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.

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Shame/Grace June 19, 2013

Two nights ago, our children from Bethesda were visiting, and we had a party with a few friends.  I had just come back from visiting my sister, who was appalled that I didn’t have an iPhone, and didn’t text.  We were talking about the pros and cons of iPhones, when one of our guests, a man of bottomless curiosity, asked what the name Bethesda meant.  “It’s in the Bible,” he said, looking meaningfully at me as if that meant I should know the name.  “Well,”  I said,  “I have read that book any number of times, but I can’t remember everything.”  So he whipped out his iPhone and looked it up.

 

This is what he found on Wikipedia under Pool of Bethesda:  “The name of the pool is said to be derived from the Hebrew language and/or Aramaic language. beth hesda (בית חסד/חסדא), meaning either house of mercy^[3] or house of grace. In both Hebrew and Aramaic the word could also mean ‘shame, disgrace’. This dual meaning may have been thought appropriate since the location was seen as a place of disgrace due to the presence of invalids, and a place of grace, due to the granting of healing.”

 

I hadn’t really cared about the name, but this grabbed my attention.  It brought home to me how ancient the twinning of shame and illness is.  And even though we are modern people who believe that we no longer “blame the victim,” both for those who are sick and for  others around them, I think shame still plays a potent role in our experience of illness.

 

In my own experience of illness, I often find that along with the pain and fatigue comes the vinegary presence of a lingering guilt.  I may tell myself it isn’t my fault that I am sick, but I feel as if it is.  I wonder how much of that conditioning goes back for hundreds of generations, when sin and sickness were seen as one and the same?  Or is it the American belief that we can do anything if we try hard enough, which makes failing at wellness such a trial?  No one wants to be a burden to others, no one wants to fall behind.  When you are sick, though, it becomes hard to feel you are contributing or participating in the life around you.  To be an invalid is all too often to be in-valid.

 

As for how others respond to sickness, I think as a society we find chronic illness in particular, unacceptable.  We don’t have mechanisms to cope with it.  Fear probably plays into this, as it did for the leprosy patients at Carville, Louisiana who were taken from their homes and deprived of family and name, so that the remaining families would not be burned in their homes or run out of town.  Leprosy, in America even in the twentieth century, was seen as the fault of  ill.  Today, we use fighting metaphors for cancer, and yet what about the person who doesn’t “win” against cancer?  Is it because they didn’t fight hard enough?  We tend to turn our backs on people who aren’t winners. It is too painful for us.

 

Here is the first stanza of a poem I wrote recently.

 

 

What do the healthy

have to do with the ill?

Why would they want

to hear the news–

that the body is fragile

and we live at its will?

 

But what about grace? What about healing?  What about the image of healing waters?

 

John O’Donohue has written that when we are in our deepest suffering, that we should offer ourselves the oil of compassion, because we are experiencing the most essential aspect of being human.  It is suffering, he says, which allows us to truly connect to others. Yet, how hard this is to do!  How much easier to blame ourselves, and to struggle against our circumstances.  How hard to sit with what is, and look for the blessings there.

 

Kat Duff, in her wonderful book, The Alchemy of Illness, which I read at the worst stage of my illness, doesn’t see illness as the enemy to be struggled against, but as part of the human experience which offers opportunities for spiritual growth.  I have found that in my own life, while I wouldn’t wish this illness on anyone, it has brought me many gifts as well.  Healing, it seems, is not just for the body, but for the soul as well.  I have seen in the cancer patients that I’ve worked with great healing as they jettison a lot of unneeded baggage, and find their true voices.

 

I love the image of healing waters, of being suspended in them, of washing away all that burdens you, both physically and spiritually.  Water is receptive and holding, cleansing and renewing.  Here is a photo of the pool of Bethesda.

 

Our children left today to go back to Bethesda, which I hope will be a place of grace for them.  Richard left with his iPhone.  I’m taking my iPhoneless self for a swim.

 

 

 

 

 

 

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.