Agathe's Summer

by Didier Pourquery

  I can picture Marc, though, the look in his eyes through his glasses. Marc has a beard but he isn’t one of those people who speaks into his beard. His eyes are piercing and his words sharp. He’s the head honcho in lung transplants for kids with cystic fibrosis. His kids. He saves many, battling this tenacious disease with unwavering determination.

  He’s also a good friend, attentive and caring. When Agathe can’t deal, he can be a little harsh, but with tenderness mixed in. This morning he has something to tell her.

  I’ll never know the exact effect his words have on this twenty-three-year-old young woman, hardened by disease, and yet still so fragile at the same time. Someone is telling her she will soon die. It is a death sentence. Or rather a death certificate. A death certificate drawn up in advance. You are going to die.

  In that month of June 2007, Agathe weighed next to nothing. She and her “colonized” bronchial tubes had been devoured by the pitiless bacteria that had taken hold of her body, resistant to ever more powerful antibiotics. She was living with an alien invader that was relentlessly attacking one organ after another. These bacteria had invaded her newly implanted lungs, her second wind, that hope for a third life.

  Twenty-three years old. A life of struggle, of joy, of … vibrancy. That is the only word I can use to describe it, vibrancy. How else to explain that energy, that life force, that endurance?

  And also the head-on pitiless realism. For the past twenty-three years, she was the author of her own life story, going so far as asking Marc to tell her when her time was up, to avoid any drastic last-minute intervention. No machines, no pointless tinkering. That she be given warning that she will die so she can stare death in the face. That’s what she’d asked him. It was their pact.

  And so he told her.

  “We can’t contain your gladioli.”

  I imagine those were the words he told her.

  “We just can’t anymore, it’s spread everywhere.”

  She looks at him and says, “So?”

  I try to imagine it.

  “We can’t anymore,” he repeats. The bacteria, “your” gladioli, your alien has won. It made a hole in the bronchial tubes and from one moment to the next there could be a rupture, a …

  I suppose this kind of conversation is first laid out clinically, the description, “the picture,” as the doctors call it. Agathe knows these medical terms by heart; her first hospitalization was at the age of nine and since then, illness has followed her every minute of her life.

  She listens.

  He came alone this morning, without the nurses, it must be serious …

  I get the text at 11:09 when I am in the street, just leaving a bakery near my office, on rue Pasquier. It’s a German media company, and we were preparing to launch a mass-market daily newspaper, a French version of Bild. But the project is having a hard time taking off, like me. I’m in limbo professionally. My friend Laurent Joffrin wants me to come with him to Libération. About this, too, I am lost. I’ve started smoking again. I’m eating badly. I’m working in fits and starts. But I keep on going.

  I read her text and I go numb. She knows now. It’s all become that much more real.

  How to keep on thinking? I get a lot of messages from friends, phone calls, “How is she doing?” I don’t know what to say. “Things are bad, very bad, we have to be strong.”

  Despite last night’s announcement, the talk with Dominique, her text catches me off guard. One hour earlier, at 10:13 to be exact, she had emailed me an excerpt from a Quebéquois TV series, Têtes à claques, that had us laughing out loud. Under the video entitled “The Body Toner,” she had written the caption: “Did you see this video clip from Têtes à claques? I think I’m going to watch one every day, laughter guaranteed!!!” Signed: “Your little Agathe.”

  And then this text arrives an hour later.

  In the weeks that followed, the two of us kept sending each other clips from Têtes a claques. Yes, they did make us laugh. That’s something she’d always needed: Her ferocious laugh, her devastating sense of humor, her quick wit, were all fed by a multitude of pictures, stories, texts, not always very highbrow. The stand-up shows of Bigard, the fake classified ads of Élie Semoun, the trashy depths of Jackass, not to mention the idiotic dialogue of reality TV. As soon as she found something that might make me laugh, she shared it.

  I’m on the train to Suresnes, the hospital, just like every day. In the train car a violinist is playing a very sad Irish tune. Everything is gray. I know this journey by heart, every marker, every house, every hillside with an incredible view of Paris. It’s the Saint-Cloud line. My mother used to live here. She died. Another daily agony. Same line; same train.

  … the first time we spoke about your gladioli, Agathe, you were barely ten years old. It was early summer 1994. Up until then, your life seemed to be going smoothly. Respiratory issues of the usual kind, just more frequently, strong antibiotics, more and more meds to help with your digestive issues … but you were such a force of nature, always living life to the fullest, so funny, and quick, that we would forget …

  Where did you catch this bacteria? In a public swimming pool? In one of those water parks you love so much? The city is full of traps. A child of the Pigalle neighborhood, of the Rue de Chaptal school, of the Jules Ferry junior high school, of the Carrefour Pigalle Victor Masse, you lived amongst the tightly packed buildings, sex shops, and guitar shops. Not much greenery. Your great joy was going to the swimming pool, going to the parks, to the country, and to the island of Oléron. Especially Oléron. We spent all our vacations there. There was a lot of family there, picnics, the beaches, going out at night to shows with the cousins, eating mussels grilled beneath the pine needles. Till the end of your life you posted photos online of your dear Atlantic island we moved to when you turned fourteen. It was in 1994, in fact, at Easter, that we began talking about moving there, watching your three faces, Émilie, Clarisse, and you, so happy on those beaches and dunes.

  But at Porte des Lilas, in Paris, in this beautiful month of July 1994, we had to move quickly. At the Robert-Debré hospital, the doctors were insistent: Agathe must have her first intravenous antibiotic course, the pills aren’t enough anymore. Time to wage war. This bacteria must be contained immediately. Agathe coughed a lot and was tired. She had finished the school year exhausted, even though she had shone in the end-of-year performances in theater and dance. She was burned out and it worried us. We negotiated with the team at the Robert-Debré hospital to make it possible for her to undergo the treatment on Oléron, at the Saint-Trojan “heliomarin” center, the very one Sabine’s uncle used to head up. At his insistence, the doctors agreed, on the condition that she start the treatment in Paris, over four days.

  We heeded the warning: this cure is the “first.” Agathe was entering a new phase of her life. What would come next? Would there be many more? Her doctor often mentioned these hospitalizations but we hadn’t wanted to think about them. Now, here we were.

  We didn’t think about it. We lived one day at a time. Our great obsession that early summer of 1994 was to ensure that Agathe, despite it all, had a great vacation on her cherished island.

  The doctor at the heliomarin center was good. He had set her up in what he called “the director’s room,” pavilion 24. It was like a small house just feet from the beach, slightly removed from the other buildings. Two rooms, one for her, one for us. Sabine and I took turns spending the night by her side. She would receive three infusions every twenty-four hours for a month.

  I remember the smell of that summer. The distant stench of cold cafeteria food in the pavilion, the smell of drugs, and, above it all, the smell of pine trees roasting in the sun.

  As usual you quickly took charge. You set up a routine. The nurse arrived, looked for a vein in your slender arms, hooked you up to the drip, waited a few minutes, and then left. You joked with her, “you have the heebie-jeebies” as you put it, and then you asked us to play cards with you. You’d always had a p
assion for card games. Your favorite game, that summer, was Speed. And with you it has to be fast. You made fun of me as I forgot one or the other rules of the game, and decidedly lacked speed. Slap slap. You won every time.

  At nightfall, after you got your dinner tray, you got ready for part one of the night, the 2 a.m. drip. I settled down at the small table in my room, fired up my computer, and got to work under your watchful eye. I had the feeling it was you who was looking out for me.

  I was working on the daily installments of an old-fashioned financial thriller for the daily La Tribune, where I was editor-in-chief. I churned out the episodes as they appeared. In the morning, I sent them to the newspaper. You liked that routine too. Every night, when I came to kiss you good night, you said, “work hard, Pops, you’ll let me know what happens, right?” At 2 a.m., when the nurse arrived, she found me still writing, which made her smile, and then she hooked you up to the drip. You would wake up and ask groggily, “Is it coming along?”

  Yes, my Agathe, it’s coming along. I feel lifted up by your presence. Of all my memories of writing, this is the most precious. I had an easy time writing the ten pages a night. Then came that time, around 3 a.m., when I shut down my computer and headed outside to smoke a cigarette near the beach behind the house, in the calm of the pine forest and the lapping waves. I shivered and went inside, checked that the drip was working, and watched you sleep, your eyelids not quite closed. Sometimes I kissed your forehead lightly, or caressed your long hands. Then I finally went to bed. Just next door.

  What would I not give to have those moments back.

  SATURDAY, JUNE 23, 2007

  I write nonstop, all day, in my diary, in notebooks. I send texts to friends, dozens of texts to my lover, Juliette. This morning I write, “Agathe is giving us lessons in courage.” Those who know her say that often.

  Meanwhile, this spring of 2007, since her Valentine’s Day transplant, I’ve been able to grasp what a life of pain means to her. A life of discomfort, of restriction. I have seen her hooked up to tubes, wires, and watched as she received a tracheotomy, a hole in her throat to be able to breathe a bit better. I’ve often seen fear in her eyes, or when she writes on her chalkboard: “I’m freaking out,” she writes when she can no longer speak. She is trying to pull through, advance despite the suffering, overcome the dizzying obstacles.

  To be disconnected from the machine that breathes for you and to use your own lungs for the first time, your newly implanted, secondhand lungs. How to even fathom this leap into the unknown. What made it so much worse this time was the memory of the first time they unplugged the machine following the first lung transplant in 2002. Agathe tried to put it off for as long as possible, but at some point they had to do it, and she panicked.

  Her eyes rolled back.

  It was like a second birth, this time violent. But a few hours later, there was a victorious look in her eyes as she sat like a queen in her armchair for around twenty minutes, staying seated in order to help her new lungs unfold and expand. Her gaze was victorious but worried. Nothing is ever a total victory, she seems to tell us again and again, we who rejoice at every step forward, every improvement, even the most minute.

  “Are you feeling a bit better, Agathe?”

  What a stupid question, asked a thousand times. When she’s rested and in a good mood she says yes, and moves on to something else. When she’s in pain, still injured, forever uncomfortable, she looks up and sighs.

  “What do you want me to say?”

  There are happy moments too, when she can make it up and down the hallways. The first steps post-op. That, yes, that’s real. She can stand up and walk, leaning on the arm of the kinesthesiologist, so enormous compared to her, as he encourages her forward.

  I do not know if one should speak of courage. Perhaps more of an assortment of moments when she has enough rage to fight on, and of others, when she succumbs to bitterness. It’s a prism of ways in which she sees herself. An insatiable curiosity about what surrounds her, and a keen sense of irony. Some people have that certain sense of humor that removes them from the depths of despair, that helps them resist. Agathe had an enormous reserve of ferocious humor, and from that she drew the strength to face the unknown. It helped her keep going.

  The day after Dominique and Marc’s pronouncements, we were all exhausted, emotionally and physically. This anxiety, these unanswered questions, this uncertain reverse chronology was killing us. And yet, we spoke normally. We stuck to the routine put in place after her transplant. Agathe set the tone. And the tone of that day was oddly lighthearted.

  Saturday, June 23 was the season premiere of Secret Story, a new reality show. Agathe told us what it was all about. And then she watched, deeply curious. She and her younger sister Clarisse commented on how so-and-so looked, or on their accent, declared it was crap but nonetheless stayed glued to it. She had started loving Big Brother as early as spring 2001, like many other French children her age, and also of course Star Academy.

  In this particular hallway of the Foch hospital, Star Academy had a particularly devoted fan base. It was here that the little prince of the talent show, Grégory Lemarchal, had been treated. And it was here, in a room apart from the others, that he died, on April 30. Barely two months ago. Grégory was one year older than Agathe. He was waiting for a lung transplant that never happened. The winner of the 2004 contest had it all: he was athletic, talented, in love, game for anything, and tenacious. His death affected Agathe deeply and happened just after her own lung transplant, when she herself was struggling with the after-effects of the surgery. She admired Grégory as a comrade-in-arms and hospital buddy. Even if she didn’t like how much they dwelled on his illness.

  In all those years of hospital stays, those hundreds of days in antiseptic and sad rooms and hallways, she always sought to become close to others, to get to know them, to help them in any way she could, whether they were the old ladies with respiratory troubles (that happened once), the girls her age, or the babies.

  … The 20th of November, 1996, you are twelve years old. You are admitted to the Robert-Debré hospital for an intensive round of antibiotics. You know the place well by now, and are as comfortable here as one could be. You complain because it takes so long, three weeks, because you have to move around hooked up to a drip all the time, because some of the nurses have trouble finding the veins (“Oh no, it’s Jacqueline in charge of me today, help, Pops, she’s so clumsy, nice, but she has butterfingers”). You are a keen observer always on the lookout, and you know the story of everyone along the hall, they are all your “gossip buddies” as you call them. You are the chatterbox who livens up the boring hospital with a compassion that knows no limits. People who seem alone, or abandoned, sadden you. “Outside,” too, on the street, you have trouble with the image of people alone. You find it endlessly sad that someone would eat alone in a restaurant (“Oh, poor thing, look at him, alone at his table”) and we have to explain to you that no, it’s not necessarily sad, it’s life.

  At Robert-Debré that fall of 1996, there is a tiny baby, Ahmed, alone in his room. You are shocked: No one comes to visit him. His parents live too far away. You find this “completely unfair, and so sad.” And so, pulling your drip along behind you, you go see him and tell him stories. You speak from behind your gauze mask, and try to make him smile. As soon as we arrive in your room you give us the latest news on the little Ahmed. “He’s so adorable, such a cutie-pie, come see him.” So we find ourselves at the side of this lonely baby you love so much. “The poor sweetie-pie, can you believe it, no one comes to see him, ever, you have to talk to him, go on …”

  A few days later you discover a wing of the hospital with other children that no one seems to take any interest in. Some are not even picked up when they are free to go home. They are stuck hanging out in the hospital playroom, or trailing in the hallways. This saddens you and makes you mad. “That poor kid …” is a complaint we hear hundreds of times coming from your mouth.

 
; In the fall of 1996, I worked too much, as always. I was the editor-in-chief of VSD magazine, and was endlessly reworking the layout of the pages of the new design for the weekly. Every night, no matter the hour I went to visit her. Agathe would first ask me how “the paper” was going before telling me about little Ahmed, or telling me the latest gossip she’d found out in the hallways.

  But that particular night, a Thursday, I was surprised to find her comfortably propped up by pillows, a little queen reigning over the nurses and aides sitting on chairs or on the edge of her bed, all eyes glued to the TV, the only light in the dim ward where everyone else was asleep.

  “Hey girls, how’s life?”

  “Hi, Pops, sit with us, we’re watching ER.”

  “ER? Are you serious? You’re not tired of hospitals?”

  One of the nurses looks sheepishly up at me.

  “We don’t really have a choice. We told her the same thing. But Agathe insisted we watch ER.”

  “A total must,” she confirms, “Doctor Ross is just too gorgeous!”

  Ever since this series arrived on French screens in the summer of 1996, George Clooney has been all the rage. Agathe didn’t miss a single episode. Her favorite nurse reminded her that to see ER all you had to do was walk the hallways of the hospital, or look out her window onto the courtyard below which is exactly where the ER is, but she didn’t want to hear it. Besides, her power of persuasion was so strong no one could say no to her.

  So I sat down in the company of all the white robes and together we followed the every move of the handsome Dr. Ross. And so the time would go by, marked by the rhythm of Agathe’s cough.

  SUNDAY, JUNE 24, 2007

  After a comforting lunch with friends in a garden in Sèvres, I biked back to Foch. It was a summer Sunday, and life goes on. Today there’s tea with Sabine and the three sisters, Émilie, Agathe and Clarisse. A real high tea with finger sandwiches and fresh petits-fours. A time to laugh at things big and small, to laze and have a smoke in the garden-parking lot of Foch. It feels normal, relaxed. The fragmented family is coming back together. Agathe loves it when the whole Pourquery clan gets together. I take photos of my girls sitting on a bench against the backdrop of the gray hospital concrete. I’m careful to keep Agathe’s drip out of the picture.