Authors: Maylis de Kerangal
Tags: #Fiction, #Medicine, #Jessica Moore, #Maylis de Kerangal, #Life and death, #Family, #Transplant, #Grief
They’re speaking of their son in the present, this is not a good sign. Thomas goes on: I’m asking you these questions because if the deceased person, in this case your son, Simon, didn’t make his refusal known when he was living, if he didn’t express consent, we have to decide together what he would have wanted – “the deceased person, in this case your son, Simon,” Thomas raises his voice and pronounces each word distinctly, he drives the nail in. Consent to what? It’s Marianne who speaks, lifting her head – but she knows already, she wants to have the nail driven in. Thomas says: consent to organ recovery for transplants – it’s necessary to get through the brutality of these sentences unfolded like slogans on banners, necessary to get through their enormous weight, their bluntness – meetings where ambiguity lingers are creels of suffering, Thomas knows.
The tension mounts all at once at this point on the earth’s crust – it seems that the plant’s leaves tremble and the surface of the water shivers in the glasses, and it also seems as though the light intensifies, causing them to blink, and that the air begins to vibrate as though the motor of a centrifuge were slowly starting up above their heads. Thomas is the only one to remain absolutely still, doesn’t betray a single emotion, looks levelly at their faces wrung out by suffering, takes in the seismic quaking of jaws and the trembling of shoulders, dodges nothing – he continues: the aim of this meeting is to seek out and formulate what Simon would have wanted; it is not about asking yourselves what you would do, rather for us to ask what your son would have decided – Thomas holds his breath, he measures the contained violence of these last words, words that radically distinguish their bodies from that of their child, inscribe a distance, but words that simultaneously allow them to think. And Marianne asks in a weak voice, trailing: how can we know?
She’s asking for a method, Sean looks at her, and Thomas answers swiftly – in that moment he tells himself that maybe Marianne is, according to the expression he acquired during a training seminar, “the resource person”; in other words, the one who could create a wake effect – we are here to think about Simon, about the person he was; the process for organ donation always refers to a single individual, to our reading of his existence; we have to reflect together; for example, we might ask whether Simon was a believer, or whether he was generous. Generous? Marianne repeats, dumbfounded. Yes, generous, Thomas confirms, how he was in his relationships with others, if he was curious, if he went travelling, these are the kinds of questions we need to ask.
Marianne casts a glance at Sean, his face is undone, earthy skin and dark lips, then her eyes veer toward the green plant. She doesn’t make the link between the coordinator’s questions and organ donation, and finally murmurs: Sean, was Simon generous? Eyes scurry off into their corners, they don’t know what to say, breathe deeply, she puts an arm around the neck of this man with hair thick and dark like his son, pulls him toward her, their foreheads touch, and he lowers his head while a yes slips out of his tight throat – a yes that doesn’t really have much to do with their son’s generosity, because, truth be told, Simon wasn’t all that generous, he was more of a cat, egotistical and light on his feet, grumbling with his head in the fridge shit is all the Coke gone? More like that than a young man inclined to prodigious gestures, to thoughtfulness; but a
yes
that grasps the whole of Simon, raises him up to make him shine, this reserved and direct boy who devoured the intensity of youth.
Suddenly Marianne’s voice breaks through a breath and her phrasing, although halting, lights up: there is one thing, we’re Catholic, Simon’s been baptized. She stops short. Thomas waits for her to go on but the pause stretches out, and so he asks – a supporting wall – was he a believer? Did he believe in the resurrection of the body? Marianne looks at Sean, still sees only his inclined profile, and bites her lips, I don’t know, we don’t often practise. Thomas stiffens – last year, parents had refused to have any organs retrieved from their daughter’s body – they believed in the resurrection of the flesh, and this mutilation would make any other form of existence impossible – and even when Thomas had cited the Church’s official position, favourable toward organ donation, they had remained firm: we don’t want to make her die a second time. Marianne rests her head on Sean’s shoulder and then starts to speak again, last summer he read that book about a Polynesian shaman, the coral man, I don’t know, he planned to go meet him there, do you remember? It was a book about reincarnation, Sean agrees with eyes closed, and adds, barely audible: to exert himself, that was something that counted for Simon, he was physical, that’s it, that’s how he was, alive in his body, that’s how I see him, nature, in nature, he wasn’t scared. Marianne takes a moment and then asks, uncertain: is that what it means to be generous? I don’t know, maybe – and now she’s crying.
They’re speaking in the past, the father and the mother; they’ve begun the telling of it. For Thomas this is a tangible step forward, the sign that the idea of their child’s death is slowly crystallizing. He puts the file down on the table, places his hands flat on his thighs, opens his mouth to continue, but suddenly, though there was no way to see it coming, everything topples again, a rogue wave – Sean has stood up abruptly and is pacing back and forth across the room, agitated, saying sharply, all this talk about generosity is bullshit, I don’t see how the fact of being generous or travelling gives you the right to think that he would have wanted to donate his organs, that’s too easy, and if I tell you that Simon was selfish does this meeting end here? Suddenly he steps right up to Thomas, growls in his ear: just tell us, buddy, if we’re allowed to say no, that’s all I want to know. Marianne, shocked, turns to him, Sean! But he doesn’t hear her, has straightened up again, strides back and forth in the room, faster and faster, and finally presses his back to the window, dark and massive against the light: go ahead, tell us the truth, can we refuse or not? He breathes hard, like a bull. Thomas doesn’t blink, spine straight and hands moist against the fabric of his jeans. Marianne gets up and goes to Sean, she reaches out her arms but he turns away, three steps along the wall, quick spin and he punches the plaster with all his might, the glass trembles over the Kandinsky poster; he moans, fuck, this is not happening, and turns in devastation back to Thomas, who is standing now, white as a sheet, stock still, and says firmly: Simon’s body is not a warehouse of organs you can just lay your hands on. The process stops if the interview with the family to determine the deceased’s intention leads to a refusal.
Marianne finally takes hold of Sean’s hand, that wasn’t very smart she murmurs as she caresses it, as if we needed this too, she pulls him toward the couch, the couple sits down again, forms again, it’s a lull, each of them swallows a glass of water even though they’re not really thirsty, but it’s important to temporize, to keep moving, to come back to the frequency of a few words that are possible.
At that moment, Thomas thinks it’s over. Too hard. Too complex, too violent. The mother maybe, but the father … No distance, everything’s going too fast. Barely grasped their tragedy and already they have to conceive of organ donation. He sits down again in turn. Picks up the file from the table. Wouldn’t dare insist, influence, manipulate, play the authority, wouldn’t dare become the agent of some silent blackmail that is all the more weighty, all the more pressing because young, healthy donors are so rare. Will spare them, for example, from hearing that, in cases where someone is not registered with the national registry of refusals, French law holds the principle of presumed consent – will spare them from having to ask how presumed consent can be the rule when the donor is dead and cannot speak anymore, can’t consent, will spare them from hearing that having said nothing while he was alive was the equivalent of saying yes, or some other version of the dubious proverb “silence signifies consent,” yes, he won’t mention the texts that would have so easily pulverized the meaning of this dialogue, made it a simple formality, hypocritical convention, while the law concludes this other, more complex notion that has to do with reciprocity, exchange: if each individual was a presumed potential receiver, after all, was it so illogical, so unfounded, that each person should be seen as a presumed donor after their death? From now on, he won’t bring up the legal aspect unless it’s to open a possible way for those who have no particular connection to the concept of organ donation, or to comfort families in their decision – the law ultimately supports them like the handrail supports the hand.
He closes Simon’s file and places it flat on his knees, signalling to Sean and Marianne Limbeau that they can adjourn if they wish, leave the room. It’s a refusal, it happens. You have to know how to accept it – the possibility of refusal is also the condition of donation. They must say goodbye now, shake hands. The meeting was a failure, okay, he has to accept it, Thomas has adopted the principle of absolute respect of the family’s decision, and also understands this indisputable aspect – the body of the deceased is sacred for his loved ones – a way of inscribing abutments in a process that runs the risk, bolstered by the law and the shortage of organs, a way of plowing through. His eyes sweep the walls of the room; outside the window, a bird watches. A passerine bird. Thomas is surprised to see it, wonders if Ousmane will stop by his house to feed Mazhar, the goldfinch, refuel it with clean water and organic seed, those multicoloured seeds cultivated on a balcony in Bab El Oued. He closes his eyes.
Okay, what are they going to take? Sean starts up again, head down gaze low and Thomas, surprised by the change of tack, frowns and immediately adjusts to this new tempo: they would be retrieving the heart, the kidneys, the lungs, and the liver; you’ll be informed of everything if you consent to the process, and your child’s body will be restored – he listed the organs without wavering, with this same momentum wherein he always prefers sharp precision over the vagueness of evasion.
The heart? asks Marianne. Yes, the heart Thomas repeats. Simon’s heart. Marianne’s head spins. Simon’s heart – little islets of blood cells meet in a tiny sac to form the initial vascular network on the seventeenth day, the pump begins on the twenty-first day (minute contractile movements that are nevertheless audible with extremely sensitive equipment, designed for cardiac embryology), blood flows into conduits as they are formed, innervating tissues, veins, tubes, and arteries, the four chambers develop, everything in place on the fiftieth day even if it’s not complete yet. Simon’s heart – little round abdomen that rises slightly at the bottom of a playpen; the bird-of-night terrors panicking inside a child’s chest; the staccato drum accompanying Anakin Skywalker’s destiny; the shot beneath the skin when the first wave rises up – touch my pecs he’d said to her one night, muscles tensed, monkey grimace, he was fourteen and had the new shine in his eye of the boy finding himself in his body, touch my pecs, mom; the diastolic melting when his eyes catch Juliette at the bus stop on the maritime boulevard, striped T-shirt dress, Doc Martens and red raincoat, sketchbook tucked under her arm; holding his breath among the bubble wrap on Christmas Eve, the surfboard unwrapped in the middle of the icy workshop, opened with this mix of meticulousness and ardour, the way you open the envelope containing a love letter. The heart.
But not his eyes, they won’t take his eyes, right? She stifles her cry with a palm pressed against her open mouth. Sean shudders, gasps, what? His eyes? No, never, not his eyes. His moan slowly dies in the room where Thomas has lowered his own eyes, I understand.
It’s another zone of turbulence, and he shivers, swimming, he knows that the symbolic charge differs from one organ to the next – Marianne, after all, only reacted to the idea of retrieving the heart, as though removing the kidneys, the liver, or the lungs was easier to imagine, and in the same way she had refused the removal of the cornea which, like the tissues and skin, the family rarely agrees to – and understands that he must compromise, let go the rule, accept the restrictions, respect this family. This is empathy. Because Simon’s eyes are not just his nervous retina, his taffeta irises, his pupils of pure black, crystalline – they are also his gaze; his skin isn’t just the threaded mesh of his epidermis, his porous cavities – it’s his light and his touch, the living sensors of his body.
– Your child’s body will be restored.
It’s a promise and perhaps it’s also the kibosh on this dialogue, hard to say. Restored. Thomas looks at his watch, calculates – the second thirty-minute electroencephalogram will happen in two hours – would you like to take some time alone? Marianne and Sean look at each other, nod their heads. Thomas gets up and adds, if your child is a donor, that will allow others to live, other people who are waiting for an organ. The parents pick up their coats, their bags, their movements are slow even though they’re in a hurry to get out of here now. So he won’t have died for nothing then, is that it? Sean turns up the collar of his parka and looks him straight in the eye, we know, we know all that already, transplants save people, the death of one person can give life to another, but – this is Simon, this is our son, do you understand that? Thomas, quietly: I do. As they pass through the door, Marianne turns and looks him in the eye: we’re going to get some air, we’ll be back.
Alone in the room, Thomas collapses into his chair, his head topples into his hands, his fingers plunge beneath his hair, into his scalp, and he breathes for a long moment. He must be telling himself that it’s hard, and maybe he, too, would have liked to talk, punch the walls, kick the garbage bins, break some glasses. It might be a yes, more likely a no, and, it happens – one-third of meetings end in refusal – but for Thomas Remige, a clear refusal is worth more than a consent torn from someone in confusion, delivered with forceps, and regretted fifteen days later when people are ravaged by remorse, losing sleep and sinking in sorrow. We have to think of the living, he often says, chewing the end of a little match, we have to think of the ones left behind – on the back of his office door, he had taped a photocopied page from
Platonov
, a play he’s never seen, never read, but this fragment of dialogue between Voynitsev and Triletsky, found in a newspaper left lying around at the laundromat, had made him quiver the way the child discovering his fortune quivers, a Charizard in the pack of Pokémon cards, a golden ticket in the chocolate bar. What shall we do, Nicholas? Bury the dead and mend the living.