Agathe's Summer Read online

  To Sabine, Clarisse, and Émilie

  Copyright © 2018 by Didier Pourquery

  Copyright © 2016 Editions Grasset & Fasquelle

  Originally published in French as L’Été d’Agathe

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  Library of Congress Cataloging-in-Publication Data has been applied for.

  Cover design by Erin Seaward-Hiatt

  Cover photo credit iStock

  Print ISBN: 978-1-5107-3479-1

  Ebook ISBN: 978-1-5107-3480-7

  Printed in the United States of America

  “Why Don’t You Send Me Signs of Life Anymore Now That I’m Dead?”

  —J.B. Pontalis

  Le Songe De Monomotapa

  THURSDAY, JUNE 21, 2007

  I received the results. They’re not good.

  Dominique speaks softly as she opens a folder on her desk. It’s 8:30 at night. The hallways are quiet. Sabine and I have spent all afternoon at the hospital waiting for this meeting. In hospitals, that’s what the parents of sick patients do. Life is one long anxious wait. We have a lot of experience in the matter.

  Agathe had a CT scan yesterday, and a fibroscopy today. On the phone with Sabine, one of the interns mentioned a fistula in the region of the trachea and lungs. She told me this as we waited for Dominique. We didn’t completely understand what it meant, but we sensed something was very wrong—the intern had put an emphasis on the words—“it’s very serious.”

  Agathe too can tell something is up; this morning she called Sabine to ask her to come spend the day with her at the Hôpital Foch.

  Dominique speaks to us in a small corridor-shaped room, crammed with computers and binders, where the heads of departments come together to give each other instructions and discuss treatments. With her short brown hair, her soft gestures, her direct and intent gaze, Dominique personifies competence. A renowned pulmonologist, she is in daily contact with young people who gasp for air, who fight for their every breath. Her humanity is put to the test daily. Her warmth reassures, as does her determination, even as she says the words she must say.

  “… the bacterial infection is very serious, her gladioli …”

  An old acquaintance, Burkholderia gladioli colonized Agathe in 1994 and has grown stronger over the years, despite two lung transplants. This bacteria, her bacteria, settled in, developed, proliferated …

  And now it is impossible to contain.

  “… the infection has caused a fistula in a bronchial tube that is expanding quickly. From one day to the next this hole could cause a vessel to burst, which would lead to internal bleeding. There is no surgery or fibroscopic procedure to prevent it.”

  Dominique uses precise words, as if to leave no unnecessary hope. We know her. We trust her. Over time, she and Marc, the head of pulmonology, have acted as true supports for us, and as friends to Agathe. Listening to Dominique, we are forced to face the reality: there is no escape hatch. We stare at her as if there were some new element to come that would reopen the door. We remain transfixed: we hear what she is saying, but we have deployed the shields, our protective gear against acceptance. Behind it all a little light flickers: Agathe’s life.

  Refusing to face reality, and its accompanying consequences, had become our stubborn and perfectly attuned defense mechanism over these past twenty-three years. Confronted with Agathe’s life expectancy, Sabine and I always held onto the unwavering belief that the sheer force of life would overcome it all. Right up till the end.

  One week earlier, Friday, June 15, 2007, when Agathe was rushed into the OR, and then returned to her room, all I wrote in my journal is this: “5:30 pm. We just learned that Agathe is out of the operating room. They think it’s an infection, or an abscess, it’s not a rejection, I’m reassured.”

  Reassured!

  The next day I continue: “Agathe is irritable, tired, and is having a bad reaction to the six antibiotics. She is going through a rough patch.” That’s it, no more. Life goes on.

  But it is true that Agathe’s second lung transplant four months ago ushered in a new era. Everything became more difficult afterward, more trying, heavier. We watched Agathe fight and flail like never before. This second transplant that she had waited so long for, and welcomed with such joy on Valentine’s Day, was not going well, we could tell. Each step forward was met by one step back, each remission met with doubt within a matter of hours. Everything seemed in flux, and every last thing worried us. Reality was catching up with us. We were having more and more trouble maintaining the delicate balance of optimism and denial that had kept us going for so long.

  Dominique knows all this. So she very clearly states that this is the end. The doctors can do nothing more for her.

  There’s no hope, no way out: nothing-to-do-for-her.

  We quietly absorb: there’s nothing more they can do for Agathe. They cannot save our daughter, the one we have watched live, laugh, suffer, and struggle for almost twenty-three years.

  It all began the summer of 1984. Her first summer, and already, a hospital. In the emergency room at Saint-Vincent de Paul in Paris, a new doctor has issued a new sentence: cystic fibrosis. We didn’t know anything about this illness. Not even how to spell it—where to put the “y.”

  Dominique explains once again what is happening to our daughter’s bronchial tubes. Details. Precisions. We are paralyzed, our questions barely form, like shreds of silence between two question marks. Now we’re barely listening. We just want to see Agathe, be near her. Nothing more.

  Agathe watches us calmly as we enter the room, her eyebrows raised. The TV is off. She frowns when she sees Dominique: She doesn’t like us to be in touch with her doctors when she’s not around. She wants to be in the know, to be in control, and hates it when we are overprotective. She always says it like it is, and asks in return that we not lie to her. Agathe is studying psychology, and has been in analysis for two years. She has developed a way of cutting to the chase on any subject, with complete lucidity. She wants to remain in control and know everything that has to do with her. Everything.

  This evening, as we enter her room, she seems strangely serene. What does she know? What is she feeling? These past few days she has spoken about death quite often with the nurses, as well as with Sabine. She told the nurses several times that she didn’t want to die here, in the hospital. She hasn’t spoken that much about this with me, or else rather in a cheerfully defiant way.

  “If I am going to die, you know what I want to do first? Go to Oléron and stuff myself with oysters and seafood. You will take me there, won’t you, Dad?”

  As for me, I act the part. I tell her to stop talking nonsense. Yes, it’s true, seafood would be great. And then we move on. It’s almost as if she’s trying to spare me.

  At times, though, the silent anguish creeps up on her. She gets these lost looks she can’t hide. I notice.

  Tonight, we are gathered in her room with Dominique, and s
he seems calm.

  “I just watched a new series, Dexter, one of those gory ones, with serial killers. Not bad.” She says it without conviction. She waits. It’s late, and then she sees the three of us walk into her room. Something is different. Dominique sits down on the edge of her bed.

  “Agathe, I told your parents that …”

  She only tells her part of the truth. It’s serious, hence the cocktail of antibiotics. But it’s complicated. It won’t be enough. Agathe listens, doesn’t ask any questions. Dominique pats her hand and leaves us alone. Agathe watches her leave.

  She turns towards us. That look … We talk about the antibiotics. How is she recovering from the fibroscopy? She’s not in too much pain? No, she says, just some discomfort. Here. She touches her sternum. We quickly run out of things to say. So she asks us to leave, she’s tired. She says, “I love you,” just like every night.

  Sabine and I are silent in the car. I attempt to return to the usual words we say: we must stay strong and upbeat. I say these things all the time, the expressive and optimistic Boy Scout. In the family drama playing itself out, that’s my role, absurd as it sometimes is. Sabine, for her part, sustains her daughter with a mix of tenderness, patience, determination, and make-believe fantasy. Agathe understands this distribution of roles. She doesn’t fall for it, but it reassures her.

  Sabine drops me off in her neighborhood, Montparnasse, and I take a taxi home from there. The cab inches its way through the streets filled with people happily dancing. The driver says it’ll take a while. I couldn’t care less. I’m in no hurry. I’m going over Dominique’s words in my head.

  It’s June 21, 2007, the city-wide annual music festival. Alex, Agathe’s boyfriend, is out tonight. He needs a break. It’s been tough on him. He needs some fresh air. To be outside. Agathe keeps him at a distance to protect him. And she needs to be alone. I picture her in her room. Is she asleep? What is she thinking right now, her father sitting in a cab, her mother at home, and her boyfriend out carousing in the streets.

  I am numb, overtaken by a dull pain. The same words loop through my mind, as if to protect me further, “I don’t get it, I don’t believe it.” It was as if I were speaking to someone else. “It’s not possible, no, not possible.” This old refrain throws me back twenty-three years.

  … The 15th of August, 1984, a Wednesday (I know that means nothing, but it’s a fact that sticks in my mind: you were born on a Wednesday) you came into the world at 2:40 a.m. at the Pithiviers hospital. Doctor Odent and his team attend the birth, the Leboyer method, with the lights dim, the room calm, in a bath. There are cushions everywhere and midwives murmuring, encouraging your mother. This is how it began for you, in gentleness. We were obsessed with the idea that your arrival on earth be as natural as possible, the least medicalized. Everything must be gentle. A birth, we believed, is not an illness. And so it went. You were born in peace, in a hospital filled with puffy cushions and plastic pools, dimmed lights, and warm smiles. Tenderness was everywhere.

  Two days after her birth Agathe was transferred to a Parisian hospital lit up like a dentist’s office and put into a plexiglass bubble, plugged in, “monitored,” with a tiny catheter stuck in a vein on her shaved temple: that image is forever seared in our memories. The mark from the insertion lasted several weeks. Her hair was shorter just above her ear.

  We didn’t recognize her right away. We didn’t see the link between the baby born in Pithiviers in the protective dim light and this little injured creature, pinned to its mattress. Sabine wanted to take her home. She argued, demanded, fumed: the tigress who wouldn’t let anyone touch her cub. Agathe was asleep under the bright light. We attached her stuffed-animal parrot above her head. The parrot had a music box inside it. She kept it for many years.

  In the time between the puffy cushions of Pithiviers and this bubble, she has had an intestinal obstruction, a battery of tests, and an unforgiving diagnosis: cystic fibrosis.

  Then there was the race in the ambulance to the Saint-Vincent de Paul hospital at Denfert-Rochereau.

  The 15th of August fell on a Wednesday that year. Christophe, who was doing his military service at Blois, obtained a furlough. He wanted to see you right away, to be the first. To savor the simple joy of a birth, to hear the words one hears in these moments, “Yes, all went well, even if it took forever, of course she’s the first … no she hasn’t been hungry, she isn’t feeding, not yet … also we don’t really understand why she hasn’t had a bowel movement, her diaper is empty … look at how tiny she is.” You were so pretty, my Agathe, calm, and not all shriveled, thanks to the gentle birth. It was like getting a diploma in bourgeois liberal conscience: A Gentle Birth.

  We often told you the story of your birth, my Agathe. Each time you would say, “But Pithiviers is so far from Paris, what were you thinking?” You wanted us to recount the adventure, the car that wouldn’t start, while in the meantime Sabine’s water broke in a phone booth in Montparnasse, my race to get my mother’s car, and … Every time you listened to the story of your arrival into the world with a mix of pleasure and disdain. Good Lord, what irresponsible parents to choose a maternity ward 100 kilometers from Paris! Deep down I knew you loved it though, my angel, you didn’t come into the world like just anyone, no way! To be a Parisian born in a trendy hospital in Pithiviers made you quite proud.

  At Saint-Vincent de Paul, three days later, I stood gazing at her. Sabine had left, she had had enough. She wanted to hold her little girl in her arms, but that wasn’t possible. Agathe was on her back, tied down, attached to IVs for hydration and nutrition. They said it would only be for a few days. An eternity.

  After the gentle birth, Agathe’s movements were not abrupt in the midst of the tubes and wires. Her restricted movements were graceful. I think of her sister Émilie, born by C-section six years earlier, premature. Ever so tiny, she also spent time in an incubator. I would feed her at the hospital at Porte de Vanves with her mother Agnes’s breast milk, as she was still in the clinic in Passy. In her incubator Émilie also made those slow movements. As half-sisters, Émilie and Agathe had a father in common, a random genetic similarity, and that same entrance into the world, of going from a non-medicalized birth to a highly medicalized incubator.

  From inside her bubble, little reflexive smiles emerged on Agathe’s face, despite the tubes and wires. I found myself admiring her strength already. I believed in the overarching power of life.

  One week after Agathe left the hospital, we were in the pediatrician’s elegant offices in the Marais. She wanted us to understand what to expect for Agathe.

  “We are all going to die some day, right? Well, Agathe will die a little sooner than the rest.”

  Sabine didn’t wait to hear more. She put Agathe straight into her stroller and walked out, never to return. We found a new pediatrician. Agathe was an amazing baby. So lively and aware. A little thin and small, but she would grow, of that we were sure. She was beautiful. All is well. All is well.

  And yet, one couldn’t say that the story ends there, nor that we stayed in the all-is-well mode for long. As luck would have it, one of Sabine’s uncles, Dr. Georges Simon, is one of France’s top specialists in cystic fibrosis. He had been the director of a clinic that treated children with the disease at Saint-Trojan on the island of Oléron, where Sabine’s family comes from. Now retired, he still kept up with the conference circuit and was in touch with various associations. Uncle Georges wanted to help. He told us all about the disease. Probably more than we wanted to know. We filtered what he said. All we could see was Agathe’s smile and her bright eyes. And yet, in the flow of words he uttered, some words stuck with us: life expectancy of twenty-five years on average, followed immediately by the words “advances in the research,” the very progress that would little by little “improve her quality of life” and, who knows, perhaps give her a few extra years to live. We heard what Uncle Georges had to say selectively, when we were up for it. He helped us, made our lives easier in subtle ways. H
e could gauge our mood. We refused to join the association of parents of the “cystics.” For years we steered clear of all of it, only from time to time picking up some pamphlets at the hospital. Our minds were made up: Life would triumph. And in any case, other than the pancreatic enzymes we added to her bottle, a few other meds, and her kinesthetic breathing therapy, Agathe’s day-to-day life was normal. Nothing indicated she was sick. Or so little.

  In this taxi stuck in traffic from the music festival, I think back on all of our evasion tactics, the distractions, more or less deliberate, deployed to keep us from thinking about the common refrain: “These children have an average life expectancy of twenty-five years.”

  Expectancy, average, statistics, probabilities. All we wanted to hear about was life, nothing else. That was the silent pact Sabine and I had made at the end of that summer of 1984, as we watched our pretty Agathe as she grew, fascinated as any parent would be.

  FRIDAY, JUNE 22, 2007

  “Today I had the most important conversation of my life with Marc.

  The one I dreaded most.

  How to go on thinking?

  I love you.”

  I got this text at 11:09 a.m. This morning after the music festival was overcast. Summer was off to a gray shivery start.

  Agathe wrote, “How to go on thinking?” It’s exactly how I feel so often, almost every day, ever since the summer of 2007.

  This morning, Marc entered Agathe’s room alone for his daily visit and closed the door behind him. He is the head of pulmonology at the Foch hospital, floor “pneumo C.” Today he had something to tell her. Something simultaneously simple and impossible.

  “You are going to die soon, Agathe, very soon.”

  Are those really the words he said? No, of course not. But I’m sure that ever since the conversation with Dominique the night before, Agathe sensed, as soon as Marc walked in, that this was the day—the day he would say it. I can’t recall how he explained it, the exact words he used. I don’t know what she said in reply.