Sometime in 2006, I got an idea for a novel. A neighbor of mine in New Hampshire, a violist/violinist, told me a story about going to visit an old girlfriend who had multiple sclerosis. They had had a terrible breakup two decades earlier, and been out of touch for a long time, but when he heard she was sick, he went to see her.
In my novel, Daniel, a Caucasian concert violinist, falls in love with Alma, a Korean American cellist. He almost marries her, but, because she catches him cheating, their relationship ends, and, afterwards, he exclusively dates Asian women, in a vain attempt to recreate his first love. The plot of The Fetishist involves kidnapping, attempted murder by blowfish, and other high jinks, and culminates in Daniel and Alma’s reunion.
Completely healthy, without firsthand knowledge of MS, or any serious illness, really, I tried to imagine my character’s experience of her disease. I did a lot of research, of course, on the internet, and also by interview. A lot of writers I know get bogged down in research, becoming so enamored with the information they’re collecting that they somehow neglect, or delay the act of pure imagining, the result of which is a kind of precise lifelessness that has neither the full authority of journalism, nor the full bloom of storytelling. I try to avoid this by finding the point at which the research invokes my imagination, when I feel I know just enough to make the plunge into the great mystery.
So, it was strange, and somewhat eerie, to reread the parts of my novel where I am describing Alma’s physical experience of her illness:
Sitting very still, Alma catalogued her symptoms du jour: the thrumming pain in her lower back, a numbness in her left hand, fatigue like a cairn of stones piled atop her chest. No spasm in her right leg today. No vertigo. No careening rollercoaster headache. Over the years, Alma had learned to survey herself in this manner, eyes closed in concentration, attune to the battery of symptoms that came and went, until she had come to envision her body as one of those old-fashioned telephone switchboards, lighting up and down in a frenzy of incoming calls.
Alma fingered the first few notes of the Franck sonata, humming a little to herself, the fingers of her left hand fanning out to the first extension, reaching for the major third. The problem was that, with the numbness, she couldn’t bend her fingers reliably. The impulse to bend them was strong—will and muscle memory—but the translation to action was weak; she had to look to see her fingers tremble in trace compliance. For Alma, the biggest cruelty of her disease was this alienation of mind and body. Like an unhappily married couple, they warred with one another, grew distant, retired to opposite ends of the room, communicating only in stiff, furious bouts.
Five hours later she woke from a dream about an earthquake, only the quaking did not subside. She spent rude seconds in violent tremor, lying on her side, her left leg pedaling the bed sheets as though riding an unseen bicycle. “This isn’t funny,” she said to the empty room. Her sheets were soaked in sweat, her left leg still now, feigning rest.
She went into the bathroom and turned on the light. Her face in the mirror was mushroom-colored, sunken-cheeked, with dark, rubbery circles under her eyes, her loose, damp hair sticking out in all directions. She looked like Caravaggio’s head of Medusa, Gorgon monster with writhing hair. Some wild, defeated thing.
And then her whole life had simply stopped, like a broken-down car by the side of the road.
I cannot speak for someone with MS, but the descriptions of Alma’s hyper-awareness of her body, the constant assessment of her symptoms, and the feeling of alienation between her mind and body, turn out to be spot on for a person with cancer. Of course, my symptoms are mainly the result of chemotherapy, and not of nerve damage, but the fatigue, tingling, numbness, dizziness, spasms, and muscle weakness, feel all too familiar. In fact, so much of The Fetishist, which is, in part, a mid-life meditation on aging and mortality, and the grieving of youthful passion, rings more true to me now, as lived experience, than it did when I was writing it, that it kind of freaks me out. How could I have known then, for example, how powerfully Caravaggio’s head of Medusa would speak to me now?
The passage where Alma wakes up in the middle of the night, and goes into the bathroom to look at herself in the mirror, occurs early in the novel, as she confronts her illness. She has hair, where I do not—no writhing snakes for me—but the image of the Gorgon head has haunted me throughout my illness. The painting, which I saw in the Uffizi, on my 2010 trip to Florence, depicts Medusa at the very moment Perseus has cut off her head, and the look of horror and disbelief on her face is gut-wrenching in its immediacy. She is already killed, but here is the blink of consciousness when she realizes it. (For some reason, it reminds me of that scene in The Wizard of Oz, when Dorothy accidentally throws a bucket of water on the Wicked Witch. As the Witch is melting, she has a similar moment of awareness. “Oh, what a world! What a world! Who would have thought a good little girl like you could destroy my beautiful wickedness?”)
Medusa, according to your source, was either a victim, a beautiful acolyte of Athena who was raped by Poseidon, and turned into a monster by the jealous goddess, or she was a villain, a golden-haired seductress who defiled the Temple of Athena by having sex with Poseidon there, and was punished for her transgressions. In other accounts, she was just always ugly and hateful. No matter the version, there is no doubt that Medusa was powerful, and that her power came from her rage, which literally stopped men in their tracks, turning their flesh and blood into cold, hard stone.
Given the kind of child that I was, with my strange affinity for the marginal and misunderstood in literature—the Rumpelstiltskins and Evil Stepsisters—and the rebellious adolescent I became, steeped in second-wave feminist texts, like Sexual Politics and The Female Eunuch—it’s little wonder that I saw Medusa as a shining example of a Fuck-You Sistah of the Movement, a Take-Your-Dick-and-Shove-It feminist icon.
But I look at her differently now that I am sick.
Chemo treatments have left me bald, acne-ridden, prone to rash and swelling, making comparisons between me and a hideous Gorgon, or a green-faced witch, seem apt. When I first reread the passage about the Medusa in The Fetishist, I imagined myself, not Alma, wrenched out of nightmare, looking at my face in the mirror, and seeing her staring back. She is shocked, aghast, barely comprehending what has happened to her. Blood streams from her severed neck, and the snakes seem still to writhe—on their faces, their own expressions of hissing indignation. It is that moment of realization that I see. That look that says, “I am dead,” and “How can this be?” The look of a woman who was going about her business, when she was abruptly cut down.
Some wild, defeated thing.
“[It is] far more horrifying,” writes the Slovenian philosopher and cultural critic, Slavoj Zizek, “…to see the absolute silence that marks the suspension of life, as in Caravaggio’s Testa di Medusa: is not the scream of the Medusa by definition silent, ‘stuck in the throat,’ and does not this painting provide an image of the moment at which the voice fails?” It is this silent scream, stuck in the throat, this failure of voice, that personifies for me, my biggest fear of death. Not death itself, but the silencing. The sudden cessation of full-throated expression—of fear, of anguish, of loss and regret. We’ll never know, in Medusa’s case. And what of mine?