Losing another M.E (CFS) Patient to Suicide

The M.E. patient group lost a very beloved and important m.e. patient who had been ill with this disease for decades. Sadly he committed suicide. I did not have the privilege to know him because I'm new to this disease, but his death has rocked the M.E.(CFS) community. His name was Thomas Hennessy Jr. He founded the M.E. Awareness Day on May 12th. I have spent this week learning about him and understanding all that he did. Many of my fellow m.e. friends are shocked, in pain, and mourning about his loss.

I read two long blogs in the middle of the night about Thomas that brought me to tears not only for his family but frankly for me too.

People with Myalgic Encephalomyelitis suffer horribly and we suffer invisibly and we hide how bad the disease is (at times) to the outside world. I certainly do. I save my deep pain and deep suffering for the private chat rooms where I know I will be understood. Suicides are high for people with this horrible disease.

But tonight I'm coming out of the closet to tell you that this disease took everything from me: my career, my friends, my ability to exercise, my mind due to cognitive impairment. It is brutal and there have been days when I have looked at my husband and told him I understand why the suicide rate is so high.

We have to have outside funding, we have to have solutions, we have to have the important government funding, we have to have trained literate M.E. doctors. This disease is killing people. We need help; we can't do it alone. We can't do this without people who are not sick. This disease can bring down anybody at anytime.

Rest in Peace Thomas. Please take the time to watch this. Please help us.  Click on the words The Blue Ribbon:Sneak Peek.

The Blue Ribbon: Sneak Peek

youtu.be

Opportunity To Grieve

     My friend and teacher, Sean Murphy told me in a long and valuable email that chronic illness is a deep spiritual calling--that he has heard other people with Myalgic Encephalomyelitis also known as Systemic Exertion Intolerance Disease say it was the best thing to happen to them, and as a fellow me/seids patient, he didn't quite believe them. I wrote back and told him I didn't believe them either, and that, frankly, I was furious and still grieving that I'd been felled by this disease, cut down in the middle of my fifties by a wayward virus or biotoin. I was still in deep pain at the time I wrote him. Still angry and frustrated that after thirty years of careful attention to my hygiene around my students (who year after year would come to school sick), a possible virus/bio-toxin got me anyway.
     Who knows where I picked it up. I read that it takes five to six weeks for mono (which is caused by a virus) to strike one down. Five or six weeks earlier, I'd been in Taos, New Mexico on a silent writing retreat. Did I contract it on the airplane? In the airport restroom? At the food market the day I arrived for the workshop? From the food at the retreat? From my roommate who has a child?  It matters not at all.
     One day while surfing online, I saw a photograph of a young woman who'd contracted a resistant strain of tuberculosis. The photo horrified me: she looked emaciated with tubes that snaked into her lungs. The article accompanying the photo explained that this resistant form of TB is running rampant in India where the population can get antibiotics easily. The article went on to state that resistant bacterial and viral diseases are becoming a global problem. They are rapidly spreading around the world because of the ease of travel.
     It scared me and the thought of that made me want to huddle in my house and never go anywhere, but I can't live like that. I've stared down too many fears already--fighting my way out of semi-agoraphobia in the late 80's and early 90's after I was randomly attacked. I refuse to let fear rule my life.
     My husband Bob emphasized that perhaps we couldn't travel the way I'd planned but that we could still see the world, just not as much--that we could still go to Paris, create a home base and just see fewer sights with down time for me in between. Slowly once again I came to realize that my life wasn't over, but I'd have to learn to live inside this illness. I might have to obtain equipment: a cane, a wheel chair, anything to help me navigate through the world as a disabled traveler. Chronic is chronic, but it isn't death.
     All those years of training: meditating, slow walking, and writing practice by Natalie paid off. At my last retreat I told her (in a private moment,) she'd taught me well. She smiled and nodded. I'm fast by nature; learning how to live this way has been like being forced to learn how to walk on the ceiling; it's like having to transform from a gazelle into a slow rambling sea turtle.
     How could I find the serenity I'd lost when I fell ill back in 2009? When I lost my career, my social life, my mobility? By adapting and staying in the present moment. Now, most days when the weather is good, I enjoy sitting in the backyard, under the patio ceiling fan, with my two dogs Petey and Penny Lane as company. Most days while my husband works, I find myself content to read, write, and sip tea. Slowly, day by day, I am learning to sit back, relax, and let the great world spin.
   

The Ground of Being

I beg to urge you everyone:

Life and Death are a Great Matter

Awaken, awaken, awaken

Time passes quickly

Do not waste this precious life

~Evening chant, written on the wooden han

~Natalie Goldberg

  The True Secret of Writing: Connecting Life with Language.

Natalie Goldberg's Rules for Writing Practice from Wild Mind: Living the Writer's Life

"1. Keep your hand moving.
 2. Lose control. Say what you want to say. Let it rip).
 3. Be specific. Not car, but Cadillac).
 4. Don't think. . .  [stay with first thought, write down whatever comes into your head first].
 5. Don't worry about punctuation, grammar, or spelling.
 6. You are free to write the worst junk in America.
 7. Go for the jugular. If something scary comes up, go for it."

~Natalie Goldberg's Wild Mind: Living the Writer's Life pgs 1-5

Remember:

Time your writing with a timer. Ten minutes is a good starting point. Later you can play with length of time. If you don't time it, you will stall out and stop and end up staring at the wall.  Write continuously until the bell rings. If you run out of things to say, write I don't know what to write. Many times your brain will kick back in and you will grab a thread of a thought and be back on track. It's ok to wander. You are not writing mini essays.  If you start out talking about a memory of your father and end up writing about the awful time you had on your last vacation that's fine.  Follow your mind. Write without planning or thinking.  After teaching this practice for twenty years, I have found that as you go down the list, the harder the rules become. They sound deceptively simple but actually they are complex and challenge writers to be brave.  The best writing is writing that shows the author's vulnerability.

Keep your hand moving.

Read your work aloud (even to yourself).

If you are writing with another writer, do not comment.

Writing practice is practice: not good, not bad.

Silence and listening is the other side of writing.

Just read; post; read; post.

As hard as it is, please refrain from commenting other than thank you for sharing. I know it sounds kind of lame, but it creates a sense of safety.  We have been so conditioned to always be right, perfect, and error free in our work, that it takes time to get it, it's ok to write less then stellar writing. Think of this as practice because that is exactly what it is.  It's like a musician or vocalist practicing scales.  There is no crossing our or heavy editing.  Lightly editing is ok, for example fixing spelling errors or ironing out a sentence that seems jumbled.  I hand write all my writing practices. Something about connecting your arm to your heart deepens the writing, but writing on the computer is ok too. Just remember the delete button is dangerous.  I keep a notebook and write on the front page only in pen. I never destroy my notebooks. I have notebooks that go all the way back to the early 1980s.  After you fill a notebook up ( and please remember to date it with the time) go back through and read it. You will be delighted and amazed at some of your entries.  There is a gap between what we believe we wrote and what we really wrote.  And letting the work cool off, enables you to close that gap.  Most folks think they are writing crap when in reality they are writing really powerful work.  That critic who tells you, you suck is called monkey mind and it resides in all of us.  It's mechanical contraption that is built in. We can't get rid of it.  A great exercise is to let it have a voice once in a while.  Mine says, no one cares, you are too old to make it in the publishing world, you missed your chance, you were never that good in the first place, and you suck.  I write it out and then tell my monkey mind to get off my back and go sit in the corner.  I have learned that developing a sweetheart voice to counter act the monkey mind is a great way to go.  Mine says, Come on sweetheart you can do this. You have interesting and relevant stories to tell, remember all the women who have come up to you over the years telling you they need your stories of healing.  Keep going.  Don't think about the whole. Just tell the next little part of your story.  Be patient.  Don't quit. You can do this.

I hope this helps.

Writing Practice: What do I carry?

     I carry a lot of things: my mother's piano music, possibly a load of viruses-how many of those I don't know.  I've been researching enteroviruses, those tricky devils that hide not in the blood but in the tissue of folks like me who have me/cfs.  Lately, I've been thinking about what books I carry inside me: Fahrenheit 451 by Ray Bradbury, The Bell Jar by Sylvia Plath, Housekeeping by Marilynne Robinson, Wild Mind by Natalie Goldberg, and my own book, a memoir that is taking its good old time to appear. I also carry around poems: "The Love Song of J. Alfred Prufrock" by T.S. Eliot, "For the Sleepwalkers" by Edward Hirsch, "Daddy" by Sylvia Plath and countless others.
     I stayed up all night the other night and read Natalie Goldberg's new book The True Secret of Writing and instantly I was carried back to the Mable Dodge Luhan house, my home away from home, as Goldberg describes how she runs her week long silent retreats.  I closed my eyes and revisited the Georgia O'Keeffe room, Spud's room, and Tony's room with the famous bathroom, the windows painted by D.H. Lawrence.  In my mind I slow walked the cobble stone courtyard past the birdhouses and the petroglyph that sits under the  massive cottonwood and then behind the main house, the sacred Taos mountain in the background, its bald peak visible from almost every where in town.

     A close friend of mine drove through Taos this winter heading from Houston to Colorado for his own silent week long retreat on a ranch owned by the Catholic church. He said the retreat was powerful but also annoying. I wondered what he meant by that. Personally, I love the silence. It's a few days a year where I can just shut up and write. A time for just me, my thoughts, my notebook, and my pen.  I spend most of my time at Mable's outside. Even at night after the other writers have gone to bed, I'll walk the courtyard or just sit in silence under the gazebo on the wooden swing and listen to the crickets while I sip a cup of chai tea. I'm not sure why I love the high desert so much, I  just do. It's a place that has been breaking me open spiritually and creatively since I began studying with Natalie in 1999.  The days grow large in that week--time expands.  At the end, I am never ready to leave, but then everyday life pulls me back down off the mountain back to Houston, the thick humid air sticking to me like wet wool. And every year I come home always carrying gratitude, always changed.

Writing Practice: Cognitive Impairment (brain fog)

     How do I describe cognitive impairment caused by M.E. to someone who doesn't have it? When it strikes I can't process language.  Sentences don't stick, memory malfunctions.  I hear the words coming out of someone's mouth, but they don't land in my mind. The words just glide around in my brain and I lose track of the sentences, the thread of the conversation.   And worse than that I lose vocabulary, simple words.  Last July the fog had descended while I was on a mentor telephone call with three of my Write To The Finish classmates and my teachers Sean Murphy and Tania Casselle. I was trying to tell Sean and Tania which week in August I would be in Taos, New Mexico for a silent writing retreat lead by Natalie Goldberg.  I was trying to set up a plan so that my husband and I could meet them for coffee or dinner the week after the retreat.  We were on the call for over an hour and I was tired. I could feel myself heading toward a me/cfs crash. I couldn't come up with the word airplane, so I stumbled around and said, "you know, that thing that you fly on to get somewhere."  I laughed because Sean knows brain fog too; he's been living with me/cfs for twenty some odd years. He and Tania understood; thank God.  
     Imagine a writer suddenly unable to use the tools of her craft.  When I was first diagnosed with this disorder, I panicked.  I thought I'd lost my mind forever, that I'd never be able to finish my book, that I'd never pen another poem, that my life as a writer was over.  On bad days when I'm in a crash and foggy, I can't follow a tv show, I can't follow a scene in a book I'm reading, I can't follow conversations, nor can I find the most basic words.    
     I can catch a glimpse of what those who suffer from dementia must feel like, what stroke survivors must go through. It reminds me of the book I read years back titled My Stroke of Insight by Jill Bolt Taylor, a writer who suffered a massive stroke and was by profession a brain anatomist. I remember reading her memoir before what I now call "the great crash of 2009." I admired her courage; how she had to begin at zero: moving from infant-hood back to adult-hood with the aid of a team therapists and her beloved mother.
     I remember also not long ago, watching a documentary about Ram Dass, the author of Be Here Now, who also suffered a stroke and now lives in Hawaii. In one scene in the film, he's sitting in a room with his speech therapist; he tells her that many times he knows the word he wants, but he can't access it, that it's almost like he can see the image of the word in a closet. She coaches him, teaching him to hold up his hand, a way to signal to his listeners to wait, to not finish his sentences for him, to not fill in the blanks. He's retraining his brain--firing up new pathways. And as I watched him struggle that day while being filmed, I understood the frustration.
     My husband's ninety-three year old mother suffers from dementia.  When I first met her in her apartment on Thanksgiving day in 2010, she asked me to please forgive her, that she'd grown stupid in her old age. I smiled at her and said, "You're not stupid--you just forget things. I forget things too, so I guess we'll be stupid together."  She liked that and warmed up to me immediately. The good news is that if I rest, the fog lifts just like it does on those chilly mornings when the sunrise finally burns it off and cautious drivers can see the roads and landscape ahead of them. And so I wait patiently, knowing that eventually the words will slowly, faintly appear inside that foggy landscape of my mind, and gradually once again I will be clear.   

A short writing practice: Night falls on the edge of Taos Pueblo, August 14, 2012

     Just now: the crickets are chirping, the kitchen staff are banging dishes around cleaning up after a delicious dinner, the class and Natalie (Goldberg) have gone to slow walk out to the battered cross made famous by the painter Georgia O'Keeffe, and for the first time since I began coming here in 1999, I've stayed behind, mindful that my pace needs to be slow and steady, mindful that if I crash,  my mind won't work, that I'll lose language, a commodity as precious as rain here in Taos, land of high desert.  The wind is blowing steadily through the cottonwoods, a friendly low roar to keep me company, as I sit on the bench outside the zendo patiently waiting for my classmates to return.  The Tibetan prayer flags are waving as if to say hello--squares of yellow, green, red, white, blue.  The sun is going down, and the sky is pale blue, the low clouds grey--spread wide across the horizon.  A motorcycle rumbles in the distance.  Yesterday, I flipped through a book of photos called The Monks Return To Mable's.  It was winter when they were here, their robes a flash of orange against the snow.  I studied the stunningly beautiful mandala they built using piles of colored sand.
     I'm glad I warned my new husband not to expect phone calls from me once the silence began on Tuesday morning, happy that he trusts I'll call only if I need to.  I can't wait to show him just where I've been coming all these years.  I don't know if he will get why I love this place so much, but it doesn't matter.  He knows that writing has held my heart since I was fourteen--the poems rising up out of me like bubbles when I began journaling all those decades ago in that Ohio bedroom at the top of the stairs at my grandmother's house, putting pen to paper to keep myself sane as my mother's core family died around me--first my grandfather to old age, then my aunt to wet brain from alcohol, then my grandmother from stroke--all gone, leaving no one in the house but my anxious, grieving mother, my alcoholic uncle, and me, a seventeen year old girl whose only solace was music, books, and the pen, that magical tool that would take me on amazing journeys of my mind.
     The darkness has settled, the staff all departed, the drumming and singing echo from Taos Pueblo. I don't know exactly how long I've been writing out here in the chilly night air, but like my black shawl circling my shoulders, I'm wrapped in deep gratitude that I felt well enough to come.  Ahh, the crunch of tires on gravel, small beams of light pierce the black. They're back.  Welcome home, I've been waiting.