Bioethics Forum Essay
Aphasia, Communication, and Caregiving
In the dramatic opening chapters of Jon McGregor’s novel Lean Fall Stand (Catapult, 2021), three men are caught in a sudden, violent storm on the coast of Antarctica. They are British research scientists updating maps of the isolated area. Doc Wright, the team’s General Technical Assistant, has been coming to Station K for many years; Luke Adebayo and Thomas Myers are young scientists new to the job. Not expecting a storm, they all embark on a side trip to take photographs but skimp on basic safety rules: Remain calm. Stay in place. Make contact.
Throughout the novel, communicating—making contact—is a major theme expressed at first through difficulties in radio transmission and later in communication about medical conditions, chances of recovery, and daily life. One example from Antarctica: After Doc has fallen from a cliff, he responds with characteristic authority when his radio crackles to life. He says, “Stand by for a brief quickening… Situation upstate.” Medically astute readers will recognize that Doc has suffered a stroke, which sets into motion the other two sections of the novel—”Fall” and “Stand.” Once evacuated, Doc loses his nickname and becomes just Robert.
While the Antarctica landscape is pivotal, the rest of the book takes on familiar problems of communication in health care. Anna, Robert’s wife, learns about his injuries in a phone call from the hospital in Santiago, Chile, where he has been airlifted:
“It’s Robert. It’s your husband. I’m sorry to wake you. We need you to come.” She doesn’t understand. The [caller]was talking about flights and passports. Later the [caller] will say that Robert had “a bit of a stroke.” She knew that he’d meant to say “massive” or “catastrophic” or “dangerous” stroke because they were putting her on the first available flight… People didn’t always say what they wanted to say.”
Communication and Caregiving
McGregor, the novel’s author, is a professor of creative writing at the University of Nottingham in England and the winner of many awards for his earlier novels. In 2004 he travelled to Antarctica as a participant in the Writers & Artists Programme run by the British Antarctic Survey. Although his trip was cut short, the idea of writing about Antarctica stayed with him. In a video interview, McGregor says that he wanted this novel to portray “how language can be used to show the loss of language.” He sees aphasia—the loss of language due to a brain injury, typically a stroke, like Robert’s—as part of a spectrum of human miscommunication. (Although commonly associated with acute events like a stroke, the condition can also develop slowly as reportedly occurred in Bruce Willis’s case.)
McGregor also wanted to show how aphasia affects many more people than the patient. Anna and Robert have been married for over 30 years and have two adult children. Anna is an oceanographic researcher, as committed to her job as Robert is to his. She doesn’t mind his yearly absence of four months or more.
At the airport in Santiago, she meets Brian, the man who called, and he takes her to her hotel. It was too late to go to the hospital, he says. Later she realizes: “When Brian had said it was too late to go to the hospital, he had meant too late in the evening. Not too late. It wasn’t too late, yet.”
Moving from the frozen shores of Antarctica to more temperate hospital and rehab settings in Santiago and Cambridge, England, where Robert and Anna live, McGregor turns to communication lapses that are more familiar, though no less enigmatic. She learns from one doctor that Robert is being “repatriated”—that is, sent back to Cambridge—but no one has informed her. This doctor will accompany Robert, but Anna will go on a different flight. Anna encounters the same scattered information in the Cambridge hospital when Robert is getting ready to go home.
As doctors, nurses, and therapists scan and monitor Robert, they give Anna “fragments of explanations.” Depending on who is speaking, Robert’s chances for recovery are slim, just a matter of time, or improving. What “recovery” really means in aphasia is left unsaid.
An additional source of worry is the news that the Institute, the fictional organization responsible for the expedition, is conducting inquiries about Thomas, who did not survive the storm. But Robert is unable to give a coherent account of the events. Yet he exhibits unease when questioned and does remember some things. When a therapist asks him to point to a blue airplane on a recognition test, Robert becomes agitated and keeps saying, “Red. Red. Pay-lane.” He wants to say that the plane that evacuated him was red, not blue; but the therapist fails to understand. Medical and nursing students might use this novel to identify communication problems and think about alternative ways to be both truthful and compassionate. In another interview about his experiences at an aphasia support group, McGregor emphasizes the importance of listening, not just talking.
Anna is sure that Robert, always meticulous in his work, would not have put his young teammates in danger. An inquest into Thomas’s death does not result in any charges for Robert.
At home Anna is not prepared for the unending chores of being Robert’s carer. In outlining her daily tasks, McGregor devotes a full page to them, all following the phrase, “She had to . . . ” “Had to” is not the same as “chose to” or “wanted to.” Meanwhile, Anna’s colleagues at work are gently but firmly shutting her out of major future projects.
Cathy, a home care aide (in U.S. terms) comes three times a week to help Robert with dressing, toileting, and personal care. Cathy serves as McGregor’s voice in complaining about budget cuts that have reduced home care services. “It gets worse every year,” she says. “Five, ten years ago, I’d have been here every day. And there’d have been two of me. Two of me, Mr. Wright . . .” She adds: “You’ve got Mrs. Wright here at home with you. So there’s less danger…. You score zero, you know.” For American caregivers, used to hearing that the U.K. provides much more help for longer periods of time, this comes as a surprise. But the difference is mostly in scale. Every system is facing increased demand and fewer resources. In the video interview cited earlier, McGregor clearly supports greater assistance for carers like Anna.
Learning to Adapt
The final pages of the novel move to still another setting—a community support group run by Liz, Robert’s speech therapist, and Amira, an aphasia specialist. Here we meet a dozen people who have speech and movement difficulties like Robert’s and go through the first stages of uneasiness, discomfort, and confusion. The participants are joined by their “supporters,” which include paid carers as well as family.
The first few sessions are not successful, but only one person (who wants “proper speech therapy”) fails to return. The participants start to greet each other and become friendlier. Amira then introduces three dancers who again confuse the group:
“They are not there to dance!… No, says Amira, the dancers are going to show you new ways to communicate using movement. They will be with you to prevent falls and to help you use this new way of expressing the real you.”
The end of this section is a performance by the group using their newfound skills. Although each person describes their life using movement and speech, Robert’s story is clearly the focus. He shows on a map of Antarctica where Station K is located and tries to describe what happened. Sounds of wind and snow accompany him. Then the sound changes to radio interference.
“This—Doc. Hello? Hello? Christ. Now. Hear—me? Hear—me? Over.” As he leans over backward, he falls, but Rachel, one of the dancers, is there to catch him and lower him to the floor. Cue applause. We are brought back to the first pages of the novel, but now the radio message is heard and help arrives.
For Anna, this is the beginning of a new phase of her life, accepting Robert’s disability and what it means for her life. “She had only ever wanted him to come back from Antarctica in one piece. And he had come home, but he was different . . . He had come back.”
An untitled epilogue takes Robert back to the cliff where he has fallen. “He knew his body was failing. He was damaged. He knew it would be okay. He gets up, hears droning in his head. Then he sees a small red airplane, barely moving toward him. He didn’t even know the word for red, but he knew this was the small far-off beginning of something new.” He now has tools to make contact.
Carol Levine, MA, a Hastings Center fellow, is a senior fellow at the United Hospital Fund in New York and former director of the UHF Families and Health Care Project. This book review originally appeared on the United Hospital Fund’s website.
Thank you for your very thoughtful article. As a bioethics/medical ethics student, I was most struck by your conversation regarding the lack of support provided for individuals suffering from aphasia in the United States. This is not a new narrative: individuals in palliative care often find themselves without the necessary resources to be able to comfortably survive. Due to this lack of resources, family members such as spouses or children often have to put their own lives on hold to become full time caregivers. This was seen with Anna, who did not have a choice between her career or her husband, because the home-aid was only able to come a few times a week. As the leading nation in medical and healthcare expenditure, it seems ironic that there is not enough funding to ensure that all individuals in need of home-aid are able to receive it in abundance. Due to the baby boomer population, our nation is catapulting into an era in which a large majority of the population will be elderly, which will further put a stress on the demand for home-aid, end of life care, and palliative resources. As stated in this article, Europe is advanced in this field. It begs the question of whether we should turn to our neighbors across the pond, take a leaf out of their book, and begin to implement changes in order to ensure that our in-need citizens, such as Robert, are not “covered,” but truly “covered.”