Agathe’s Summer

by Dider Pourquery

Sample translation by Brian Phalen
 

Thursday, June 21, 2007

“I received the results. They aren’t good.”

Dominique speaks softly, opening a file on her desk. It is 8:30pm. The corridors of the department are quiet. Sabine and I have anticipated this meeting all afternoon. At the hospital, the parents of patients must be patient. Life here is spent anxiously waiting. We have a lot of experience.

Agathe had a CT scan yesterday, a fibroscopy this morning. On the phone, one of the interns spoke to Sabine of a fistula in the region between the trachea and the lungs. She updated me while we were waiting for Dominique. We did not really understand. We simply sense that—the intern insisted on these words—it is “very serious.”

Agathe also senses something; this morning she called Sabine to have her come spend the day with her at the Foch Hospital.

Dominique speaks to us in this tiny, elongated room, cluttered with computers and filing cabinets, where the heads of the department meet to give instructions and discuss treatments. With her short brown hair, her quiet movements, her direct and level gaze, Dominique is the epitome of caring competence. Renowned pulmonologist, in daily contact with kids in an ongoing battle to keep breathing, her compassion is tested, her warmth reassures, and so does her determination. But she says what she has to say.

“...the bacterial attack is very serious, her gladioli…”

That old acquaintance. Burkholderia gladioli colonized Agathe in 1994 and got stronger over the years, despite two lung transplants. That bacteria, her bacteria, took hold, developed, proliferated…

Today, it can no longer be contained.

“...the infection has caused a fistula in a bronchus that is expanding fairly quickly. This hole could suddenly burst a vessel, causing an internal hemorrhage. Neither surgery nor fibroscopic interventions will help.”

Dominique uses precise words, as to leave no room for false hope. We know her. We trust her. Over the years, she and Marc, the head of the pulmonology department, have become a real support system for us, as well as friends for Agathe. Listening to Dominique, we must face the facts: there is no way out. We stare at her, as if we were waiting for a new piece of information, an opening. Our gaze freezes: we hear what she is saying, but we have put up our walls, defenses against the whole truth. Behind our fortification, a little flame continues to shine. Agathe’s life.

Refusing to see the whole reality and all of its consequences has become, over the course of twenty-three years, our defense mechanism, obstinate and complete. To counter Agathe’s uncertain life expectancy, Sabine and I have always maintained an absolute confidence in her vitality. Until the end.

A week later, Friday, June 15, 2007, when Agathe had been stabilized in the operating room, then taken to her room, I had noted simply in my journal: “5:35pm, We just learned that Agathe has left the O.R.; a priori, it’s an infection, rather an abscess. It’s not a rejection. I’m reassured.

Reassured!

The next day, I was still writing: “Agathe is irritated, tired, and hasn’t reacted well to her mix of six antibiotics. A harsh trial for her.” Nothing more. The news passes by. Life goes on.

Yet, Agathe’s second lung transplant, four months ago, brought us into another era. Everything has been harder since, more painful, more serious. We see Agathe fight and struggle like never before. We really feel that this second transplant, which she has eagerly awaited, welcomed so happily on Valentine’s Day, is not doing well. Every bit of progress is retracted, every remission is called into question in a few hours, everything is unstable, everything worries us. We snap back to reality. We are having more and more trouble preserving that subtle equilibrium of optimism and denial we have maintained for so long.

Dominique knows all this. So she says very clearly that it is the end. The medication can do nothing else for her.

Final and irrevocable: nothing-else-for-her.

We take it in, silent: they cannot do anything else for Agathe. They cannot save our daughter; the girl we have watched live, laugh, suffer, and fight for nearly twenty-three years.

It all started in the summer of 1984. Summer, already, the hospital in summer. In the emergency room at Saint-Vincent de Paul in Paris, another doctor had delivered another sentence. Cystic fibrosis. We were not familiar with the disease. We did not even know how to spell it, with one c or two.

Dominique explains again what is happening to our daughter’s bronchial tubes. Details, specifics. We are paralyzed, our questions are incomplete, stretches of silence between question marks.

Then again, we are not really listening anymore. Right now we want to see Agathe, to be close to her. That’s all.

Quiet, on her bed, the television off, Agathe watches us enter her room, raising her eyebrows. She furrows them when she sees Dominique: she does not like that we consult with her doctors without her. She wants to know everything, control everything; she hates being overprotected. She, who does not mince words, demands in exchange that she not be lied to. Agathe studies psychology. She has been in analysis for two years. She is developing a way to tackle every subject head on, with total clarity. She wants to stay in control, to know everything that concerns her. Everything.

This evening she seems strangely serene as we enter her room. What does she know about her state? What does she sense? The past few days, she has spoken often about death, with the nurses, with Sabine. She has told the nurses several times that she does not want to die here, not in the hospital. She brings up her passing less often with me, but when she does, it is in the form of a joyful provocation:

“If I’m going to die, you know what I’m going to do before? I’ll go to Oléron, and I’m going to stuff my face with oysters and seafood! You’ll take me, right, Dad?”

I play my part, I tell her to stop with her crazy ideas—yes, it’s true, seafood is great—and we move on to something else. It is like she is taking care of me.

Occasionally she does have bouts of silent anxiety, empty stares she cannot hide from me. I catch them.

This evening, while we are in her room with Dominique, she seems calm.

“I just started watching a new series, Dexter, this gory show about a serial killer. Not bad.”

She says this without conviction. She waits. It is late; she sees all three of us come in. It is unusual for this hour. Dominique sits down at the end of her bed.

“Agathe, I told your parents that…”

She explains only part of the truth. It is serious, hence the cocktail of antibiotics; it is complicated, it is not enough. Agathe listens, does not ask questions. Dominique pats her hand and leaves us. Agathe follows her with her eyes.

She turns toward us. That look… We talk about the antibiotics. How is she recovering from the the fibroscopy? She isn’t in too much pain? No, she says, she is just a little uncomfortable. There.

She points to her sternum.

We quickly run out of things to say. So she asks us to leave; she is tired. She says, “I love you.” Like every night.

Sabine and I are silent in the car. I try out some platitudes: we have to be strong and positive. I say these things in general, ever the emotional and optimistic Boy Scout. Within the family tragedy that is playing out, this is my job, sometimes to the point of absurdity. As for Sabine, she comforts her daughter with a blend of tenderness, patience, determination, and fantasy. Agathe understands this allocation of roles. She is not fooled, but it reassures her.

Sabine drops me off in her neighborhood, at Montparnasse. I take a taxi that struggles to make a path through the streets invaded by a joyous, dancing crowd. According to the driver, it will take a while. I don’t care.

I am in no rush. I think back to what Dominique said.

It is June 21, 2007, Make Music Day. Alex, Agathe’s partner, has taken to the streets to clear his mind. It is a strain on his nerves. He needs to get some fresh air. Agathe wants to keep him at a distance, to protect him. And she needs to be alone. I imagine her in her room. Is she sleeping? What is she thinking about right now, while I am in this taxi, her mother at home, and her boyfriend among the festival-goers?

I am numb. My pain is total, like suffocation. I keep saying to myself on a loop, as if to keep myself protected, the same thoughts, “I don’t understand, I don’t believe it…” As if I were talking to someone else. “Not possible, no, not possible.”

That same old tune sends me back twenty-three years.

...August 15, 1984, a Wednesday (not important, but it is something I remembered: you were born on a Wednesday) you came into the world at night, at 2:40am. At the Pithiviers hospital, Doctor Odent and his team perform the birth without violence, the Leboyer method. In water, darkness, calm. There are cushions and midwives who whisper encouragements to your mother. That is how it all starts for you. You arrive gently. It was our obsession: that your arrival on Earth was as natural as possible, the least medical. Everything must be tender. A birth, we thought, is not a disease.

Voilà. You came into the world, quiet, in a hospital full of ottomans and plastic pools, of subdued lighting and kind smiles, with tenderness all around.

Two days after her birth, Agathe is transferred to a Parisian hospital room lit like a dentist’s chair, into a plexiglass bubble, plugged in, “monitored,” a tiny catheter inserted into one of the veins on her shaved temple. A drip in her head: this image will be forever etched in our memories. For several weeks you can still see the mark from the little drip. Shorter hair, there, just above the ear.

We do not recognize her right away. We do not see the relation between the baby born in Pithiviers in protective darkness and this little wounded animal, pinned to her mattress. Sabine wants to take her away. She rebels, protests, rants, a tigress not letting anyone touch her young. Agathe sleeps with all the lights on. Her stuffed parrot has been hung above her head; a parrot with a music box inside, which she will keep forever.

Between the ottomans of Pithiviers and this bubble, there was a bowel obstruction, a test, an analysis, and a final diagnosis: cystic fibrosis.

Then the ambulance ride to the Saint-Vincent de Paul hospital at Denfert-Rochereau.

August 15th fell on a Wednesday that year. Christophe, who was doing his military service in Blois, had come on leave. My brother wanted to see you right away, to be the first. To take advantage of the simple joy of a birth, to hear the words people say on these occasions: “Yes, it went well, a little long of course, it’s the first… no, she isn’t hungry, she isn’t nursing, not yet… she is clean, too, we don’t really understand, there is nothing in her diaper… look how thin she is…” You were so pretty, my Agathe, so graceful and unwrinkled, thanks to the birth without violence… Like a certification of hippy clear conscience: without violence.

We have often told you the story of your birth, my Agathe. Every time, you would exclaim, “But Pithiviers is so far from Paris, that’s crazy!” You liked that we would narrate the journey for you again and again: our car that would not start while Sabine’s water was breaking in a phone booth in Montparnasse, my rush to take my mother’s car and… Every time, you listened to the story of your entrance into the world with a mix of pleasure and offense. Good God, what irresponsible parents, choosing a maternity hospital one hundred kilometers from Paris! Deep down, I know you really liked that, my darling: no, you had not come into this world like other people! You loved being a Parisian born in Pithiviers in a hippy hospital.

At Saint-Vincent de Paul, three days later, I am watching you. Sabine went out, she could not take it anymore. She would like to hold her little girl in her arms, but it is not possible. Agathe is sleeping on her back, strapped in, she is being rehydrated, she is being fed through a tube. They tell us: only a few days. An eternity.

Born without violence, she moves very slowly among the wires and tubes. Her hindered movements are graceful. I think of her older sister, Émilie, born by Caesarean six years earlier, premature, also in an incubator, shockingly thin. I fed her in the Porte de Vanves hospital with the milk pumped from the breast of her mother, Agnès, who stayed at the Passy clinic. Émilie also made very slow, beautiful movements in her incubator. Émilie and Agathe share their father, a strange genetic combination, and their first days of life moving from softness to a medicalized incubator.

Sometimes, in her bubble, Agathe smiles up at the heavens, despite the cords and tubes. I am already taking to admiring her. I believe life is stronger than anything else.

A week after Agathe’s initial release from the hospital, the pediatrician, in her beautiful office in the Marais, hopes to explain to Sabine what her path will look like.

“We are all going to die, right? Well, for Agathe, it will be a little earlier than for most people…”

Sabine puts Agathe back to sleep in her bassinet, leaves the office pronto, and never goes back. We switch pediatricians. Agathe is a sensational baby. Terribly sharp and lively, she is a bit thin and small, but she will grow, surely. She is beautiful, everything is fine. Everything is fine.

However, we were not able to settle so easily into this “everything is fine” narrative. As it so happens, one of Sabine’s uncles, Dr. Georges Simon, is one of the great French specialists on cystic fibrosis. He ran a center that took in children suffering from the disease, in Saint-Trojan, on the island of Oléron where Sabine’s family is from. Retired, making the rounds of conferences and organizations, Uncle Georges wants to help us. He gives us a lot of information. Too much probably. We sort through what he tells us. We can only see Agathe’s smile and her lively eyes. However, in the stream of his words, we hold onto these: “a twenty-five year life expectancy is average.” Quickly followed by the usual “advances in research,” advances that will little by little “improve her comfort of living” and, who knows, be able to give her a few more years… We listen to Uncle Georges when it suits us. He helps us, makes our lives easier, discreetly. He can clearly see our frame of mind. We even refuse to join the organization for parents of “CF.” For years we will not go anywhere near them, at the very most taking some literature from the hospital. It’s decided: life will triumph. Besides, other than doses of pancreatic enzymes added to the feeding bottles, some medications, and respiratory therapy, Agathe’s day to day life is normal. Nothing indicates that she is sick. Or very little.

In the taxi blocked amid the Make Music festival, I think back to all of these strategies for avoidance, for distraction, more or less conscious, which were used to ignore those words: “For these kids, a twenty-five year life expectancy is average.”

Expectancy, average, statistics, probabilities. We had wanted to see nothing but life, not thinking of anything else. That’s the silent pact Sabine and I had made at the end of summer 1984, as we watched her grow, fascinated like all parents, our beautiful Agathe.