I read somewhere once that one doesn't add many new words to one's vocabulary after the age of twenty-five. There was a chart. Think of it this way, it's as if you still had all the Legos, or all the plastic cowboys, Indians and horses from your childhood and that was it--you played with them endlessly, not venturing out to get new toys. That's how words work when you are in early adulthood, evidently, unless you entered a new profession.
Every profession has its secret language, filled with code words, acronyms, slang, an easy shorthand you share with the natives of your planet profession.
In academia there is one form of a secret insiders' language: the natives will reference characters, scenes, settings, plots from books they've read to explain their lives. There is always a correlative to call upon to illuminate or illustrate your own life that's contained in a book, a play, a poem. So if you had a really horrendous fight with your father: King Lear could be used to compare. Or mother from hell? Medea. If you got lost, crazy things happened that made no sense: a reference to Beckett. My southern background? Faulknerian.
When I stepped outside the circle of "the natives" in academia, I had to drop the code words, the referents to the Universe of Books. Everyone had not read all of these books. Of course they had not. This was my CAREER. Others inhabited their own planets of CAREERS and they had their words. Doctors. Lawyers. Engineers. Architects. Artists.
And if you get a disease. You get a new vocabulary.
Exacerbations; relapses; flare: lesions, all words completely new to me until seven years ago.
But there was one word my two worlds shared: MYSTERY.
Many of us with doctorates in literature have a dirty little secret: some of us devour mystery novels as if they are chocolates.
MS is a mystery. "They" really don't know a damn thing about it. This was a real stunner. A real downer. People outside of this MS universe think that "NOW" it can be so controlled with drugs that it isn't even that BAD.
I had people say to me when I was first diagnosed: Well, you're lucky--now it is so treatable.
It is not. "They" don’t know what causes it. What triggers it. Why some drugs help one person and not the other. There is no definitive test to detect it.
Flannery O’Connor wrote that “a story is good when you continue to see more in it, and when it continues to escape you.” This, she wrote, is the crucial element to good stories: mystery.
My life has certainly continued to escape me, my desire to catch it on the fly, contain it. This disease has slowed me down, sent me in a different direction than I'd ever imagined, and probably is the reason I took to painting, a default mode of mobility.
In 2008, I had a "guided” lumbar puncture (proper name for a spinal tap) performed by three residents at the Mayo Clinic. I was on my stomach, awake, and one of the residents pointed to a screen right above my head where I could watch him thread the needle into the base of my spine. All those years of yoga, I thought, when the teachers had told us to envision our spines, and here I was actually viewing my spine, as someone extracted its mysterious innards, the fluid that my mind had once tried to push up and down while we all sat in a room, eyes closed, legs crossed, hands in prayer position.
I heard one resident tell the other that he’d gotten a vial full of spinal fluid.
I asked to see it.
No one had ever asked before to see the extracted fluid.
I had tried so hard to keep some control of my own insides. This was not my soul. But this was a piece of my insides. Why should all the doctors be privy to what was so private?
Year after year of MRI's, blood draws, little cups of my bright yellow urine handed over to some tech-----I never realized how much my roots in Louisiana had taught me to be wary of handing over bits and pieces of yourself. Some damn person could cast a spell. You are instructed by shamans, by those who know such things--about voodoo, gris-gris, juju--not to leave your fingernail parings just layng around. I so took this for granted, that I automatically gather my parings, am careful no clump of hair is left in a motel sink for anyone to scoop up and use. Use to catch my soul, fuck with me.
Over the years of having MS, I've left all sorts of residue to be sorted out, to be "read," the results spit out of a printer, broken down into numbers, digits.
When I was twenty, I took a job in the agriculture department of LSU, where they studied chickens and cows. The grad students I worked for fed chickens a certain diet and when a chicken reached maturity, it was killed and then the whole damn chicken was put through some kind of grinder and every element of the chicken was documented--then pored over. Even the beak went in to the mix.
What I was to read over each day looked much like what you read on the back of some food product when you want to see the ingredients.
When someone--always a stranger--pulls the fluid from your spine, the strangers in the lab take what you might have tried to move with your mind-- in meditation, in yoga practice-- up and down your spine, they take that golden essence of you and parse it into its molecular structure.
My spinal fluid contained broken down protein. This showed that pieces of my nerve sheath had been stripped and now floated like the trash we leave in space; it was the compost of my body, the evidence of my illness, flushed into the central center of me, just as if my central nervous system is a toilet. Well, maybe a filter.
Evidence. Proof. These doctors and biochemists are the detectives. But the mystery of MS remains just that, a mystery.
Therefore, I am a mystery. I am a mystery to me.
You see how crushing that is? Especially to someone who spent years in psychoanalysis in order to bring what was unconscious to the forefront, into consciousness. I'd worked hard to take control of the unseen, the powerful forces that moved me as if I were a puppet, a puppet thrown into the wild Mississippi River, a river that has currents that flow in all ways at once. That river of me had been mastered; I'd taken back control of myself from my Caliban of an unconscious. I was no longer at the complete mercy of unseen forces.
Until the time I began to notice a limp in my right leg. Who had pulled the plug? Disconnected my leg from my brain?
Now I see the mystery of me goes deeper and deeper and deeper than I'd ever imagined. There is a secret inside me and my body refuses to share it with me.
I'm in perpetual conflict within myself. Such internal war is difficult for friends to see, hard for me to explain, leaving me often at a loss for words. Speechless, in the universe of illness.