Thoughts on Writing, Not-Writing, Illness and Painting

Only after I stopped writing did I begin thinking about what compelled me to write in the first place. 

For the last seven years I stopped writing almost entirely.  

My first memory of thinking about writing is as vivid as my hand that types this post.  It is of a girl who is seven years old.  That girl is me, yet such a kernel, such a ghost-like nimbus of a sensibility, hardly able to catch a thought before it floated away.    

Yet some thoughts sank deep within the me who is me now, germinated, fully flowered into this memory:

 I was on a blanket in the front yard of 3254 Centenary, yards from the sidewalk, almost a mile away, she'd remember, from the ladies in their hats and heels, gripping their shiny purses, getting the purses at the right angle near their elbows, pulling their gloves up and their sleeves down.  

This was Sunday, the day they intruded on my privacy as well as on what I considered my stomping grounds, their long paved driveway, their sunken garden ivy-covered,  shaded by massive oaks that dripped moss.

The only thing I knew about the people who attended this church was that THEY DIDN'T BELIEVE IN DOCTORS.  

They were Christian Scientists. The church was the Christian Scientist church.

My stuffed animals, trundled there in my small red wagon, were circled around me.  I was watching as the churchgoers walked past me with a sense of purpose, and for some reason I still can't figure out, they never waved or nodded at me. It was as if I were invisible.  I ventured little waves at someone now and again, yet there was nothing in return.  

I wondered how they could be ALIVE.  I had already been saved by doctors several times.  I don't know who told me they didn't believe in going to doctors but I knew it.  I think that once, after my persistent questioning, my mother explained that "they" depended on their "faith" to heal them.  

 The memory I have seems to be one of my oldest memories.   On that Sunday morning I thought:  I am going to write a book.    

As anyone who has read my other blog posts knows by now, I have no sense of direction.  Geographic direction.  But when I think about myself on that blanket, conjuring my future, I see that I have found my way.   Again.

My major obstacles, detours, hurdles have been, for the most part, health related--getting myself out of the funk of a bout of illness.  When my body has broken down--which started with a mysterious fever when I was less than two that left my muscles limp, my eyes crossed.  Then there was asthma, pneumonia, a blinding headache, perhaps meningitis, mono, endometriosis, thyroid, pituitary, my endocrine system blown apart.  After these dramatic sieges of illness, I was always left shaky, weak and chastened.  I understood early on that I was at the mercy of my own frailty.  

Fragile, sickly, failure-to-thrive.  These are the adjectives I had to outrun, outlive, and I did.

Then in my middle age, the body turned on me once again, and with a vengeance. Seven years ago I was diagnosed with MS.


Six weeks ago I was interviewed for four hours about my lifetime of medical issues. Finally, after the doctor turned off the recorder, I looked out his window and was close to breaking down into "a crying jag." (my mother's term for my sobs.)  There was a sudden time-lapse, or a collapsing of time that happened in that second--and I realized my life's two major narratives are writing and sickness.

As I looked out the window and into my own memory,  I said more to myself than to the doctor, "I hate to go over this history.  I have felt like shit my whole life, and I don't really like to think about it."

The doctor looked astonished. 

I was equally perplexed that he hadn't heard this in all that I'd told him.  

He said, "You never said that!" 

He then asked, "As a teenager? "  

Yes, I said, the teenage years were the worst.   I told him that my mother would have to wake me from the couch, where I'd gone to directly from arriving from school.  Every day after school I'd fall into such a deep sleep that being awakened seemed like torture; I'd be angry, only wanting to sleep and sleep and sleep.  

"But those are the most vital, the most energetic and healthy years of a human!" the doctor said. 

Well, I said, I felt awful.  

Yet I wrote poems; the poems were published in the school paper.  I wrote stories: my teacher read one of my stories aloud.  From the outside looking in, my friends said then and would say now that I had energy, that I was busy and present and made myself known to the world.  But that was the public world and very separate from the private world of sickness.  


 I've had a bad couple of weeks.  First a spinal tap that made me dizzy; I felt strange, as if my body had to readjust after being punctured and drained as if I were a Frankenstein experiment, four vials of spinal fluid to be sent off to BIOGEN laboratories in California.  Lyme?  Lingering meningitis?  Or "just" MS? 

Then I caught a cold. A "common" cold, it's called, the viruses that spark all the MS symptoms.  After a week, I was listless in the old familiar way.  Seemingly defeated by the uncommon cold, I sat on the couch and closed my eyes and felt hopeless and helpless.  Within and out of the darkness, I struggled to break the spell, to shake the sick self into health.  I reached for the computer and began to write this post.

 I realized when in search of a topic:   It has always been like this.  I'm going under and then there is the blank page, the compulsion to break out of my bubble of sick solitude and write; it has to be a desire to connect with others, the need to have life breathed back into me by the prospect of writing something that pulls someone toward me, someone who stops and sees and savors.  I throw out my sentences, they arrange themselves into paragraphs; I begin to warm to thaw to be engaged by being engaging.    

The years since my diagnosis I think of as the Mute Years, seven years of not sure what to say, or to whom to say it or when and where NOT to say it, much less write about it. MS became a meta-story that swallowed me whole and plucked my words from my brain and threw them away.

When my "gait" changed, the rhythm with which I'd walked in the world, I also discovered  I could no longer string together fluid, graceful sentences.  I could not make sense.  Of any of it.  

I would come home from doctor appointments where I'd been inarticulate, and I'd paint, paint wildly and with no concern for my clothes or my floors or the walls.  Paint splashed and spattered onto every surface. and there was no coherence to the end result.  Seven years ago I signed up for a course at Kripalu, picking anything that didn't have to  do with writing one's feelings or  moving one's body.  The class was a painting class.  What became my lifeline, the introduction to painting.  

If I were writing about this person as if she were not me, I'd speculate that she was beginning at the beginning; she'd been busted back to kindergarten and must fingerpaint and sometime along the line she will paint herself toward something recognizable to herself, to others.  Not a bird or a hat or a feather.  But a plea, a confession, a cry, a scream, and a raucous, bawdy laugh.  

 A developmental stage, pre-verbal, her state of being a person with a "progressive degenerative neurological disease" too frightening to talk about just yet, much less write about.

 I painted obsessively for five years, painted until I got "better" at painting and at being a person with MS.  I painted until friends urged me to sign the paintings.  I hesitated.  After a year of this, I signed my name in tiny letters on the far right corners of my paintings.  Then I continued painting until some paintings were sold.  Then I was asked, "What is this painting called?"  

These steps were small steps back to writing.  The paintings were linked to, were an extension to WORDS, and to faith in my ability to remember how to use them. Each painting both was a story in and of itself and had a story.  Just like where I'd once been and from where I thought I'd fled.  I was the chaos before the coherence, but the meaning and the message rose up to greet me.  

Then there was an art opening.  I hung a painting called Faulkner's Girl that has  photos of me in the yard of 3254 Centenary.  I am embedded deep inside and tangled brush and trees and fences surround me, hold me until years later when I discover Faulkner, when I write of Faulkner, when I stop writing of Faulkner, and return to her, paint her into being, then name her.  I'm told I must write an artist's statement.  I write my "statement" and then I write more and more and more.  

pink places.jpg

The young woman who I hired to help me with my life, handed me my laptop and said, Look. This is YOUR blog.  You can just begin writing here.  The space was blank, the space inviting; I was invited to fill this space, the space that had been empty for seven years.  

I imagine the notes exchanged with Boo Radley.   

I can't stop putting these notes-- tucked inside this website-- up for you to read.  

I imagine you out there.  I imagine I am visible to you.  I imagine I wave.  I imagine that you lift your hand and wave  back.