On Beckett and Writing with a Brain Disease

When you’re sick, it’s tempting to yearn for how you once wrote. But thanks to Jess Thom, a British actor who performs in Beckett’s short play ‘Not I,’ I have begun allowing who I am today into my writing.

For the last five years, I have been ill with an autoimmune condition called Addison’s disease that has damaged my adrenal gland, and another that combines features of systemic lupus erythematosus (SLE) and Sjögren’s syndrome. My symptoms—painful swelling and arthritis, a debilitating form of neuropathy, drenching sweats, fevers, rash, edema, leaden fatigue, inability to think straight—came on overnight. Since December 22, 2015, my life has been dramatically recontoured, shaved down into something smaller, denser, the strictly essential.

I was bedridden for almost two years, then mostly homebound for two more. As my conditions are untangled, I’ve found some degree of relief in medication and lifestyle changes but must restrict activities outside the home to one per day, knowing there’s a good possibility that I’ll need the following day to recuperate. Fatigue and brain fog, especially, have posed tremendous challenges to writing. I’ve written in bursts and had fiction published sporadically, and I contributed two essays published in anthologies, one of them a New York Times bestseller. Still, the gaps between writing days can be months long, as I’ve struggled to get back to things—to what I was doing, to the vision I had for my third book, to the writer I was.

Then, in the spring of 2020, I developed serious neurological complications. My autoimmune condition now affects my central nervous system. My specific brain problems fall into a gray area in terms of official diagnoses; doctors have called it one thing and then another. A variety of testing shows damage specifically to my limbic system, responsible for memory, focus, and information processing. I’ve had temporal lobe seizures that caused a glossy sheen or glittering to overtake my vision as I uncontrollably entered a trance. I’ve experienced mania, severe anxiety, hallucinations, and delusions, which have been reined in by psychiatric medications, immunoglobulin infusions, and steroids since a hospitalization in June 2020. The time it takes me to read has markedly slowed, my memory problems forcing me to go back a page, two pages, ten pages, over and over. I repeat stories so often that, when I’m telling a story to someone whom I don’t trust to alert me if I’ve already told that one, I will just ask. I go through periods with strange muscle twitches. Since my condition does not adhere to a specific and studied diagnosis, other than that it amounts to an acquired and perhaps ongoing brain injury, no doctor can tell me what degree of recovery I can expect. Even if they could, I’m not sure I’d want to know.

The greatest pain I suffer from the changes to my mind comes from living in a world that has been stripped of so many of the things that gave my life meaning. I had been teaching fiction workshops in a four-year college for incarcerated students. I had been editing a literary journal. I had been writing my third book—a memoir about growing up with bipolar disorder, set against the backdrop of 1990s NYC: all the parties, the psych wards, the boyfriends and girlfriends, fake IDs, clubbing, a stint in the movie business, the darkness and surrealism and miracle of surviving that time. It was a book I’d sworn never to write, but which came knocking once I’d finished writing a novel about a man from the other side of the world, as if I’d gotten as far as I could from myself and now it was time to come home. I was moving forward at a steady clip and had a couple chapters published in a literary magazine. Once I got sick, my work on that manuscript stopped—and once my autoimmune disease began directly affecting my brain, I thought no writing would be possible for me ever again.

The greatest pain I suffer from the changes to my mind comes from living in a world that has been stripped of so many of the things that gave my life meaning.

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Samuel Beckett inspired me, at age twenty-two, to leap from a sporadic writer of journal entries and other private musings to dedicating myself to a regular practice of writing and sharing my work with others—which ultimately has led to publication and a career in writing and teaching writing. Having dropped out of college, gone to drug rehab, worked as a waitress in a pancake house and then a Lebanese bistro, I spent a year from 2003 to 2004 back in my hometown of New York City taking classes at Hunter College. There was an elderly man who sold used books for a dollar each; he displayed them on a card table on the corner of the main university building. One day I stopped at his table before heading down to the subway and bought a copy of the great trilogy, Molloy, Malone Dies, and The Unnamable. I was largely unfamiliar with Beckett’s work, having read only Waiting for Godot in high school and seen a production of the same, but the trilogy was a 1965 Evergreen Black Cat edition and the cover grabbed me.

I would later miss subway stops on several occasions while reading Molloy—the brutal and comedic descriptions of mortality and physicality, the vast drabness of the landscape through which the titular protagonist meanders, and his fixations and compulsions. Molloy’s body seems to put off fumes and fall apart like death in slow motion as he makes his way, effortfully and distractedly, toward his mother’s house. Despite the grimness of both his interior and exterior landscapes, there is much humor, albeit as dry as it comes—but beyond that, there is a secret joy, which one will find in Beckett, particularly in his novels and short fiction.

The daring and freedom of the writing—the necessarily long sentences and minimal use of paragraph breaks, the meditative lens put to Molloy’s actions and rituals, and the magic of how extended descriptions of the mundane, the tedious, and the gross maintain a fierce grip on the reader—accomplishes a seemingly impossible feat, painting these portraits of pseudo-inertia such brilliant hues so as to mesmerize. The novel showed me something new that I hadn’t known writing could do. Beckett’s reader senses the author reveling in the prose: the rhythm, the syntax, the potential to create something that counters or juxtaposes surprisingly with the subject matter. She intuits the ecstasy of authorial creation, and it hits hard and unexpectedly, like a stranger’s perfume suddenly whiffed in a crowd.

I fell in love with Beckett’s language most, perhaps to a dangerous extent. Explaining his preferences for the ocean over mountains or plains, Molloy narrates:

Much of my life has ebbed away before this shivering expanse, to the sound of waves in storms and calm, and the claws of the surf. Before, no, more than before, one with, spread on the sand, or in a cave. In the sand I was in my element, letting it trickle between my fingers, scooping holes that a moment later filled in or that filled themselves in, casting it in the air by handfuls, rolling in it. And in the cave, lit by the beacons at night, I knew what to do to be no worse than anywhere else. And that my land went no further, in one direction at least, did not displease me.

In a magic of syntax, Beckett makes the moments of muted joy in the narration hit like punchlines. The artistry between each set of parenthetical commas is a delight. Something about the utter simplicity of the plot (a man with a place to be, going there), the audacity to subvert the expectation for more, and instead to do all types of pivoting and pirouetting and twirling across the page, but subtly, stepping lightly—giving the illusion of easy turns of phrase while spinning the reader’s mind to giddiness. This made me want to write. So, I started. I began with language, telling stories based in character and mood and with great care put into rhythm and style and sound, concerning myself later (for better or worse) with the machinations of plot.

Between 2010 and 2015, I wrote two books: a novel, The Australian (Dzanc, 2017), and a short story collection, Greyhounds (currently on submission). The final year of writing my novel, I sat at my laptop every day before my office job, from five to eight thirty a.m. I was not a writer who disliked writing, though of course it had its challenges and frustrations and tedium; I loved my writing time—the process of creating, revising, building sentences to strike in unexpected ways—and occasionally I’d find myself flying through my mind, the page, the words coming from somewhere else, it seemed: that coveted experience of flow.

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I’ve had a revelation—one borne not of my own ingenuity, but of the incredible vision, wit, and immensely fascinating work of a British artist, activist, and actor (though she does many things), Jess Thom, who has Tourette’s syndrome and toured performing Samuel Beckett’s short play Not I.

In interviews, Thom notes the striking parallels between her Tourette’s and the circumstances and speech of the play’s sole character, a nameless woman who is visible only as an illuminated mouth—referred to in the stage directions as Mouth—speaking in surging fragments centered on an otherwise blacked-out stage. Thom’s two most frequent vocal tics are hedgehog and biscuit, and when she says either she tends to punch herself in the chest. Each of her performances of Not I is unique, as the scripted speech intermingles with Thom’s unpredictable tics, creating fresh dimensions to the narrative.

Sometimes the verbal tics punctuate a statement; other times, Thom has just finished a scripted line or phrase during which, as she has explained, the intensity of her focus keeps her tics mostly at bay, and upon the completion of the idea or declaration, tics rush forth into the opening they are granted. Mouth describes an event distinctly neurological in character as the origin of her bursts of speech: she was “wandering in a field . . . looking aimlessly . . . for cowslips . . . to make a ball,” when “suddenly . . . gradually . . . all went out . . . all that April morning light.”

Darkness, light, and buzzing are a refrain throughout the play, which reaches its climax at an insight that harmonizes with the physical and vocal tics that enrich Thom’s portrayal: “all dead still but for the buzzing . . . when suddenly she realized . . . words were—what? . . . who? . . . no! . . . she! . . . realized . . . words were coming . . . imagine! Words were coming . . . a voice she did not recognize . . . at first . . . so long since it had sounded . . . then finally had to admit . . . could be none other . . . than her own.”

This made me want to write.

In a TED Talk, Thom emphasizes understanding her syndrome through the lens of art—in fact, she offers her verbal tics up for other artists’ inspiration and use on her website—and asserts that Tourette’s offers a wealth of creative potential, both to those with the syndrome and others. Throughout her public career, Thom has stated and demonstrated the reality that there is great power and opportunity in allowing the self and its peculiarities to define art, rather than trying to grind through and manufacture something that is free from any signs of the mind that wrought it—the self-imposed oppression that I have been operating within for a long while.

In her performance of Not I at The Public Theater, on BBC Two, and at other venues, Thom very clearly did not play Beckett’s character despite her neurological condition; she did so with her condition, inviting her tics to meaningfully inform her portrayal. It makes me think back to the trilogy: Molloy, Malone Dies, and The Unnamable. Though not Tourettic, Molloy is surely compulsive, and his impulses are powerfully propulsive. There is something akin to my experience of life with an autoimmune brain disease in his existence within a washed-out, stark expanse. His obsessive rotation of stones from one pocket to the next to the next to his mouth to the next pocket—these are called “sucking stones,” and he finds them by the ocean—is much like my need at times to remind myself of basic facts—the season, my age, my husband loves me, I love him, and then our dogs, and so on—and to place myself in my body, in time, in space. Thom brings the character into that Beckettian landscape, this Beckettian landscape, the one I inhabit—and I think Beckett would’ve seen all of us here—and reminds me that there is room for life, air to breathe, the ocean isn’t ever that distant, really, and most surprisingly: I populate this vista.

I am indebted to Thom for doing with her work what I, now, have begun to do with my writing: aiming for both generosity and rigor, allowing who I am today, all of me, into my writing, letting the unusual features of my brain define my work in cooperation with my imagination and curiosity, and seeing this not as a constraint or deficit but an aspiration. While my old self would rely on strong, meticulously staked-out first drafts, today I must silence the censors and allow my first go at a piece to be more of an outpouring; if I get too focused on the sentence level during the initial creation, I quickly forget the big picture—the shape, the content, the point. In revisions, I can let my natural obsessiveness about style take over.

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I have always believed that artists must make every sculpture, every poem, every sonata that springs onto their palate, regardless of its objective merits (or lack thereof), in order to create the next thing. Still, for much of my illness I would become angry with myself for producing duds more than I used to. What I’ve learned is that accepting and working with this brain—my brain—means that I no longer benefit from relying on the first inspired burst. Much more value has come with putting a new lens to what may initially seem like a “dud,” but when viewed in the right light holds promise: as an object to be reshaped, as a worthwhile smaller work to be carved out of the original, or as raw material for another project entirely.

Ill or not, none of us stop moving forward, stop changing, and our work will inevitably reflect our growth, our relationship to our surroundings, our senses, our suffering, our hopes, our wrinkles, our scars. Trying to resist is to vie for stagnation. What enchants and puzzles and has us rapt reading Beckett or viewing a performance of his plays is that the stagnation of his characters is an illusion. Their humanity is perpetually blooming, making us laugh or ache, their longing fermenting, marks of age dragging across their flesh. Vladimir and Estragon wait for Godot—but they are alive as they do, their psyches unfolding before us, growing richer, a leafless tree coming into view. Stagnation in writing is not only undesirable; it’s impossible.

When you’re sick, it’s so tempting to yearn for how you once wrote. Thom’s approach—and confrontation—with Beckett has taught me the futility of such thinking. Still at the start of this new approach to my work, I feel refreshed and freed up and intrigued by what might happen next, for me, on the page.