Agathe's Summer

by Didier Pourquery

  On her night table, there’s a dried-out bouquet of immortelles. I picked them on the dunes at Treuil in the fall of 2006, when I went with Juliette to introduce her to Agathe’s favorite beach. The immortelles’ distant, delicate, persistent aroma occasionally wafts by when the door opens or they air out the room.

  Agathe sleeps peacefully. She’s a child. Right after her transplant last February, while she was still in intensive care, all hooked up and covered in tubes, Sabine and I took turns reading to her, just like when she was little. It calmed her and helped her fall asleep despite all the stuff around her and inside her. Sabine read her Echenoz, I read her a Zen fable or two every night. The minutes would go by until she would make a sign: She was falling asleep and I could go. I would then kiss her on the forehead, very gently, barely touching her. It was a game we played. The lightest kiss possible in the center of the forehead, “Like the kiss of God,” she used to say as a kid.

  When you slept, Agathe, you were forever that same vivacious and bubbly little girl exhausted after a day full of activities. Tonight, I simply think of you asleep, as if you could then wake up. I recall those beautiful innocent days as they emerge from deep inside my memory. I cry as I flip through my notebooks from 1992, the year you turned eight, searching for evidence of those tender evenings.

  Monday, June 22, 1992: I’m reading a passage from Little Nicholas. We burst out laughing. You are always one hundred percent invested in everything you do, completely spontaneous, natural …

  The night of July 14, 1992, in Saint-Pierre d’Oléron, just before the fireworks at the chateau de Bonnemie, you wouldn’t miss the torchlight procession through the village for the world. Ever since you could walk, you carried one of the Chinese lanterns we stored away each year for you and your sisters. Real crepe paper lanterns. You had to hold them straight up and high in the air so the edges of the lantern wouldn’t catch on fire. Your face is beaming with joy as you walk alongside us through the fanfare.

  The next morning, we give you a six-speed mountain bike so you can bike around the island. You want to try it right away. You take off with your mother along the winding paths through the swamps.

  I cannot recall your coughing fits. And yet, by the age of eight you already had them, especially in Paris. Your kinesthesiologist, Marie-Laure, would help you at least three times a week, sometimes even daily, to clear your lungs. In Oléron, ever since you were very small, you would do your “bronchial cleanings” with your big buddy Boyer, a warm and sturdily built kinesthesiologist. You looked so fragile next to his enormous hands when he compressed your thorax, tapped on your back, or tried to get you to laugh by telling you funny stories you insisted were not funny. Often you would cut the session short: “I’m fine I promise, I have nothing to spit up.” We tried to keep it light, between two outings, or before going swimming.

  In September 1992, I take you to the hospital. We’re both feeling happy because these tests are going to be less invasive than the old ones were. You’re a big girl now, and you actively participate in the tests. Your lung function tests go well. You breathe out when they tell you to. You do as they say.

  At the Robert-Debré hospital, Professor Navarro looks reassured. “It’s good,” he says, “she’s in stable condition, and it means we can postpone her first antibiotic cycle.” Your mother and I have no idea what he’s talking about, but we don’t ask any questions.

  That end of the summer of 1992, Sabine and I get married in the little chapel of Saint-Pierre d’Oléron, next door to the house. It’s an occasion to assemble the family, the little I have left of it, Sabine’s bigger family, and especially friends. Somehow you manage to make yourself into a queen of the party even though all eyes are on your little sister Clarisse, who is holding the bride’s bouquet. You have an innate feeling for what a family is all about. You weave the bonds between us, scamper all over the place, involve yourself in everything that’s going on. I note in my diary: “She complains, cries, annoys, laughs, dances, and doesn’t stop running. She has enough life in her for all of us.”

  It was in this austere chapel that the pastor who married Sabine and me had also baptized you, and five years later it’s where he would baptize Clarisse.

  Your baptism, at the age of four, was another family reunion—celebrating you this time. It was a joyous event that went smoothly until the moment the pastor came towards you with the holy water and you ran away. We finally cornered you at the end of a pew and they sprinkled a few drops of water on your head before passing on to the next kid, who was much more docile.

  At the time of our wedding you are much older, so you tell the story of your baptism to the people who weren’t there. The pastor listens to you speak, a glass of whiskey in his hand, and confirms the tale of your frantic escape. This chapel holds a lot of history. Sabine, like her mother before her, played the organ and was also baptized there.

  At the age of eight, you already consider yourself a true Protestant, and, in keeping with the Calvinist spirit, you make fun of me—the only Catholic in the family: “Poor Dad, it’s okay, we still love you!”

  This is the story one could tell. True, almost … It is full of pretty little vignettes but it is incomplete. What it leaves out is a larger mystery about Agathe. There is the fact that very early on Agathe had anxiety attacks and bouts of depression that cannot be explained. They weren’t just childhood nightmares, no, they go deeper. Agathe was at times completely consumed by distress. Like that night in November 1992 when I don’t know why she woke up several times feeling sad, inconsolably sad.

  THURSDAY, JULY 5, 2007

  A pleasant surprise: Today Agathe is feeling better. Surrounded by her tribe, she’s playing a word game with her mother. Her fever is slightly down. She’s smiling and cheerful.

  “Did you hear the news? I’m changing rooms. They’re putting me on the other side of the hallway, in a quiet room. You know like Grégory Lemarchal’s room …”

  FRIDAY, JULY 6–SATURDAY, JULY 7, 2007

  And so Agathe changed rooms. It appears her condition is improving. I arrive to find her surrounded by Sabine, Clarisse, and Alex. They’re going through the routine: TV, games, and open-ended conversations.

  Maybe we don’t have that much more to say that’s important now that the essentials have been iterated. Ever since the announcement, for the most part, we stray from the issue at hand. It’s difficult to get back into the hospital routine we had before, when Agathe was there for a course of intravenous antibiotics and we were waiting for her recovery.

  Agathe is happy to have us with her but I am faltering. I want to leave early. I need to find solace somewhere else, to be with my lover. Sabine has moved into Agathe’s room and sleeps on a cot. I can tell from the look they give me when I say I’m leaving that they think it’s too soon. I can’t take the TV anymore or the calming atmosphere. I need to breathe too.

  Sabine’s group emails give a detailed summary of those days.

  July 5: “The days continue along their unpredictable path. Vomiting, high fevers, and when there’s a day or night of respite from it, like today, it’s a celebration.”

  July 9: “She had a good night, no spike in fever, no violent nausea. Probably helps that they reduced the various meds. As for the underlying condition, no significant change.”

  You can read between the lines of that one sentence: Agathe’s meds have been significantly reduced.

  Between the two emails, Saturday, July 9, we had another talk with Dominique in the small office down the hall. The infection has spread to the lungs. There are two possible outcomes: A sudden catastrophic incident caused by a hemorrhage, or a slow descent, like a fire slowly burning out for lack of kindling and air.

  Neither Sabine nor I completely understand what’s happening inside our daughter’s body. We heard what she said; I was even capable of repeating the conversation word for word on the phone to Juliette. But we cannot manage to project ourselves into the near future. We are, we want to be, stu
ck in the present, in the repetition of gestures, in the daily reports.

  That Saturday after the talk with Dominique, I went to see Agathe. She was alone. I found her in the midst of a fit of laughter. The very laughter made her cough, of course. She was watching Les bronzés font du ski.1

  I had brought her a board game: Who Wants to Be a Millionaire. She loved the show and insisted that Sabine and I be contestants on it. Her spirits were high. I watched her laugh. I knew she had heard, that she sensed, that she felt IT. But she was laughing. For my part I was calm, almost serene. My acupuncturist tells me I’m transcending. I don’t know what that means. Maybe that I’m transforming a profound sadness into a rigid coping mechanism, allowing an outward appearance of serenity. How? I have no idea.

  Each day I try to imagine Agathe’s death. I cannot. My thoughts wander, I evade it.

  The day following the discussion with Dominique, I wrote several messages to friends on vacation. I asked them to “say hi to the ocean for me because I don’t think I’ll get to see it this year.” At the same time, I was thinking, “… other than to scatter Agathe’s ashes.” I wrote it in my diary as I sat next to Agathe, who was taking a nap. It was as if, in reality, it was all only words, hypotheses.

  I do get it: Agathe’s life is hanging by a thread. That delicate section of bronchial tubes between the fistula and a blood vessel, which, if it ruptures, will cause a fatal hemorrhage. I know that.

  There is also the fact that they’ve moved her to a single room, to isolate her for the duration, like those young patients in their last days of life that we used to pass in the hallways. When we saw them we would whisper afterwards, between us, that they weren’t doing too well. Euphemism. Understatement. Those “terminally ill cystic fibrosis patients” had to go somewhere. Where were they going?

  June 1, 2000, in Oléron, we receive the results of our family DNA tests. We waited sixteen years after Agathe’s birth to get everyone tested.

  It’s all very clear. Sabine and I are heterozygous for mutation DF508 and Clarisse is homozygous. Clarisse is also heterozygous for that mutation. DF508 “is a specific mutation within the gene for a protein called the cystic fibrosis transmembrane conductance regulator (CFTR). The mutation is a deletion of three nucleotides spanning positions 507 and 508 of the CFTR gene on chromosome 7. Having two copies of this mutation (one inherited from each parent) is by far the most common cause of cystic fibrosis (CF),” according to Wikipedia. Agathe’s mother and I each gave her a mutated gene. It was a one-in-four chance … and she drew the pair of mutated genes. She got cystic fibrosis from us, along with thick, viscous, obstructive mucus, pancreatic insufficiency … Four years later Clarisse would be spared.

  The “salty kiss illness” is what it was known as in the Middle Ages. Cystic fibrosis was the disease known to leave a salty taste on the brow of a child when it was kissed by its mother. An ancient Northern European proverb states, “Woe is the child who tastes salty from a kiss on the brow, for he is cursed, and soon must die.” It took until the 1930s for the disease to be identified and named. Up until then, the life expectancy of children with the salty brow was five or six years, but progress then ensued.

  Sabine and I tried to avoid any research into Agathe’s illness. That was before the internet. We didn’t want to know. The doctors were taking good care of our daughter; they knew.

  When she was born they performed sweat tests by warming up a part of her body to obtain sweat to analyze. The doctors didn’t kiss her on the brow. Although there was this one older doctor who, when she was a baby, had licked her forehead suddenly, greedily, and had confirmed, all proud of his old-fashioned diagnosis:

  “Yes, it’s indeed cystic fibrosis, I’m sure of it, there is no better test!”

  Creepy jerk, we had thought in unison.

  1 French Fried Vacation 2 (Les Bronzés font du ski) is a classic 1979 French comedy directed by Patrice Leconte.

  SUNDAY, JULY 8, 2007

  I ponder Agathe’s death even as she sleeps a few feet away from me. I write in my notebook. She wakes up and smiles at me. “Oh, you were here.” I nod toward the food tray that is getting cold. She frowns. She doesn’t each much anymore. Some cereal, a little milk with grenadine syrup. The rest is a liquid diet, via the long tube that she’s learned over the years to insert herself, through her nose and down to her stomach.

  I mention Christopher, my alcoholic, hemiplegic brother whose birthday it is today. Agathe always asks how he’s doing. I don’t dwell on it.

  I’d decided to go visit him in La Rochelle less often. Every other weekend. My priority lies here. But Christopher could easily relapse. I think about it all the time and call him every day. And yet I have to learn to let him live his life …

  Agathe mentions Alex. She’s decided to give it a break for a while. Let him deal on his own, handle his nights out and his friends the way he wants to. She says she’s not jealous anymore.

  Detachment. It’s no longer about adding an extra weight on her shoulders. She wants Alex to live his life, she keeps repeating.

  Already in February, right after the transplant, while Agathe was in intensive care, Alex went away on his long-planned trip to Thailand. Agathe had insisted he go.

  She’s trying to lighten things up, to let go.

  She had wanted Alex to go to Oléron for the summer to work in a restaurant or shop as usual, just like all the young people there did. He didn’t want to, feeling a sense of duty, probably, and attachment too, and love, yes, that too. He feels obliged to stay.

  As you speak to me about your Alex, I think of what you said to me two years earlier, when the clock really started to tick. I can picture you back then, my Agathe.

  So many projects launched … thinking about it, revisiting “season 2005” of your life history is comforting. Just like the other episodes. I replay it for myself because in those days you were so alive. So alive.

  Everything began January 4, 2005, when she was at Foch for the two-year assessment of the transplant. I felt ill at ease and tense at seeing her back in a hospital room. It had been ages since she had been in one of these places, and life had returned to a beautiful normality. The doctors’ diagnosis cut to the chase: “small acute rejection.” Agathe’s spirits did not falter.

  “It’s not that bad, I just forgot to take my anti-rejection meds, I must have missed a few days …”

  I remained speechless. I was not expecting these strange words—“small acute rejection”—a terrifying oxymoron. Something inside me froze. I was having trouble keeping a stiff upper lip. She thought her weakness was also a side effect of her psychoanalysis sessions.

  “It stirs so much up, you have no idea.”

  She didn’t really believe it, but she wanted it all to go well in any case. Despite it all. Sitting straight up in bed, she explained to me that she was deeply in love with Alex. She talked and talked. As she went on, she admitted that she was worried about the effect this stay in the hospital would have on her college grades.

  She also told me she was fed up living at home with her mother and sister on Boulevard Montparnasse. She wanted her own furniture, a place of her own. I replied that it could wait, but she wouldn’t have any of it, as usual. She had a plan mapped out and she knew what she needed to do. She didn’t yet know if it would be with Alex or a roommate, but most likely she would get a place just for herself, like her other student friends had.

  She’s back at Foch on the 21st of January 2005 and they’re talking about the rejection. She’ll have to undergo a fibroscopy tomorrow. I’m worried. Yet she seems in such good shape, not like when she came to Foch the first time, at the end of 2002.

  “I’m just in bad shape.”

  “For goodness sake, Agathe, don’t go around catching a cold, be careful …”

  “I caught it from Alex.”

  I watch her spit into her plastic tub.

  The next day I went to speak to Mark, her favorite doctor. He was worried. “I don’t like
this kind of rejection, two years after a transplant …”

  The next day she throws up everything she eats. She’s caught a virus, says Marc. That, combined with the immunosuppressants she’s been taking, it’s not good. She looks tired and anxious. And she’s furious, raging … or maybe not raging, perhaps something else.

  February, and she’s back at Foch a month after leaving.

  “Right in the middle of midterms. I’m sick of this, it’s too frustrating.”

  “Come on, it’ll be fine. See, they’re letting you out, you’ll spend the day in Montparnasse at home, and I’ll come get you and we’ll go the Fnac on Rue de Rennes and buy you a mini iPod so you’ll have it Monday when you go back to Foch …”

  “Hi Agathe, how are you doing?”

  “They put a catheter in my jugular vein to administer the treatment. The meds are really strong and the catheter hurts. I’ve got a fever.”

  “Don’t worry, love, you’ll be okay.”

  “Yes, Dad, but send positive vibes my way.”

  Her voice sounds small tonight. I’m in Warsaw with some of the other editors-in-chief of Metro, at a conference. She asks me to tell her about it.

  March 4 she’s finally released. We go out to eat at La Criée Montparnasse.

  “Don’t get too worked up about it, my love. Boys are just like that. It’s just that Alex doesn’t understand cystic fibrosis. He doesn’t completely get it, that’s all. It’s normal. He’ll come to understand it all and accept it since he loves you. You’ll see. No, sweetie, he’s not going to leave you just because you’re sick … So what are you going to order?”

  Agathe, even at her young age, is a lot like me, haunted by memory. She sent me this text on April 7. “Nostalgia, I’m watching Working Girl, nothing like a good movie to cheer you up. I know you like it too so it made me think of you.” It’s indeed true, that’s one of our cult favorites. I’ve inflicted it on my daughters many times. The story of a secretary who makes it big, rises in status, transcends her origins, despite and against her nasty, beautiful, arrogant boss … pure ’80s style. Émilie loves it too. We know it by heart.