Acte Gratuit

Illustration by Na Kim.

18/04/2022, 14:28, CT Angiogram renal & abdominal

No vascular calcification.

No renal calculi.

The kidneys are symmetrical in size (right = 11.1 cm; left = 11.0 cm) and normal in morphology.

Single left renal artery; no early branches. Single preaortic left renal vein.

Single right renal artery, branching laterally to the cava. Single right renal vein.

No extrarenal abnormality.

The plan is for a left nephrectomy.

***

My family likes to joke about the time I threw my brother to the alligators. We were in our early twenties, and on our wayto the Everglades in Florida. The taxi driver taking us there from our hotel on a nearby island stopped at a swampy clearing off the freeway. “They only feed at night,” he said, not particularly reassuringly.  (This was also a man who swore on his children’s lives that he had seen the Florida “bigfoot” twice.) “In the daytime they’re as harmless as dogs.”

He encouraged us to take a look, but I itched for five minutes of silence. My brother tried to persuade me, but I declined, claiming that I could see them just fine through the window. He came back in under five minutes, the whole episode passing without incident, the sun-drunk gators barely twitching from their sleep. My brother’s telling—and my mother’s and my father’s—has the creatures lurching from the water, ready to snatch him in their jaws, while I lock the car doors from the inside with a defensive click. I always laugh. It’s a better story his way.

***

In July 2020, my brother, at thirty-one years old, was diagnosed with an extremely rare, chronic and degenerative kidney disease. Two weeks before, he had asked his long-term partner to marry him, and was several hours late to his engagement party because he’d spent the day being tested at Guys Hospital, near London Bridge. Once he arrived, fatigued and swollen in the legs and ankles, a symptom of his still-undetermined illness, a guest handed him a glass of champagne and the party, in his partner’s beach-front garden, resumed. Only my mother betrayed any hint of consternation. “It’s never a good sign when they request a biopsy straight away,” she mused, nervously chewing on her hair before I flicked her hand away.

The following week, I was walking home from yoga class when my mother called me to explain that my brother had been diagnosed with “IgA nephropathy,” also known as Berger’s disease.  Berger’s disease is a condition that occurs when an antibody called immunoglobulin A (IgA) builds up in the kidneys, causing damage and inflammation. Back then, my knowledge of the kidneys—their essential function to filter, drain, and rinse the blood of toxins— was unworthy of the most entry-level school biology. A friend innocently asked me over dinner why exactly human beings had two kidneys in the first place and I found myself totally unable to respond.

***

Last fall, I was teaching a seminar in Paris, renting a university flat with malfunctioning electricity, heating, and a highly erratic shower. I had come to the city because I wanted to cut off most Anglophone communications. In any case, I spent so much time in the bistrot on the corner that the waiters said that I should start giving them English lessons for free.

One Sunday morning in November, my brother called me while I sat at my preferred table to tell me that he was approaching what his doctors had called “renal endgame” and would very likely need, in the next year, either full-time dialysis or a kidney transplant. “I’ll do it,” I said, with the spontaneous ease that is often called gut instinct. Unlike almost every major or inconsequential decision I have ever made—whether to eat eggs for breakfast or to apply for a job in California or to get a bike or to leave a city where I lived in for a decade or to switch my dating-app preference to all genders—I did not overthink it.

***

The health and function of a kidney is assessed numerically, via what is called Glomerular Filtration Rate (eGFR). An eGFR of 60 or higher is in the normal range. When I reported to the renal clinic at Guy’s Hospital at the end of January, my brother’s rate was just above 20—still above the threshold for a donation, at around 15. Still, his nephrologist began us on the series of procedures, known as a “work-up,” that would determine if I was a match for him.

The first thing was to visit a designated bathroom, produce a urine sample, and deposit the vial via a small hatch at the rear of the toilet cistern. (“Please put your name and D.O.B. on the bottle before urinating, please,” a laminated sign advised). Then my weight and blood-pressure was taken. In the waiting room, I picked up an informational brochure which told of Hattie’s Transplant “Journey” and Bruno’s Donor “Story.” This literature impressed on me that recipients often wait decades on dialysis, and that thousands of people die on the waiting list each year due to inadequate supply. The title of the brochure was “Living Kidney Donations: the Gift of Life.”

In a study of the history of non-dependent forms of intimacy, the social anthropologist Julienne Obadia questions why the “rhetoric of both living and deceased organ donation is steeped in the notion of “the gift”—particularly “the gift of life.” She suggests that it is both because of the scarcity of living organs, and because such donations often are uncompensated. Yet, since the publication of Marcel Mauss’s 1925 The Gift, which argued that gifts and the practice of gift-giving are the origin of civilized, relational, and respectfully reciprocal societies, thinkers have debated whether there can ever be a “free” gift unencumbered by self-interest or social debts.  Jacques Derrida argues that the concept of a “kinship gift” is particularly paradoxical, since a gift, in his view, can only count as such if it is given without expectation of return, a degree of weightlessness difficult to achieve between relatives. “Can there be any gift within the family?” he asks. “But, at the same time, has the gift ever been thought without the family?” Growing up, when it was my birthday or my brother’s, our parents made sure that the other sibling also got a hefty present, to avoid feeling overlooked or left out. My brother took this idea of fairness even further, counting the number of presents that the birthday-sibling had received, to ensure that the other did not receive less when their day came. 

***

The second round of tests required a nurse to draw my blood at one-hour intervals for a duration of five hours. “Your veins are not playing ball. They’re not budging. Are you dehydrated?” she asked me within minutes, side-eyeing my cup of takeaway hospital coffee. I did not flag that I was hungover, after having indicated on the General Health Questionnaire that I drank “very rarely”—one to two units socially a week. It was not exactly a lie, but it was increasingly less true.

“If on the off-chance that these samples prove that you are somehow not related to your sibling,” asked one form, “would you want to be made aware of this?” I ticked the box that read “I would wish to be informed.”

***

In The Accursed Share, Georges Bataille defines an experience of psychological “sovereignty”’ as an extraordinary moment of transgression, a singular instant of uncommon behavior in which human beings can become independent or liberated by refusing any “economics of necessity.” Wasting time and energy, squandering resources, and putting life somehow at risk all qualify. The singular instant is attached to nothing and preserves nothing, he writes. It is a “spare part,” or an “accursed share,” destined to be expelled, expended, frittered away. For Bataille, “the gift has the virtue of a surpassing of the subject who gives but, in exchange for the given object, the subject appropriates the surpassing.” The giver, in other words, becomes the giving, in both a pleasurable and disorienting loss of personal identity.

In the YouTube clip “Larry Doesn’t Want to Give a Kidney,” taken from an episode of Larry David’s Curb Your Enthusiasm, the protagonist goes to extreme measures to avoid donating his kidney to his friend Richard Lewis. In the episode, Larry and the hapless Jeff, another friend of Richard’s, test positive as matches, and, with neither coming forward of their own volition, submit to a game of “eeny, meeny, miney, mo” to determine whom should be the donor. The final syllable and pointer finger lands on Larry, and both men whoop, equally relieved. Jeff is confused. “You’re the loser.” “No, you’re the loser,” Larry replies, indignant.

Somebody has sent the clip to me as a distraction, comic relief from the endless medical case studies that I scroll through late at night. But when I get to this moment, I have to click pause. What does it mean to be the loser in this situation? Is the outcome I desire to be deemed ineligible for the procedure, or would I feel, having committed to the “work-up,” cheated out of something, some exceptional event, if it all fell through? Would my brother subsequently have to enter onto the extensive waiting list for other donors? In between another round of blood tests, a different nurse offered her opinion on the situation.  “From his point of view, there’s an obvious benefit,” she said, knotting a tight tube around my upper arm. “Whereas you’re coming into this already at a loss.”

***

I once had a mentor who taught me that if someone asked me to do something and it was not an “absolute yes,” then I should file it as a “hell no.” For a while, this gave rise to a new, hermetic and irresponsible way of living; I refused a lot of basic administrative requests and met almost no new people, but also saved a lot of time I would otherwise have squandered on the hell of other people’s book launches or bachelorette parties. The decision to donate a kidney to my brother was different, in that it did not count as a response to a demand. He did not ask me to consider it during that phone call in November. In speaking first and saying “I’ll do it,” I volunteered my body of my own free will. But this is not exactly true, and it risks entanglement in a dull, Hollywood narrative, one of innate generosity and uncomplicated heroism. Another thing the mentor often said: Tell the harder truth.

***

In the fortnight that I waited for results from the nephrology department, I devoted more time to the gym than the library and spent my evenings drinking wine in restless agitation. In a class I was teaching on the work of the French writer Hervé Guibert, I found myself confessing to a group of undergraduates that I had been late getting their work back to them because I was preparing to donate an organ to a family member. They blinked at me. I returned briskly to the excerpt, which I’d picked at the beginning of the year and debated aloud how best to translate the line, “Mon père et ma mère s’étaient réparti mon corps, selon des limites bien définies.” One student ventured, “My father and my mother divided up my body, splitting me according to clear limits.” Another proposed, “My mother and father had divided my body between themselves.”

***

The nephrologist—a slick, pony-tailed woman in a navy trouser suit—and I met five days later, in an airless consultation room. She asked me if I did a lot of exercise. She observed that I “almost” had the resting heart rate of an athlete, and cycled exhaustively through my plotless medical history before telling me that I was indeed a blood-type compatible transplant: with a tissue-typing mismatch of 1-1-1. The term “mismatch” was misleading, as the results demonstrated that I shared three antigen numbers in common with my brother: not a “full-house match,” in transplant parlance, but strong enough. The doctor listed some obligatory statistics outlining the risks of donorship: 1 in 3,000 chance of death; risk of pre-eclampsia in pregnancy up to eleven percent; 8 in 10,000 chance of developing end-stage kidney disease myself over my lifetime; possible accidental damage to other organs in surgery (punctures to the lungs most common); post-operation blood clots and infections (a likelihood of 1 in 10). “Rejection” was another possibility. “It’s important to be mentally prepared for the fact that even after going through the whole procedure and the surgery, your brother’s system could reject your kidney, either immediately, or in a year, or in a month.” She asked me to imagine how I might feel, waking up from surgery, to be told that the operation hadn’t worked, that my organ hadn’t “taken.” Later, I read about a case in which a woman lived successfully with a kidney she had received from her younger brother for six years before her body rejected it and she had to go on full-time dialysis. “I had a good run with it,” she told a newspaper reporter.

***

A copy of the results was mailed to the address of my doctor in the city where I did my PhD, but got bounced back to the hospital, as I was no longer registered at the practice. As the letter required approval by a medical professional, I enrolled at a new clinic just to have an address to which it could be sent. It didn’t arrive; two weeks later, it landed in my mailbox at the university where I was teaching. “On examination, Alice looked well,” I read on the NHS-crested paper. “Her abdomen was soft and non-tender with no obvious masses or organomegaly. I could feel her femoral and pedal pulses. She is not on any medication and has no known allergies.”

***

In 2020–21, there were 2,167 adult kidney transplants performed in the UK, a decrease of 32 percent compared with 2019-20, owing to the impact of the COVID–19 pandemic. Of these, 1,791 kidneys were donated after death. Current research indicates that most living donations are sourced predominantly from family members who prove eligible and compatible. Still, legal changes in the U.K. and advances in immunosuppressive medication and matching schemes have led to a significant rise in non-kin transfers, or “altruistic donors” since the late nineties. Also known as “Good Samaritan” donors, such individuals are particularly celebrated in the transplant advocacy world, and constitute about 3 percent of donations. In the U.K. there was a 60 percent rise in people who received a kidney from an altruistic donorbetween 2018 and 2019, and in the same period, the number of altruistic kidney donors surpassed one hundred for the first time in five years. Robert Wilkins, 61, whom I read about on the sporadically updated “News” page of the renal clinic’s website, had his kidney removed at Guy’s Hospital in 2013. He said he heard about the process of altruistic donations and decided to “look into it.” “I soon realized that I was walking around with an organ I didn’t require that I could instead use to help another human being in desperate need. When I considered the inconvenience and risk to myself balanced against the chance to save a person’s life, I felt compelled to become a donor,” he said.

Donors who withstand the tests, the uncompensated time off work, and the countless jars of urine for the benefit of a faceless other person make my own decision feel a little ordinary. They also leave me with a host of questions that the informational leaflets don’t quash. Why is altruistic donorship seen as so exceptional, and familial donation considered a “no-brainer?” What does this mean in terms of who is deemed most worthy of a kidney transplant? “That’s what we like to see,” said various hospital workers, clucking approvingly, every time I said I was hoping to donate as a sister to a brother. Their responses suggested that despite medical advancements, kin donations are still preferable, or less alien-seeming, than altruistic ones, which are also sometimes known within the industry as “non-directed.” The term is odd, and even bluntly problematic. Does a kidney transplant matter more if it is directed toward the safe harbor of a family member, rather than toward a stranger who is equally deserving and equally in need of medical attention and care?

***

Having passed through “final stages” of the qualifying process for donation—a euphemism for a series of forensic screenings with a renal psychiatrist to verify that I was not being coerced or financially remunerated for my “extraordinary gift”—I was put in touch with a woman, a friend of a friend close to my age, who had donated altruistically a few years before. She subsequently reinvented herself as a sort of transplant activist on social media. I read several of her posts describing her experience and watched an Instagram Live she had filmed on the topic before we spoke on the phone. One of the main things she wished to impress on me during our conversation was that I could ask the surgeon, as she did, to perform the keyhole surgery via a sideways incision instead of cutting straight across the stomach. The latter method, she told me, creates an unsightly pouch of skin that remains visible above the bikini line, whereas the sideways approach results in a less conspicuous scar. The next day, my vanity led me to make an inquiry. My request would be considered, my consultant told me. Later, when I raised the matter with a different doctor, he told me, “That isn’t how we do things here.”

***

In July 2022, my donor coordinator—a woman assigned to look after “my end” of the transplant—called to tell me that, in medical terms at least, my brother and I were ready for surgery. The doctors had given the go-ahead, and it was now down to us to settle on potential dates. Though my brother’s situation was acute, the timing of the operation needed to be viable for me as well, she said. Aware of the ad hoc nature of my work—I was hopping from one short-term contract to another, constantly changing cities, flats, and institutional affiliations—she did not want me to be “out of pocket,” or without sick leave, in the three months following the surgery when I would not work, and when donors might expect to be saddled with debilitating nausea, fatigue, digestive complications, heavy scarring, and even post-operation depression. She wondered whether it might be better to hold out until I secured a more permanent job. Meanwhile, a rotating cast of panicked relatives counselled me to “get it done,” as if my left kidney were a kind of festering and unresolved bureaucratic policy. Then I could “put it behind me” and move forward with my life. I could see the logic of both approaches: the impulse to delay until I could donate from a place of more stability; or the urge to do it since the ground beneath me was already so uneven. In the days of this oscillating, my brother was growing more and more unwell. He was thinner by the day, increasingly immobile. In the middle of a lunch of low-phosphates foods he could still eat that we were sharing in Borough Market after a long morning at the hospital, he received a phone call informing him that he could no longer forgo dialysis, his eGFR having plummeted to below 6 percent. “Sure,” he kept saying in response to this deluge of information, as the restaurant swam around us.

***

Mary Oliver has a poem about alligators, set in Florida, which frames its speaker kneeling “at the edge of a body of water” before a sizable gator comes “crashing toward her,” its tail “flaming like a bundle of swords,” its mouth “rimmed with teeth.” The persona recounts: “And that’s how I almost died of foolishness in beautiful Florida / But I didn’t.”

***

The easy story is that my decision to donate was pre-cognitive and totally instinctual: “not a shred of doubt,” it just felt right,” etc. It’s true that I did not feel hesitation, or second-guess myself in the instant when I volunteered for testing. I have always been susceptible to making myself useful, to fulfilling other people’s needs, and to giving even what I do not have. Still, donating as a sibling carries very different weight than donating as a parent. The urge to sacrifice one’s body for offspring is much stronger, or at least more culturally legible. Would it have been different if my parents hadn’t been immediately deemed ineligible to donate? In that case, might I have encountered my decision as more of an expansive choice, as opposed to something that I simply “had” to do, because I loved my younger brother?

The truth is more conflicted than a “gut decision,” and much of my internal motivation is opaque. The definition of acte gratuit is “a gratuitous or motiveless action performed on impulse.” Yet there is more to it than this. It’s possible I had some self-motivated desire to become a protagonist in this story. Or maybe I just wanted to live this alongside him, as a means of managing the pain.

***

At the time of writing this, there is every chance that the procedure might not happen. Though there is a team of people choreographing the transplant, I obsess over it not taking place due to my own possible withdrawal, the potential that I might “back out.” This is not a test that I can pass or fail, I remind myself. Still, when the fears seize me—What if I choke at the final moment? What if I retract my yes at the very instant that the anesthetic floods my veins?—I like to think myself into the future. I’ll be having a phone conversation or a coffee with someone in my position, I tell myself, on the other side. “It almost didn’t work out and I almost didn’t do it,” I’ll say. But it did, and I did.

Alice Blackhurst is a writer, academic and the author of Luxury, Sensation and the Moving Image.