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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Ancient Medicine and the Modern Physician: “A Harvest of Sorrows” March 31, 2014

He who learns must suffer

In our sleep, pain which cannot forget

falls drop by drop upon the heart

until, in our own despair, against our will,

comes wisdom through the awful grace of God.

—Aeschylus (525–456 BCE)

from Agamemnon 1, 179–1832

This past week, I had the pleasure of attending a seminar on ancient medicine and the modern physician on the UGA and Medical Science campuses.  With an opening presentation by Rich Panico, who spoke of the need for both “hard” or scientific competencies and “soft” or empathic, humanistic competencies, the mini-conference addressed the ancient physician’s use of performance, humor, case studies, and finally, errors, all of which were written about in what are now called Hippocratic writings, dating from the fifth century BC to the fifth century AD. It was interesting to glimpse across the centuries the roots of modern Western medicine.  It was particularly interesting to learn of the importance of rhetoric in ancient medicine, as well as humor.

 “And I will tell you a striking proof of this: many and many a time have I gone with my brother or other doctors to visit one of their patients and found him unwilling either to take medicine or submit to the surgeon’s knife or cautery; and when the doctor failed to persuade him, I succeeded, by no other art than that of rhetoric.” Plato’s Gorgias 456b-c2

 Much of the conversation revolved around issues of modern physician burnout (interestingly, ancient physicians were expected to be healthy and fit as advertisement of their skill) and physician vulnerability.  How do doctors protect themselves? was a question. Can physicians be compassionate without becoming mired in the suffering they witness?

This was a week when suffering and modern medicine were much on my mind.  My childhood friend’s mother died after a long downward spiral. She was at home, receiving hospice care, but her death was protracted and painful. Here is what my friend wrote me about it:

  My Mother is dying. She has not had anything to eat or drink for one week. The MSA completely eradicates the ability to speak OR swallow. Hospice should make allowances for these instances. My beautiful fragile mother now looks like a victim of Dachau or Bergen Belsen. It is not “natural.” It is cruel and sadistic. She is reduced to nothing, begging for relief with her eyes and with the clasp of her hand. Dying pets are treated with more dignity. Her poor, tortured, emaciated body cries out to be put to rest, to be left in peace. Christ on the Cross survived one day. My mother has surpassed him by six.

Another friend writes about her brother’s long illness, resulting from medical error:

 My brother had been sick for many years, actually, beginning with a routine root canal in 1986, which wasn’t treated correctly and became infected.  The infection had encased his heart by the time he went to the doctor.  That simple little thing led to two years of hospitalization and rehab, most of which he doesn’t even remember. The medicine that finally saved his life also made him almost deaf.  He eventually recovered from the infection, of course, but his health seemed permanently compromised thereafter. In the last 10 years or so, he was diagnosed with diabetes, rheumatoid arthritis and even at one point was being tested for TB.  All the medication he was on had a lot of side effects as well. How much any of these other issues stemmed from  problems originating with the root canal I can’t possibly say.  He was just never the same after that.

 Here are two impassioned reports of suffering.  My intention is not to point fingers at medical carelessness or error.  Yes, the first heart-wrenching account sounds a clarion call for better pain management for the dying.  The second is a tragic story of carelessness that cascaded into a litany of woes. Each case could be attributable to a variety of causes—insufficient monitoring, negligence, judgment errors, red-tape, lack of communication between physicians and patients or families.  I bring them to your attention because of the suffering described—suffering for the patient, the families, and one can imagine, the physician themselves. Pain and suffering are an inevitable part of doctoring.  Not all patients get well, not all patients survive.

For the sake of argument, I am assuming that these patients’ doctors were the of the same ilk as most of those I’ve encountered in my labyrinthine journey through the medical system: ethical, skilled and for the most part, caring. Most physicians I know are as fed up with the system as their patients.  For the physician, there is the added burden that sick people and their families invest him/her with almost shamanic powers, expecting the physician to perform the impossible.  As Heinrich von Staden so eloquently relayed last Monday in his talk about physician error recorded in Hippocratic writings, physicians reap a “harvest of sorrows,” by what they must witness.  How then do doctors withstand this inevitability?   How are young doctors trained to handle suffering?

Is the answer for the physician that he becomes invulnerable (if that is even a possibility) in order to protect himself from the suffering of others?  Is the answer to deny his own suffering as well?  The position of the physician is both privileged and fraught —she is privy to the most intimate struggles of her patients, and yet she must delimit her involvement in order to maintain her own authority and inner balance.

Perhaps the question of protection needs to be framed differently.  Rachel Naomi Remens, a physician who also lives with chronic illness, frames the question this way:

In recent years the question how can I help? has become meaningful to many people. But perhaps there is a deeper question we might consider. Perhaps the real question is not how can I help? but how can I serve?

Serving is different from helping. Helping is based on inequality; it is not a relationship between equals. When you help you use your own strength to help those of lesser strength. If I’m attentive to what’s going on inside of me when I’m helping, I find that I’m always helping someone who’s not as strong as I am, who is needier than I am. People feel this inequality. When we help we may inadvertently take away from people more than we could ever give them; we may diminish their self-esteem, their sense of worth, integrity and wholeness. When I help I am very aware of my own strength. But we don’t serve with our strength, we serve with ourselves. We draw from all of our experiences. Our limitations serve, our wounds serve, even our darkness can serve. The wholeness in us serves the wholeness in others and the wholeness in life. The wholeness in you is the same as the wholeness in me. Service is a relationship between equals.

What Dr. Remens expresses here gets at the most fundamental question for any healthcare provider.  We serve with our skill, but we serve first as humans who also suffer.  The more whole we are, the more in touch with our own limitations and our own suffering, the more able we will be to be present to those whom we serve.  I can tell you that as someone who has a little understood illness and chronic pain, it is not only the physician’s skill I need from him, but also his ability to stand with me in my situation, to acknowledge my pain.  This under-standing is an act of imagination, as is the ability to be present.  Listening to a patient, standing with her in her predicament, these are acts of healing not to be underestimated.

But you say, isn’t that the sure path to physician burnout?  Actually, I think it may be the antidote.  The physician can lay down the burden of fixing, of being super-human, when serving.  Wouldn’t the physician who can acknowledge that she is not the source of healing, but the midwife to the process of healing, have less stress than the physician who feels the entire outcome rests solely on her?

In the end, the world isn’t divided into the sick and the well, the healer and the healed.  We are all sick and well, all healer and in need of healing.  If we can stand in our common humanity serving each other, how much pain might be mitigated?

 

 

 

 

 

 

 

 

 

Inside the Circle February 5, 2014

Mary Gelpi in her January 27^th post, Unwell, Unafraid (http://25pillsaday.wordpress.com/2014/01/27/unwell-unafraid/), on her blog, Fibromy-Awesome, writes a cogent description of what living with Chronic Fatigue/Fibromyalgia is like:  “A crash day followed by a crash day followed by a crash day. Somehow it’s worse when you’ve been feeling well.  All the years I’ve been sick, all the crash days and months, and I still can’t remember how bad it feels. It always pulls the rug out from under me–more so if I’ve had good health. Over and over, I forget. How incapacitating it is. How depressing it can get. When you’re moving and doing and performing tasks, you don’t think about these things. You don’t have to. You’re fitting in and alongside the rest of the functioning, productive world and that’s how you like it.”

 

This is one of the best descriptions of living with CFIDS/Fibro that I’ve read.  But I winced when I read it, because Mary is my daughter’s age, and I hate the thought of her having to deal with the compromises this illness brings at her age. Yet I admire her for her honesty and spunk.  At twice her age, I still haven’t been able to figure out how to manage the push/crash cycle of living within the boundaries of this illness.  As she says, it is worse when you’ve had a period of time feeling well.  My vet once said animals heal more quickly from things like strokes because they don’t know they’ve had a stroke—they just want to chase the ball.  In a sense, our animal bodies just want to get up and go when we are feeling well.  We may know intellectually that we have to be careful, but it is so delicious to feel that small burst of energy, that we just go with it.

 

I think for me another difficulty is how I perceive myself.  Reacting to the role of invalid, which makes one feel in-valid, I sometimes push myself to go and do in order to experience myself  having both social roles and mastery in some areas of my life.  This isn’t always bad—on the contrary, I’ve been surprised at how often things turn out well.  But I have created a life in which there is a lot of down time.  From the outside, it would seem, perhaps, that the circumference of my life is small, but there is often great richness within that small circle.

 

I think perhaps the biggest problem is not just figuring out how to participate in life as a person with chronic illness, but also what attitude to take towards our own difficulties.  Ironically, for me when I was at my sickest, it was when I was able to accept my illness and release my expectations, that I began to heal.  I read Kat Duff’s beautiful book, The Alchemy of Illness, which I can’t recommend highly enough.  I learned radical acceptance from her, and found in that dark night of the soul that there is something in us that is not dependent on our abilities or accomplishments, and is our truest nature.

 

Yet as we heal, we are also asked to revisit the question of how to live our lives, with what attitude. It seems we have to resolve the issue over and over again, that it is never settled once and for all.  I recently came across this in Helen Luke’s book, The Way of Women, in an essay on suffering:  “A question to be asked in moods of weakness or depression is, ‘Am I grading myself or am I recognizing the golden opportunity to suffer and so deny to some small degree the ego’s demand for prestige?” She writes that deadly guilt is often inverted pride, and we have to be on the lookout for false values, as in “I ought to be like God himself, free of all weaknesses.”  However, and this is such an important distinction for me, she doesn’t equate acceptance with resignation.  “Hope for release is another thing, both natural and right, as are also the efforts to come out of a mood or sickness…..real acceptance will lead us to seek appropriate help.”

 

I want to be a productive, functioning social being, just like my dog will always want to chase the ball.  Living with this illness is never knowing on any given day who I will be, what I can do.  I can’t pretend that I like crashing.  I just hope I can get better at acceptance.