very moving description by another inmate of how, despite the fact that they were in solitary cells, the doors of the cells remained open in the morning and evening as the prisoners returned from eating and washing.  “During that time, we were eagerly talking to one another through the slits in the hinges of the doors separating us….we seized every opportunity to inform each other of our thoughts and experiences.  Only somebody who has been in strict solitary confinement is able to understand what this chance of talking to somebody meant to us during those long months….”  He goes on to report how Bonhoeffer “always cheered and comforted me…” and how he was always full of hope.”  (pgs. 498 &499).

I find this passage very moving.  I think, to some greater and lesser degrees, we are all in the solitary confinements of our own experiences, circumstances, thoughts and feelings. We can not always change the facts of our circumstances, but we can “inform each other of our thoughts and experiences….” and in this way find relief in the telling. If we can learn to be the ear the other needs, we my also give comfort.  There is always the possibility in this kind of exchange, of hope.

I am hoping my yard man is released soon, and that my friend finds a job suitable to her abilities, and that the insurance company will finally approve the treatment my doctor has been trying to get me for a year.  But in the meantime, I’m keeping the door of my cell open.   

Trapped in the Ice January 22, 2013

I once found an old book at the flea market called “Be Glad You’re Neurotic”.  Just the book for me!  Written in 1936,  it has chapter headings like “You Hate Yourself. No Wonder!” and “Are You Getting the Most out of Your Insomnia and Dreams?”  I did not make this up.  I prop this old book on my shelf, title out, reminding myself to be glad.

Having a chronic illness is a sure way to intensify a neurosis.  I’ve been sick since Christmas, sequestered in the house for the most part, too exhausted to go out.  All plans for the future are on hold.  I’m waiting for the verdict from the insurance company as to whether, this time, they will approve my treatment.  Instead of being able to let go, to read and relax and wait to get better, I go into overdrive, fending off the feeling of impending doom.  Will I be able to keep up my walking routine?  To sing in the choir?  To write steadily?  My mind goes into ever more solipsistic rounds, and I become more tense, contracted– unable to heal.  I feel guilty for having a lousy immune system.  I read a book review about primitive tribes and identify with the sick woman left to die because she is no longer of use. I see her struggling to keep up with the tribe, only to die alone on the road. That’s me, I think, falling farther and farther behind. My mind turns in ever smaller circles, like the little swan trapped in the ice in “The Ugly Duckling.”  I can not stay in the present, or take deep breaths.  My mind is turning too frantically, even as my body is inert.  Intellectually, I know better, but I’m in the grip of something I can’t think away.

This impasse is only broken when a friend calls unexpectedly.  Like me, Mari has a chronic illness and has lived with all the difficulties of people not understanding, of insurance companies that are unresponsive, of dreams that have to be let go.  I find myself articulating to her half-understood frustrations and fears.  All the thoughts and feelings that had festered in the sealed room of my mind come pouring out.  Yet, once they are not mine alone, they seem less formidable.  I feel myself taking deeper breaths, feel my body loosen.  Mari shares practical advice, and more importantly, she exudes a confidence I no longer have that thing will turn out.  Holding onto her confidence for me, I can let go of the death grip I have on the outcome of my illness.  I feel supported, and humbled.  I do not have to be God.  I can relax.  I am reminded again that I am not alone, and I am invited to experience a feeling of being held and nurtured.

To heal, it seems, we need each other.  I can do my yoga practice at home, but doing it in a group seems to be a fuller experience.  I have had profound experiences of healing from healing touch, from massage, from the caring physical therapists who have put me back together, from chats with friends, from therapists, from writing groups, from the liturgy.  And each time, I feel humbled and grateful, called back to Reality as sacred, freed from my ego’s need to control.

Before Mari’s call, my story about my illness was one of loss and desperation.  Yet, as she offered her generous insights, I was able to reframe my story.  My feeling of helplessness diminished and my sense of agency grew, even as I was able to let go of controlling the outcome. My story of isolation became a story of hope.  In the book, Narrative Medicine: the Use of History and Story in the Healing Process, Lewis Mehl-Madrona, MD,  talks about the importance of community in helping someone re-author their story.  “We need the group to re-author our stories.  Rarely can re-authoring be done in isolation.”

We need others to help us heal, although not everyone can help you re-author your story, as Naomi Shihab Nye says in this poem:

You Have to Be Careful

You have to be careful telling things.
Some ears are tunnels.
Your words will go in and get lost in the dark.
Some ears are flat pans like the miners used
looking for gold.

What you say will be washed out with the stones.
You look for a long time till you find the right ears.
Till then, there are birds and lamps to be spoken to,
a patient cloth rubbing shine in circles,
and the slow, gradually growing possibility
that when you find such ears
they already know.

Thank you, Mari Braveheart-Dancer, for being those ears.