I am a card-carrying caregiver. It says so in green block letters across a government-issued ID, giving me permission to enter marijuana dispensaries and buy the weed purported to help with my husband’s Parkinson’s symptoms. This card is more formality than necessity; he once tried low-THC capsules, but the fact that his disease remains well controlled by pharmacologicals, alongside his aversion to taking more drugs than necessary, keeps him from partaking.
Still, the card is there, naming me what I do not name myself.
The Michael J. Fox Foundation calls people like me care partners, recognizing the relationship is neither one-directional nor one-sided. I rebel against both options, preferring “wife” or “partner.” Perhaps this is a form of denial, a will against his inevitable decline, a warding off of the day he will require my care. Perhaps these names simply feel superfluous. He was diagnosed before we met. Unlike many who promise in sickness and in health, our vows were not for a hypothetical future state. Wife and partner carried this heaviness from the start.
In Lean Fall Stand, Jon McGregor’s fifth novel, he grapples with questions of identity, language, and care. Robert “Doc” Wright is a living anachronism, a Sean Connery type who believes in a certain way of doing things—the way they’ve always been done—and equally resists advances in technology and social norms.
For three decades, Robert has spent nearly a third of each year in Antarctica, away from his wife, Anna, and their two children. He leads scientific expeditions, having dropped out of his PhD program in exchange for the thrill of the continent’s rugged, silent expanse. For three decades, Anna—a researcher and faculty member—has worried he wouldn’t come home. The novel’s second act opens with the call she has been dreading: “It’s Robert. It’s your husband. I’m sorry to wake you. We need you to come.”
Within hours, she boards a plane to a hospital in Santiago, Chile, where her husband is being treated after a near-fatal stroke. Within weeks, she is completing carer questionnaires, assessing her ability to provide home care. All the while, she wonders not just if she can do it, but if she wants to. Family was not part of her plan. Her work as a climate scientist was her life, until she met Robert and learned he’d be gone four months of the year. She could get married and do her own work, have her own life, build her own prestige.
Before their wedding, Anna’s friend Bridget asked the obvious question: “So, essentially, you’re going to marry him on the basis that he won’t be around much?”
“Yes, Bridget, that’s correct,” Anna answered.
It is Anna who raises the children. Anna whose research might save the world from its rising temperatures. Anna who does what needs doing. And now, what needs doing is caring for Robert.
Her work suffers. Her garden suffers. Her colleagues’ empathy wanes, and opportunities she’s worked toward for months, years, vanish under the guise of reducing her burden. Her sense of self suffers. As I read, I was reminded of something I once heard: When a woman in a heterosexual relationship is diagnosed with a serious medical illness, her male partner is six times more likely to leave her than she would be to leave him if the situation were reversed. Would Robert have done the same for her, I wonder, or would he have stayed in Antarctica, leaving Anna’s care to their children and her friends? The ratio of women to men—about 10 to one—in the caregivers’ support group I reluctantly take part in each month colors my guess.
At the start of act three, Anna struggles to connect with her unwelcome new role at their first aphasia support group meeting: “It was difficult to tell who was a patient and who was a career, except that some people seemed less inclined to speak. Patient was the wrong word, she suspected. Carer was almost right.”
I found myself arguing with her on this point: “You have many titles, Anna! Professor. Scientist. Researcher. Doctor! And yes, wife and mother. This identity, carer, is not almost right, not for you. If the male partners ever did show up—and they are noticeably absent from this fiction, too—I bet no one calls them carer.”
Still more nomenclature is introduced as the facilitator begins the first exercise:
“‘I’ll ask your supporters to now just gently roll that ball around in the cup of your hand, pushing against each of your fingers.’ Supporters. This was a new one to Anna. It was usually carers, or occasionally partners. Supporter was more neutral, perhaps. It included people here who looked like nursing staff, rather than family.”
Later, McGregor adds another, this one for those who are paid—one I have never heard used in the United States—care worker. Anna’s response to these assigned identities screams from the page without ever appearing on it: Is this who she is? Who Robert is?
When my husband and I left our first Parkinson’s support group meeting, held in a conference room of a synagogue down the street from the University where we both work, we laughed. We laughed at the old men who boasted about their fast punches in Parkinson’s boxing classes. We laughed at the old women who mischievously asked about medical marijuana. We laughed because it was easier than wondering if that would someday be us. We laughed because we knew it would be. Patients in aphasia support group might improve. Patients in a Parkinon’s only hope to maintain.
In a recent panel talk with 1455 Literary Arts, author Gina Frangello and others discussed why we must write through the body. The answers are many. For better writing. For better reading. But also, as Frangello notes, “Writers are great at empathy…but sometimes we forget that the character has a body. And what happens when we forget…is that we are, whether we intend it or not, writing in a homogenized, normative body that the reader then imagines because it has not been otherwise specified.”
While the book’s origin story is McGregor’s 2004 trip to Antarctica, the months he spent as a guest of his local aphasia support group were demonstrably essential in helping him cross the distance of writing about a body and mind unlike his own—and bringing the reader with him, surrounding us with Robert and Anna’s frustration. For seventeen pages after his stroke, and many times after, the reader is fully immersed in Robert’s disjointed thoughts: “Lift. Voice talk. Luke talk. Talk nonsense words. Stand. Man grip a get now. Self on your now now.”
If the reader is aggravated by trying to make sense of these scrambled words within a few paragraphs—as I was—I suspect McGregor’s goal has been accomplished. For a few moments, we get a glimpse, a shadow of what it is like to live without language after a lifetime of understanding.
Similarly, there is no relief for Anna, no climactic arguments or realizations, no release of tension. It is the same day repeated, with minor progress noticed only by her, their children complaining that Robert remains unchanged. This, too, is the reality of a life shared with illness and injury.
In the final act, McGregor’s body-writing shines and the research he put into Lean Fall Stand comes to life as dancers help support group members learn to use their bodies to connect in new ways:
“Gavin smiled, and held her gaze. Mary’s right hand was limp in her lap, as always, but her left hand was alive in the air.
‘Went the weft the way we were,’ she said.
Her movements were still slow and jerky, but Gavin was taking this staccato rhythm and absorbing it into something slowly fluid. As their movements developed a pattern, Mary relaxed into the hold of his eye contact.”
They have survived stroke, traumatic brain injury and electrocution; they each have different abilities; and we see how they use their bodies, with all of their strengths and limits and humanness, to come together and tell their own stories.
Though there was a time—before we met, before his diagnosis—when my husband traveled to Antarctica, Robert and Anna’s story is not ours. It is barely even close. But Lean Fall Stand reads like a meditation on the questions we all must someday face: Who am I? What can I stand? Who will be there when I fall?
Lean Fall Stand
By Jon McGregor
September 21, 2021
Meg Ringler is a writer living in Pittsburgh, PA. She is working on a collection of essays about care, or, to be more exact, sharing her home and husband with Parkinson’s disease, the joy of sobriety and her love/murder relationship with plants. Her work has previously appeared in Catapult. Find her on Twitter and Instagram at @Meg_Ringler.