I once watched a TV segment about a creative writing workshop for people with Alzheimer’s disease. A woman was repeating the words “fish sky” as she tried to conjure up “mackerel sky.” It is still considered poetry when it is such slight slippage, I thought then, but what happens when malapropism creates larger swerves? What happens when consciousness lives beyond metaphor, and is no longer “like” our concrete world? The woman on the show would progressively decline.
My beloved Grandmother died of Alzheimer’s disease this February, and I have been losing my cognitive acuity with alarming speed the past couple of years due to my worsening health. It’s the last in a long line of robberies by an illness that makes brains look on SPECT scans like those of AIDS dementia patients. I have written no real creative work since almost dying a couple of years ago (this short piece will take a lot out of me)—as I have been too brain-impaired to rub together words in the magical way that used to happen spontaneously. I’m trying to prevent more dissolution.
I keep Grandma’s picture on my desk, and one day not long ago I looked at it and realized that I could not be upset with myself for not writing. It is a devastating drain to go down, losing one’s cognitive skills (not to mention being largely bedbound and physically disabled), but Grandma never lost her value as a person. Despite the fact that I was raised on Protestant work ethic, Grandma—the best Christian I have ever known—didn’t harp on anyone who tried her best. Where did I get my self-criticism? She would have made me a pecan pie.
Coming out of a period of almost dying—dying horribly and essentially mute (I could not generally speak out loud for over seven months as it winded me so terribly: now my short-term memory, word-finding ability and other brain skills are shot), I’m trying to learn how to be direct with my words—to just say to someone, “I need help.” Shouldn’t it make me more of a writer to rely on such simplicity—to realize, as physician-poet William Carlos Williams wrote, that “so much depends upon a red wheelbarrow”? Susan Sontag famously stated that “illness is not a metaphor,” but this stark realism is hard to swallow. Anatole Broyard (Intoxicated by My Illness) insisted on physicality as metaphor: “He died not of cancer exactly, but of pneumonia, as if his lungs had filled with trapped speech and he had drowned in it.” Aren’t these both real? The left brain’s version of death (the one in which I’m reborn as a fungus) has to coexist with the right brain’s version (a more creative tale, the one I hope for).
The way I was dying was between these two poles, and in fact swung wildly between them at times, from temporal lobe spirituality to acute awareness of my lack of time. It was awful for me to watch even the muscles in my hands recede and know that my words, which I used to wield like an ice pick to drag myself over impassable terrain, were missing. Just trying to utter the word “fight” sent me gasping and heaving for breath. I was truly drowning in trapped speech: a writer’s worst nightmare. My sister said glibly, “You’ll write about this when it’s over,” but I knew I would be lucky to just survive. With my illness, brain function is measured in units of cellular energy, and starved mitochondria can barely mobilize the organs, let alone light up the brain: the worse the illness gets, the more this becomes true.
Already intensely weakened from myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), I had acquired three secondary infections over three years—Lyme, bartonella, and babesia duncani—one from a dog bite (the stray I picked up was later found dead), two from a tick bite. Just as antimicrobial therapies were beginning to pull me out of a downward spiral, I was caught in a terrible Ice Storm in December 2008 that became legendary in the Hilltowns of Western Massachusetts. I also had multiple chemical sensitivities (MCS) that were so severe they made the hospital stay I endured post-Ice Storm fairly certain to cause me physical injury. It was a series of impossibly unlucky events in the context of multiple maligned illnesses.
After a four and a half day hospital admission, I entered a period so dark and terrifying I don’t know how to describe it. Something was horribly wrong with me (my EKGs done by paramedics and plummeting blood pressure unrelieved by intravenous saline strongly suggested septic shock, but I could not return to the hospital due to MCS), and I was plunging into respiratory failure. I spent over seven months trapped in the corner of my bedroom and the adjoining bath, too weak to speak out loud, crawl across the room, or reach for things at the foot of my bed. My blood pressure dropped from the slightest movement. When at one point I mustered the strength to reach and grab some books from my bedside, I re-read a poem by Tory Dent (in HIV, Mon Amour) about her time in a TB ward. As horrible as it was, her quarantine didn’t even come close to the level of isolation I endured as I almost died, yet many of her stark words rang true: “The days succeeded then in a condensed formula of alternate/darkness and light that make up twenty-four hours.”
I could not tolerate any sensory stimulation as I was dying—the global hyperacusis I was experiencing from my raging brain infection had made vibrations, light, TV, radio, and people moving through my room unbearable. This torture was incredibly bizarre: one time someone walked on the ground outside of my house on five acres, and it seemed to shake my bed on the second floor as if I was in an earthquake. Because the presence of a person in my room would induce muscle fasciculations, seizures, and extreme crashes, I was dying in solitary confinement conditions (the neuropathologist for ME/CFS patient Sophia Mirza found damage to 75 percent of the sensory nerves in her spinal cord, after she died with similar hypersensitivity symptoms). I crawled to the tiny bathroom and spent the day there, so I could have the strength to use the toilet and avoid the stimulation of my untrained, part-time aides dropping food beside my bed. I was completely alone almost every day for 24 hours a day, unmoving. For about ten of those hours each day, I was lying between a toilet and a wall. People in solitary can pace, or shout through the bars, but I could not even do that. The bathroom was filthy.
It was terrible to not be able to present a public defense, to let people know how I was dying. My family began to act like I was crazy—to the point that one family member even called my dying a phobia, as if I had conjured up such acute death-fright that I had just decided to lie in a corner and not bathe for much of a year.
Metaphor, visions of an afterlife, escapist fantasies, even phobias were generally inaccessible. I was unwashed skin turned to thick pulp, braided hair that never got washed, underwear that rarely got changed, a body so hollowed out I already had the sensation I was rotting and dripping down into the bed, like the fluids that would come after me. Mostly, I was a person fixated on strategy: how could I get out of this impossible situation and save my own life? All day long, I repeated ridiculous pop songs in my head that had inspirational messages, from Britney Spears (“I’m stronger than yesterday”) to Olivia Newton John (“Have to believe we are magic”). I tried to believe I was magic, stronger. It had come down to that.
I kept Grandma’s picture on the pillow beside me—my favorite one, taken in her eighties, with Grandma raising her hands in a victory salute with her Chicago Bulls t-shirt on—because my family had abandoned me to die there. Grandma had outlived twelve siblings, including two who died quickly from spinal meningitis while the others cowered in quarantine. Grandma knew life and death were a lottery, and that a person could only put her best game face on.
It was because of language that all of this was happening to me: decades of disinformation from the CDC, a belittling misnomer given to my devastating disease, enough bad press to sway even astute people. Reductionistic language had whittled me to wordless bones.
My literary efforts to articulate the horrors of severe ME/CFS in the years before did so little to erase the bigotry around my illness that, in the hospital, an infectious disease doctor had come into my room and just started yelling at me before I could even speak. He was outraged I was taking antibiotics for my secondary infections. “People with chronic fatigue,” he spat, “do not need antibiotics!” He barely glanced at my chart: the words were enough, like so many epithets yelled at psych patients, people with AIDS, and lepers in so many years before. He was outraged that anyone had taken my symptoms seriously.
I felt like a failed writer: my words had not won him, or other doctors, over. Even worse, when I typed that doctor’s name into a search engine after he left my room, I learned that he had once been an actor. A mediocre soliloquist had pounded this writer into a mute bed with damning diagnostic language—it was almost a bad joke.
But this is why I had become a poet in the first place. This is why Anna Akhmatova told the story of standing outside of a Leningrad prison in 1957:
“One day someone thought he recognized me. Then, a woman with bluish lips who was behind me and to whom my name meant nothing, came out of the torpor to which we were all accustomed and said, softly (for we spoke only in whispers), ‘-And that, could you describe that?’ And I said, ‘Yes, I can.’ And then a sort of smile slid across what had been her face.” (Poem Without a Hero and Selected Poems).
Of course someone must describe that. But how? Even breath, I have realized, is a call and response, but who is listening when I’m not writing things down?
Well, nothing in nature becomes nothing, wrote a friend of mine with Aspberger’s when I was dying and soliciting opinions about the afterlife. My sick friend sent me a link the other day about how cremated human ashes can now be turned into bullets (apparently one of many creative options for cremains!). She had a genius idea that all tyrannized people could be turned into bullets after death and then used in the next revolution to fight their oppressors. I love that my pacifist friends, pushed by illness, come up with such ideas. This is war, texted the partner of another sick friend the other day. We’re at war.
It is okay to be more ash-bullet than pen now. It feels real. It may be some time before I get my eloquence back, or I may never recover enough to write the way I once did. It’s okay. As Alzheimer’s plaques crowded the astrocytes of Grandma’s brain, I could still feel her life force from here. I may just stay this tempered metal rage. If I do write again, the first thing I’ll describe is the ventilator that saved me, how it pushed air back into my almost-dead flesh. Its comforting mechanical rhythm was not like a poem’s meter at all, but more like Grandma sewing at her old Singer with her characteristic poise, purposeful, preparing for the next day, doing what had to get done so we could wake up, get dressed, and just go on.
Peggy Munson is the author of the poetry collection Pathogenesis, described by Gillian Conoley as, “Possessed of a stylistic brilliance and extraordinary humanism.” Peggy is also the editor of the book Stricken: Voices from the Hidden Epidemic of Chronic Fatigue Syndrome, and author of the award-winning novel, Origami Striptease. She blogs about health and environmental issues at: peggymunson.blogspot.com and many of her essays can be found at: www.planetthrive.com. Her website is: www.peggymunson.com.