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.

Advertisement

Incantations October 30, 2010

In our workshop this week, we ended up talking a lot about the sounds of a piece, and how each writer has her own signature sound.  This was most apparent in rhythm.  We noted that one writer’s prose has a “stately” feel to it–understated, elegant, with gentle lifts and falls.  Another writer’s work surges forward in an urgent, emotional tide that builds to a climax, then dissipates, just as a wave does, and ends in a peaceful resolution.  Still another writer’s work could be distinguished by her rhythmic repetitions.  All her work has an incantatory quality, the kind of repetitions you find in witches’ spells, or in prayers.  That is how the work comes to her, she says, she doesn’t choose to write like that.  She just does.

Gregory Orr in his book, Poetry as Survival, writes that incantation is the third “ordering” power of the lyric, “capable of dealing with even more extreme disorderings, catastrophes so powerful that the self is unable to shape them towards the coherence of story or the complex concentration of symbol.  With incantation, the self discovers that it can be sustained, if all else fails, through rhythmic repetition alone.  In these instances, incantation is like a woven raft of sound on which the self floats above the floodwaters of chaos.”

The writer of incantations in our group has been slowly emerging out of such floodwaters.  Her history includes her mother’s early death, life in an orphanage, a raging, mentally ill stepmother, and a traumatic marriage, not to mention cancer and other health issues.  Her writings have always had this incantatory bent.  In addition, they often have been written in third person, which has created a distance between her own traumatic experiences and the emotions and words on paper.  It has only been in the last several months that she has started to use first person.

I think that for some of the other participants her incantatory pieces were perplexing.  So many repetitions!  Where was it all leading? I didn’t always  know.  Yet, I held fast to the principle that the “self”, the healthy ember at her center, was guiding her process.  And slowly but steadily, she has emerged like a butterfly from her chrysalis–an image she often writes about.  She has lost weight.  She reports more and happier interactions with her family.  Other members of the group remark on the positive changes they see.  She now talks about herself more, about her plans, and even her past.

As facilitators, we don’t always know what participants are working through or how their writing helps them move towards wholeness.  I only recently stumbled on the Gregory Orr quote as I was reading Poetry as Survival and  had a real “ah,hah!”  moment.  This is why I think it is so important to respect each person’s process, to give them the space and the tools to find their own rhythms, rather than to too narrowly define therapeutic goals for them.  Sometimes it is only in retrospect that we are able to understand how their writing sustained them.

 

 

 

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.

An Abundance of Need January 21, 2010

In The Wounded Storyteller, Arthur Frank quotes Nancy Mairs, poet and essayist, as saying that “all persons have abundances and all have lacks….your abundance may fill someone’s lack, which you are moved to fill….”  I remembered this the other night after my first meeting with my winter class at the cancer center.  I had not taught for almost 6 months.  In those months, my life revolved around therapy for my broken back, and it has been less than a month since I shed my body brace and have been able to drive. In the months of rehabilitation I lived a twilight life of sleep and physical therapy. Slowly the more normal rhythm of life claimed me: church on Sundays, lunch with friends, short forays of shopping, longer walks with my dog.  But I still feel fragile and tired. So when I drove to work Tuesday afternoon, I was more aware of that fragility than my competence.

This class was a mixture of women who had taken the class before and several newbies.  That is always a challenge because I need to bring in new material instead of relying on the tried and true, and perhaps more importantly, I need to make sure that the newbies were made  to feel part of a group that has already forged its own dynamics.

So, the first thing I asked of the group was to tell their stories.  They didn’t need to be coaxed.  A new, lovely, quiet lady opened up with a harrowing tale of  family members felled by breast cancer, gene testing, prophylactic mastectomies, and then finding that she had a rare form of cancer in her abdominal lining.  Another woman told  how she rejected implants and instead had flowers tatooed on her flat chest. Each story was like that, trauma upon trauma, terrifying diagnosis and painful treatments, including stories of loneliness and heartbreak.  By the time they were done, I realized I was the only woman at the table with breasts.  The storytelling, though, had brought the women into a deeper connection with each other, an almost palpable feeling of sisterhood.

Yet fragile myself, I felt in danger of being swamped by the sheer concentration of pain.  I was tired and in pain myself, and stressed by my wish to hide those facts. How could I offer anything to counter the pain of these brave women?

One of the first activities we always do is collaging our journals.  It is a relaxing, fun exercise, allowing for easy exchanges in the group.  More importantly, the images we are drawn to often are potent symbols for healing.  While we were collaging, one of the participants turned to me and said, “I noticed you were moving as if you were in pain. May I do some Reiki on you?”  I told her yes, I was in pain, and I would appreciate her help. Her hands on my back radiated warmth and I could feel my muscles relax.  And that was when I looked around the table and realized that I was not the helper, but that we all helped each other. We all had something to offer, even if it was an abundance of need.

One of the things I love about this work is that I can’t be anything else but what I am at that moment.  Perhaps the main competency is simply that: authenticity.  Driving home that evening, I turned off the radio, and allowed myself to savor the pink clouds in the west, the faces of the people walking in the warm evening air, the new ease of my body.  My own fragility no longer seemed like an obstacle to be overcome, but the very thing which I offered to others.

Ruined October 5, 2009

The small yellow vase was a marvel. I spied it years ago at a local arts fair. It could fit into the palm of your hand, its body a fat perfect sphere, its neck slender, impossibly delicate, giving way to disk-like porcelain collar around an opening for just one tiny stem and bud. The glaze over the body was a delicious pale yellow mottled with white–buttery, happy, the wings of a butterfly.

Over the years, the vase has brought me joy in its tiny self-contained perfection. I treasure it. It, I suppose, became something more for me than an object d’art. Through all the years of illness, it stood in my bedroom as a reminder of something–of beauty, fragility, completeness. It was graceful the way a dancer’s line is –effervescent, hardly there, hardly anything, except sometimes, everything.

The other night, I happened to glance at it and see that something was wrong. To my horror ,the collar now had two jagged triangular gaps. By and large, I”m not too attached to things. Pottery and glasses get broken all the time at our house and I usually take them in stride. All the porcelain lamps have been glued and reglued. But somehow, the damage to the little pot got to me. I felt my heart race and I snatched it up and stomped into the TV room where my innocent husband was sprawled in front of Jay Leno. “Did you know about this!?” I hissed. He looked sheepish. He’d been fixing the blind in the bedroom and knocked it off the shelf. “it had been damaged before,” he said, “I couldn’t find the pieces this time.” I was filled with a seething rage; I felt like throwing the vase on the hearth tiles, smashing it into little pieces. I hated it! What good was it if it was broken? The whole beauty of it had been its perfection. It was ruined. Ruined! I couldn’t be put back together and it would never be the same.

I wept myself to sleep in my hospital bed.

The next morning, walking in the neighborhood, my neighbor Patty stopped and asked how I was. I found myself telling her it that it was a long, slow, hard recovery, and then I heard myself say, “I’ll never be the same; my spine will never be straight.” And I felt my eyes fill, my heart pound. Usually, I emphasize the positive–I’m alive, I’m not paralyzed. I’m not especially close to Patty, but for some reason, it came out. She said, “You know, you have to mourn it, there’s no way around it. You’ll go through all those stages of grief. You can’t hurry it up.”

Her words were a gift.

Well, I’m pretty good at fooling myself, but I guess I’ve worn out denial. I’ve tried bargaining–if I do my exercises, work, be exemplary, if I endure the pain, maybe I can preserve the illusion that I’ll be good as new someday, maybe I won’t have to mourn my losses: my strong back that I always relied on, my waistline, just the wonder of a body that despite CFIDS, despite asthma, would ride a bike, swim, garden,do yoga. All without too much consideration. I will heal, but I’ll never be the same, and I will probably never be pain free.

Geovanna, the woman who helps me with the house and with whom over the years, I’ve shared all the woes and joys of a woman’s heart in a motley but thoroughly lucid Spanglish, came up to me a few days ago holding the vase and two small pieces of white porcelain. “I know you love this,” she said, “maybe Mr. Todd can fix it for you.” She handed them to me, giving me a quick hug. Mr. Todd fixed it and put it on the shelf. You have to look for the cracks. I am very glad I didn’t smash it into pieces.