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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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.

 

 

 

La Vida January 26, 2011

Today is cold and blustery.  The rain finally gave out after almost twenty-four hours.  I woke in the night to hear it pelting angrily at the roof and windows, and I hoped our hundred year old house would not spring any new leaks.  This morning there were a few last hiccups of rain, and then scudding low gray clouds.  I couldn’t pull myself out of bed for my exercise class, whether because of the lingering virus Todd and I have been passing back and forth, or the exhaustion that is always at my elbow, ready to take over.  All my pretty plans evaporated.  It would be a day of letting what would be, be.

Thankfully, G., our Peruvian housekeeper came after missing a week because of snow.  The house was beginning to turn into a monster, making me feel even more out of control, so I looked forward to her ministrations as I always do.  G. came to me  over a decade ago, in the midst of the worst of my illness, when I could barely stand up.  The first time I was supposed to meet her, I drove all around town, losing my way.  I was still so sick with fibro fog that I couldn’t navigate the town I had grown up in.  When we finally did meet up in the parking lot of a video store, there stood this young, beautiful woman.  She did wonderful work, but even more than that, over the years, we have shared all the ups and downs of “La Vida”, including teenage children, stubborn husbands, the deaths of those close to us–all in an animated Spanglish.  She is such a bright presence, laughing over the animals’ antics, enthusiastically rearranging the furniture, conferring over various domestic decisions.  I call her my angelita.

Today she told me about her talented, impetuous son, a musician studying film Atlanta.  At twenty, he is living at home to save money, but he also wants to live as if he were independent. She feels he is in danger of failing the school they have borrowed money to pay for. He is in a relationship they feel is distracting him from his responsibilities. I have watched  G. and her husband work hard to become legal, sacrificing their own comforts to give their two children every opportunity in this country.  We shake our heads and shrug.  La Vida.

The door bell rings and it is B., our itinerant yard man.  He stands there dripping wet in his jacket.  The trees toss wildly in the wind; it is freezing. “Sara, do you have any work?”  I know that he has probably walked miles from the other side of town in this god-awful weather, to earn a few bucks.  He tells me his pension hasn’t come in yet, he just needs to eat.  We have a long history, B and me.  I’ve long given up the idea that things will change for him, an idea I worked hard to help realize in the first twenty years of our acquaintanceship.  I was encouraged at Christmas–things seemed to be getting better for him, he was going to school to learn to read (he has a learning disability) and he was going to church, trying to “get himself together.”  But he came by a few days ago and he had been drinking.  This is how it goes.  Today, I had  little money and  little work, but enough.  The overgrown dead plants in my garden needed cutting back, a chore that I’d put off.  I had just been thinking yesterday that the garden looked raggedy, that I wish B. would come by.  And here he was.

Tired as I was, I knew I’d feel better if I got out and walked.  Besides, I hate the guilt of shorting my dog on her walks.  The air was bracing, and it felt good to be out walking, moving through world.  The light played over the streets and trees and houses the way it does often at the ocean, patches of illumination giving way to shadow.  A flock of starlings landed in the bare branches of an oak.  The air smelled clean from all the rain.

Walking, I though of our priest’s sermon, how he always remembers the poor, admonishing us to reach out to those who have less than us.  I’ve noted on my blog before  Nancy Mairs, poet and essayist, saying that “all persons have abundances and all have lacks….your abundance may fill someone’s lack, which you are moved to fill….”  This remains one of my touchstones.  To me, G. and B. and I are all poor, in our own ways.  G and B perform physical task for me and I give them money.  But there is so much more to the transactions than these simple facts.  There are years of trust, loyalty, mutual regard.  So on a day when I am keenly feeling my own lacks, I am also feeling my keenly my abundance.

 

 

On Being a Recluse April 9, 2010

“And then there’s a lecture by Cornell West, and a wonderful Tchaikovsky concert, and how about going to see Spunk at the Morton?”  My friend’s breathless voice reels off the plethora of activities available in our college town this weekend.

I love my irrepressible friend, she of the bubbling enthusiasm and indefatigable energy.  I hedge.  I don’t know how to tell her I’m in no shape to do any of these things. I’ve been active lately, and she’s gotten used to it.

I would have loved to do all these things in my parallel life, the one I live in my imagination.  In my parallel life, I not only volunteer at my son’s school, ride bikes with my son and my husband,  go to concerts and plays, but I also have redecorated my house and give dinner parties “a plein aire”.  I’ve managed to get my novels published and I travel around teaching.  My husband and I vacation in Greece.  I get up early, work out with my personal trainer, and go to bed late after earth-shaking sex with hubby. Well and often.  I collect original art and sing jazz at local dives for fun on weekends. And oh, I just won an international tango contest and my photographs–just a hobby–hang in collections around the world….

In my actual life, I slowly and gingerly make my way into the day. If I’ve “overdone it” in some way–either physically or mentally–the day before, as I did yesterday and the day before, I am in pain and stiff from head to foot.  If I’m lucky, I’m out of bed by eight. Usually not. If I haven’t rested my still recovering broken back, the twinges of pain become adamant sledgehammers by three in the afternoon.  My personal trainer is my dog, Maisie, and on good days we take a half hour walk.  On bad days, like today, I struggle for fifteen minutes, the air in my lungs like knives, and flinging myself on the couch as soon as we return.  I then sort out the tasks that have to be done–teaching preps, doctors visits, the endless filing of claims–from the goals I’d like to get done–work on novel, finish essay–and I try to get the first done so that I can get to the latter.  Some days it is a personal victory to merely get the bed made, the dishes put away, the exercises done and maybe an hour at my desk before brain fog or pain make it impossible. Sometimes my despair at the necessary smallness of my life overwhelms me. On good days I have the energy left over to see friends, to go to a movie, to a party.  And when I’m there, I look and act “normal” and nobody thinks of me as sick.

No one has any idea of the careful husbanding of energy it has taken to have that moment. I even fool myself.  Then, like Cinderella, the clock strikes and I am back in my rags and ashes.

Probably one of the least understood aspects of chronic illness is how it shapes or distorts one’s identity, especially one’s social identity.  We are social animals, after all.  My need to connect with the world, to be part of a social matrix, is just as strong as in a person who is not sick.  But I cannot physically keep up a “normal” level of  interaction.  And I know I confuse people with my popping up and fading-out routines.

So, the question is, how to satisfy the desire to connect with the need to withdraw?

Hillary Mantel, who won this years Booker Prize for “Wolf Hall,”  says she became a writer because of illness.  One thinks of Keats, writing poetry as he is dying of TB, of Virginia Wolf”s essay, “On Being Ill,” of John Donne’s Devotions Upon Emergent Occasions, his meditations on health, illness, and suffering, of D.H. Lawrence.  Forced by their health to withdraw from the active world, they nevertheless were passionately engaged, sounding the depths of  their own experiences and sending the world dispatches. Writing, they refused to be obliterated as personalities by illness, refused to let illness define them, even as they reported, like journalists at the front, on the losses illness entailed.

When I was in sixth grade, I wanted to be Brenda Starr, the star-eyed, red-headed reporter .  I remember how avid my twelve-year-old self was for experience of the world.  We spent a summer in Mexico and I remember thinking that I wanted to travel the world as a journalist or work in the UN.  That girl lives on.  She’s just sending dispatches from a very different place.

How Does it Feel To Dance? January 7, 2009

I wanted my twelve year old, who is a sensitive soul, to see the movie Billy Elliot, which is currently a hit on Broadway. I had remembered how much I enjoyed it years ago, but had forgotten what a terrific movie it was. As a former dancer, I wanted to share my love for dance with Adam. I also wanted him to see a story about a boy who was artistic and still a real boy, and how important it is to be true to yourself, especially to your passions.

I hadn’t anticipated what conflicting feelings the movie would bring up. I have fibromyalgia, and many days my body feels as if it is encased in a cement cast made of pain. But seeing the movie, I remembered when everything made me jump, twirl, soar. I remembered dancing past exhaustion. In the movie, when one of the judges at the Royal Academy of Dance asks the twelve-year old Billy what it feels like to dance, and he answers that “it feels like fire….I forget everything…I feel like I’m flying,” tears came to my eyes. Yes, that is what it feels like. To be so one with your body, so alive! My tears were for the dancing I would never do again, for the body that had been so supple and strong, so free of pain.

In my enthusiasm, I showed Adam an ancient photo of my sixth grade recital. There I was in front, my arms long and graceful, my position perfect. But on my face I had the most anxious look. “Why do you look so weird?” Adam said, and I said it had something to do with not wearing my glasses. But looking at my partner, her arms not so perfect but her face suffused with joy, I knew the expression wasn’t just the product of myopia. It was also a product of anxiety, of wanting so badly to get it just right and the fear of being imperfect.

Later that night I looked at recent photos of myself. I am overweight, not young, but there is a softness to my face. There is enjoyment. There is acceptance. You would be hard put to put the photo of the young girl with the one of the woman. Kat Duff, in her wonderful book, The Alchemy of Illness, talks about the transformations that can occur in the crucible of illness. I know that for me, I’ve been forced to give up the illusion of perfection and the need to constantly prove myself. And that is a grace.

I do dance, sometimes, when the opportunity presents itself and I am well enough. And sometimes I feel the fire and forget myself.

And yes, Adam enjoyed the movie.