Living in the Body February 16, 2015

Last Wednesday, after a particularly stressful week, I slept in for the first time in ages. I was tapped out in all ways, and even though I got up early and ate breakfast, I just had to crawl back into bed. I felt guilty about this, and when my housekeeper came, I explained to her that I was so tired, but that I had to get back up to the salt mine (my attic study).

“Oh, Mrs. Sara, no, if you are tired, you must rest. Es tu cuerpo!”

The way she uttered, “Es tu cuerpo,” stopped me in my tracks. It seemed self-evident to her that my body should be treated like the most treasured child. She said “tu cuerpo” with such tenderness and concern. And of course she was right.

I do know she is right. But my default attitude is to treat my body like a balky mule. I should know better. My illness has taught me many things, among them to pace myself and to listen to my body. Ironically, when I begin to have a bit of energy I seem to forget those lessons. I’m all on with doing, not listening. My body is at times my cell, sometimes my ally. It has betrayed me, it seems, or have I betrayed it? What is this “I” anyway,  how is it possible to be apart from the body it speaks of? Gregory Djanikian in his poem Mind/Body writes of this tension between mind and body:

How do they survive, riven

as they are, the one undoing

the other’s desire?

Tell the body to outrun

the mind, and the mind smirks,

whispering too loudly

this way   this way,

blocking all the exits.

And the body, luxurious

sensualist by pool side or in bed,

doesn’t it hear the mind’s

impatient machinery ticking

it’s time   it’s time?

 How do you reconcile such differences? It can be exhausting. My mind wants to be to get to the salt mine, and my body wants to luxuriate in bed.

 Joyce Sutphen, in her poem, Living in the Body, describes how the body will “pull you down into a sleepy swamp,”

 Body is something you need in order to stay

on this planet and you only get one.

And no matter which one you get, it will not

be satisfactory. It will not be beautiful

enough, it will not be fast enough, it will

not keep on for days at a time, but will

pull you down into a sleepy swamp and

demand apples and coffee and chocolate cake.

My body does remind me of a child in its insistent demands. And yet when my children were irritable, demanding, out of sorts, I not only fed them, but I gave them attention. It is amazing how a little attention, rocking in the rocking chair, holding them, singing to them, for just a few minutes, would soothe them.  So I am wondering if instead of beating my body into submission, I might give it a little attention.

Ash Wednesday is coming up. I grew up with the idea of mortification of the flesh, and struggled all my life to subdue my demanding body. But I am wondering now about maybe taking a different approach. A yoga teacher friend suggested using Lent as a time to befriend our bodies, to be gentle with them. I’m going to try this approach–to feed myself good things, to rest when I’m tired, stretch when I’m cramped. To maybe not only accept this imperfect body, but to love it. To cherish it. Mi cuerpo.

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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.

Heart Goals January 3, 2012

I was supposed to be writing down my goals and aspirations for the New Year, but I couldn’t focus. With the tsunami that is Christmas, I had stopped writing for several weeks.  In the aftermath, I came down with the flu.  For anyone else it would be a bothersome interruption to their “normal” life, but for me it was the threatened return to a prolonged state of invalid-hood.  How was I supposed to make plans, if I didn’t know from day to day what level of energy I had to work with?  Could I make one plan for well me, another for sick me, and then try to merge them?

The day before, as I struggled asthmatically to walk the dog a few blocks, I had met a friend jogging blithely down the street.  She’d stopped to chat, jogging in place, her cheeks rosy, her breath puffing energetically in the cold air.  She was training for a half-marathon, she said.  It had all started a year ago when she joined the WOW Boot Camp.  I should join! she said. It is so much fun! I muttered something about not being able, and she just laughed and said sure I could, I could do it more gently.  I thanked her and went on—how to tell her that too much exercise poisons my cells?  No point.  But it plunged me into a welter of envy, grief, despair that I was unprepared for, that I thought I’d dealt with and put to bed years earlier.  Here they were, leering at me with their ugly faces, their voices enumerating my bottomless inadequacies.

I dream that I join the bike group three of my friends are in. I tell Todd about my dream.  “Don’t even think about it,” he says, “besides, they’d resent you for slowing them down.”   It all pricked, hurt, felt raw.  I saw my friends passing me by in the grand parade of life, and it felt as if I were being punished for doing something terribly, terribly wrong.

I’ve been reading about having compassion for yourself, about holding your pain with tenderness.  So one day, driving across town by myself, I did as suggested, I put my hand on my heart and said, “I care about your pain,” over and over to myself, feeling pretty silly and mechanical.  But then a funny thing happened:  all those tears that I’d been holding back automatically, started up.  I had begun to feel as if I couldn’t cry; I hadn’t cried in so long. I would like to report that I had a good therapeutic cry, but I was driving to see someone who couldn’t handle a swollen, red-eyed me, so I sniffed the tears back.

I finally got back to my journal, feeling overwhelmed and inadequate.  I scribbled the usual frets and complaints and then wrote this sentence: “Old griefs had got her by the throat; she could not move.”  Ah, I thought, ah. I get no pass; there are no shortcuts.  I can teach about writing until the cows come home, but I have to do it.  Knowing is not enough, it is in praxis that the healing happens.  Even if it means encountering the old griefs, the ugly envies, the swampy despair.  Especially if means that.  Except, hand on heart, “I care about your pain.  Your pain is worthy of attention.”

Maybe this is my true goal for 2012.

Miracle Cure October 7, 2011

Last week, one of the participants in my class asked me if writing really did heal.  Well, that brought me up short.  If  it did, I suppose, I should be the healthiest gal on the planet, with the amount of scribbling I do.  But I’m not, I’m really quite sick, and have been going through a “bad” patch for quite a few months now, so that the bad patch is looking like the bottom line.

“Well,” I answered her, ” it is not a magic bullet, clearly, and you need to get physical things checked out, but finding your voice really is empowering…”  I went on to quote research, etc. She looked at me a bit dubiously.  I drove home rather dispritedly.  Was I fooling myself?

I went home to find an email from a long lost friend from the back of beyond, from what my son might call my “hippie” days.  She has started a restaurant in Baja California, and sent pictures, and it looked so beautiful that I immediately wanted to hop a plane and just disappear into that lush oasis by the Pacific.  Maybe there I could be healthy.  My friend, who is deeply spiritual and deeply a free spirit, emailed me when she heard I was struggling with my health, with a “Miracle Cure.”  I absolutely had to try it, she said, and I was back to our free wheeling days as waitresses, where she often wanted me to try substances.  I knew she sent it out of love, and for a nano second, I was tempted.  But I’ve been around the block too many times, I know the chemistry of my body and what is and isn’t working, and I know there is no miracle cure.  Just a long slow process of doing the best I can with the best docs I can find, keeping up with the research and accepting the reality of my life.

The confluence of these two events together got me to thinking.  I’ve been reading Radical Acceptance, by Tara Brach.  She is a psychologist and a practicing Buddhist, and her work speaks to the same issues of healing underlying issues of self-judgement, shame, anger and fear that often surface in our classes.  No matter what the reason people come to the classes–grief, pain, suffering, these emotions are the ones that often surface.  How does writing help heal the ways in which people deal with these often overwhelming emotions?  One way can be to create an open inquiry into our feelings–both as sensations and emotions.

Emotions are a combination of physical sensations and the stories we tell ourselves….they can cause suffering until we experience them where they live in our bodies.  If we can mentally note unfolding experience, the sensations and feelings, layers of historic hurt, fear and anger may begin to play themselves out in the light of awareness.  (Adapted from Tara Brach, Radical Acceptance)

This is not an easy process, nor a one time process, but a process of learning to sit with feelings.  How can writing help?  We can begin by naming sensations and feeling them in our bodies.  Here is one way to go about doing this:

Do a body scan.  Where is the tension?  Is it in your stomach?  In your journal, can you describe the sensation?  Can you make an image of it?  Now, what emotion do you associate with that sensation?  Does it signal danger, fear or anxiety?   Now, what story do you habitually put with such a feeling?  Notice that there are three parts to this process.  After you write about the sensation/feeling/story, take a deep breath and check yourself again?  Has it intensified?  Passed?  Could you withstand it?  Are you able to perhaps address it?  Treat it as an old enemy or friend?  Ask it what it wants to tell you?

This practice of noticing, describing, befriending, can begin to slowly to quiet us.  We can gradually begin to inquire lovingly into ourselves, into our felt experience of being in the world.  We can begin to notice stories which have had a hold on us which may not be true.  We may begin to notice areas of our lives which we habitually neglect.  Our journals can be the safe arms within which we can pour out our feelings, even the emotions we are most ashamed of.  This process can free the energy we use to resist our feelings to instead move through them, and thus have more energy to meet life.

Is it a “Miracle Cure?”  No.  But it is a way, one way, to help us heal.

 

 

 

The Alchemy of Illness July 27, 2011

Miserable and, (though common to all) inhuman posture, where I must practise my lying in the grave, by lying still, and not practise my Resurrection, by rising any more.

 

–John Donne, Meditation lll Devotions upon Emergent Occasions,

 

Felled again by illness, I am advised to rest, the one thing I do not do well.

 

I was fine nine days ago, having managed a road trip and a two week family vacation fairly well.  I just had time to congratulate myself on that feat when the too-familiar tingling sensation that precedes a fever crept up on me.  I chose to ignore it, and the following day, I was struck by a more severe headache and chills.  By that night I was in full-blown distress—fever, chills, body racked by joint, muscle and skin pain.  My life dissolved into misery—I seeped in a nasty brew of worthlessness and self-laceration, the good of my life leeched away by pain and weakness. I felt alone, isolated by my pain, which, like a jealous lover, kept me all to Itself. It felt as if I were being punished for some grievous yet unknown sin.  It didn’t matter knowing my bodily integrity had been invaded an infectious agent. In the thick of illness, it felt as if I’ve been cast into a dark pit by some Malevolence.  It felt personal, and only the language of the Psalms seemed equal to expressing it.

 

Two days later, still ill, but upright, I was able to consider less feverishly that my illness was a course correction, that I was “off the mark,” which is how Buddhists think of sin.  Buddhists, it seems, look at illness as an opportunity for enlightenment, that the illness itself is he cure, not the affliction.  Even John Donne believed that in the symptoms of illness were the seeds of healing, if we could attend to them.  I am still working on this process of dialoging with my symptoms, but what interests me now is how I (and we) so often think of illness as a failure.  What if we didn’t, what if we simply accepted our illnesses as perhaps necessary time outs?

 

I’m reading Nabokov’s Speak, Memory, and he recalls his childhood illnesses almost fondly, and how they seemed to enhance both perception and imagination.  In his novel, The Gift, based on his early memories, he writes “Mother unhurriedly shakes the thermometer and slips it back into its case, looking at me as if not quite recognizing me, while my father rides his horse at a walk across a vernal plain all blue with irises.” (G, 33).  For Nabokov, we might imagine, illness gave his sensitive self time to process all the sensory information which, as a synesthete, bombarded him.  It gave him time to investigate his imagination.  Instead of diffusing his sense of self, it seemed to solidify it.

 

Another contemporary writer, the splendid Anthony Doerr, in his incredible short story, “Afterworld,” (The Memory Wall, Scribner) describes an elderly Jewish woman, Esther, who had, as a fifteen-year-old epileptic and an orphan, escaped the Holocaust.  In the story, she is saved from the ovens by a doctor who saw value in her.  Despite the accusations hurled at her that she should be “put away,” that her illness rendered her worthless, in-valid, it was this very illness that gave her a unique sensitivity which the doctor recognized and valued. Now, in her eighties, the epilepsy and hallucinations that both plagued her and gave her great imaginative riches, are no longer controlled by medicine.  In the present time, she is being taken care of by her grandson, Robert. “In Ohio seizures flow through Esther….The seizures no longer seem to impair her consciousness so much as amplify it….Maybe, she tells Robert, during her clearest moments, a person can experience an illness as a kind of health.  Maybe not every disease is a deficit, a taking away.  Maybe what’s happening to her is an opening, a window, a migration….”

 

Kat Duff, in her classic The Alchemy of Illness, also speaks about illness as an alchemical transformation that offers the sufferer an opportunity to engage deeply in spiritual processes. She quotes Paracelsus, a renowned physician and alchemist of the sixteenth century:  “Decay is the beginning of all birth…the midwife of very great things!”

 

No one chooses to be ill.  And I certainly hope to regain some degree of health.  Yet here it is, and I do have a choice in how to address this illness, how to imagine it, how to engage with it.

 

 

 

 

 

 

Prisoners March 8, 2011

It has been a rough winter, no doubt about it.   I’ve had flu, strep, and what now looks like pleurisy.  Every time I got up, another wave knocked me down.  I finally acknowledged that I had to resume my old habit of resting and pacing myself.  It was hard to have to acknowledge that.

I wrote in my journal that having this illness is like being in prison: you are confined, the world passes by without you.  Also, you never know when you will be violated, not by another person, but by some passing virus or bacteria.

Perhaps because that image of prison was on my mind, I found myself reading about Lori Berenson, the American political activist held in Peru for the past fifteen years on trumped of charges of terrorism in the Sunday New York Times Magazine (http://www.nytimes.com/2011/03/06/magazine/06berenson-t.html ).  One of the curious things she talked about was how carefree she was when she thought that her sentence wouldn’t be commuted . At the beginning, many terrorist prisoners, like Berenson, had life sentences. “It was somewhat carefree because you didn’t have any concrete sense of the future,” she told me. In a similar way, when I was sickest with CFIDS,  I also had no future.  There was only the present moment, and it was, in a sense, freeing.  As I got better, one of the hardest things was learning how to cope with a sense of a future, with participating in life.  How to apportion time and energy?  What goals were worth working for?  How to re-enter the stream of life, not as I was before, but in a new way that respected my limits, but also tested them?  These were and are difficult issues.

Another prisoner, Aung San Suu Kyi, recently freed from house arrest, talks almost wistfully about her house arrest.  Now she is exhausted by the demands of political life; then she got up and did her yoga and meditation, and worked in her office.  Then she had a sense of being in control of herself, even if she was not able to be a player in her country’s future.

I am happy to be in the world, even if to do so requires nun-like bouts of rest and saying “no” more often than “yes” to social activities.  I want to forget that I have this illness, but it doesn’t forget me.

Another way having this illness is like a prison sentence is that it feels like punishment.  Like Job, I search and search for the sins that have brought me to this place.  Like Lori Berenson, I feel falsely accused.  Like sufferers of lupus, Multiple Sclerosis, and TB before us, patients with CFIDS are often held responsible for it. I want to protest my innocence and be acquitted.  But as the DoDo bird said in Alice in Wonderland, “There is no judge, there is no jury.”  There is only the absurd world of this disease.  Made even more absurd and unbearable by the lack of understanding around it.  Today’s Science Times had a very good article about the difficulty of defining Chronic Fatigue Immune Dysfunction Syndrome (http://www.nytimes.com/2011/03/08/health/research/08fatigue.html?ref=science).  After last month’s article in Lancet which maintained that graded exercise and CBT could improve the lives of patients with CFIDS, many people have come up to me to tell me the good news.  Only the fact is, they have no idea of the complex immune, endocrine, and circulatory issues that I have to contend with, no idea of the level of exhaustion even mildly overdoing exercise can cause, no idea of the sensory overload that can catapult me into a relapse.  They have no idea of idea that sitting at the computer in the time it takes to write this post means I’ll  have to rest for an hour.

They have no idea.  Because they have never been to prison.