Agathe's Summer

by Didier Pourquery

  An organ transplant is an illness; we’ve heard it repeated often. You must know it in order to recover from it, to stay on top of it. A transplant is also a rebirth punctuated by a series of triumphs and defeats.

  Do you remember how you would freak out the days before they unhooked you from the respirator? You had the feeling you would never be able to breathe on your own again, without that damned robot. And then one day, the 10th of January, they “extubated” you. They took the machine out of your body. A birth in reverse. Your vocal cords were damaged, you had trouble speaking, but you were breathing alone, with your new lungs. Like a newborn emerging from its mother’s waters and taking its first gasp of air. I didn’t understand it then, Agathe, but what we called a second birth was more like a resurrection to you. During the night of the transplant your heart had stopped a few instants. Did that event etch itself into your being? Had you already had a taste of death? We didn’t want to think about it.

  Then it all went very quickly: You came out of reanimation on January 15, 2003. As early as the 16th you didn’t need your oxygen tank.

  After the anxiety and the doubts comes the return of desires, ideas, and projects. It was as if the last ports they removed, the last tubes that came out, liberated her from a cocoon. The first thing she mentions is Oléron, the beach. One January 21 the doctors let her leave the hospital. Her voice is almost back to normal. She’ll have to go back to Foch once a week for tests and short cortisone treatments. She goes back “downtown,” comes back to life in her neighborhood, Boulevard Montparnasse. She wants to get back to her studies. For years she’s talked about wanting to be a psychologist. She chose a good college on rue du Montparnasse near home called Psycho Prat. She has to prepare for the entrance exam and immerse herself in studying; her smile returns, just like before. Her face, puffy from the cortisone, starts to return to normal. She is smiling in all our photos.

  SUNDAY, JULY 1, 2007

  She asked for permission to go out. To leave the hospital and its dead ends. She wanted to be outside, to take advantage of the summer … but she could barely stand up. So, in the meantime, until better days, a seafood platter brought to her at the hospital would have to suffice.

  When I get there around 3 p.m., Agathe is alone, dozing. When she opens her eyes, she looks pasty, and asks the usual questions.

  I tell her about the previous evening, the birthday party for a new trendy novelist that was on a barge, listening to Ariel Wizman on the CD player, the electricity that kept going out, the quarrel with a drunken partygoer that I had to treat harshly in order for him to leave the boat, and the like. Agathe likes having news from the outside world; having the sense that life goes on; that life awaits her, perhaps.

  Sabine joins us with the seafood platter. The ingredients were picked out at the market in La Cotinière by Alex’s mother, and the oysters and prawns brought to Paris during the night by a friend. Émilie enters soon after, trailing the delicious smell of the bread she baked herself. Alex crosses the threshold to room 940 carrying a tarte Tatin of his own creation. For my part, I fetched shrimps and whelks from the market on rue des Pyrénées. We’re all excited. We dine around six. Agathe eats a little of everything, an indulgence that she pays for with a stomach ache within no time. Her stomach has been out of practice. She has a fever and is tired.

  Seafood is your island, my Agathe. Oysters, shells picked up on the rocks, prawns from the fish market of La Cotinière. You thirst for that special mix of iodine. Sure, you were born in Pithiviers, but deep down you’re an Oléron girl.

  Alex, Agathe’s boyfriend, is from Oléron. A solid and gentle soul. He’s the son of Lysiane, the dairywoman of the Saint-Pierre market of Oléron. Before him there were other guys from Oléron, the oysterman who smoked pot, the rugby player … Anchored in the center, in Saint-Pierre, Agathe revolves around two poles on the map of the island: Saint-Trojan in the southwest, where she receives antibiotic treatment at the heliotherapy center, and Boyardville to the east, where her high school looks out over the beach.

  In 1998 when we moved to Oléron for good, right away she asked for a scooter like all the other high school students who crisscrossed the tiny island roads on them.

  “Okay, hold on. Everyone here has a scooter. I’m not going to be the little Parisian who rides a bike everywhere.”

  And not just any scooter, of course, a Piaggio Typhoon, the trendy one, that she immediately repaints to suit her taste. And that we have to adjust because she doesn’t have the strength to put it on the center stand, so we add a side stand. With her big helmet, so tiny on that machine, it looks like she’s going to lift off the ground at every turn in the road.

  In Saint-Trojan, at the heliotherapy center, she wants to do her third-year internship as an aide, to learn to take care of physically disabled youngsters, now more numerous there than the “lung patients.” She ran into those young patients during every stay and wanted to know more about them and their lives. Under the pavilions, surrounded by the pine trees, she discovered disabilities she’d never heard of, stories of distress, bodies twisted out of shape, but also an incredible tenderness. There she can express her compassion as well as share her devastatingly dark sense of humor. At the end of the day when she tells us how it went, we go from crying to hysterical laughter.

  In Boyardville, on the mainland side of the island, she goes to the autonomous high school set up in a former 1930s summer camp building. It’s called the Happy House. She loves the reigning freedom, the discussions about just about anything, all the time. She likes the responsibilities she’s given or that she takes. She’s on the school newspaper. She wants to become a reporter in New York and to study at Columbia University. Or become a psychiatrist “like in Woody Allen movies.” Agathe is an Oléron girl who dreams of living in Manhattan. New York, her dream, the city she discovered in 1997 during a family trip, the city of the Twin Towers and Times Square, her favorite landmarks. She has the T-shirt that’s all the rage that year that states: “Just on the other side—New York.”

  Later, as a student in psychology, in 2004, it’s in Oléron that she does the internship for the end of her first year, as a waitress in a small restaurant we often went to as a family. The work is no fun and the difficult boss is exhausting but she sticks with it. Every night after work, the pretty and fancy-free student bent on having a good time goes out partying among the tourists, but exclusively with her local buddies from the island. Oléron is that too: the evenings out, the parties on the beach, the grilled mussels shared with the village friends on a big U-shaped table, or a picnic on the sand.

  Agathe, a creature of the beach.

  MONDAY, JULY 2, 2007

  She’s throwing up more and more frequently from the mucus, the feeding tube full of fluids, and from the meds. Her body, saturated with antibiotics, doesn’t want to hold anything down.

  And still we pass an afternoon like any other. Our life in a vacuum, a surreal dance between the edge of the bed and the armchair, with brief excursions outside for a smoke, a continuous thread of phrases we say about the outside world. The words echo awkwardly around the room. Time stands still.

  It’s a strange war. A kind of waking dream. The enemy forces gather by the front line, but we have no idea when or how they will attack. Day after day, we decrypt a long set of facts at once abstract and very concrete about the bacteria that are eating away at her body.

  Agathe knows Juliette well and has met her kids a few times. But when I tell her they made some drawings for her she becomes anxious. An awkward silence settles in.

  “Don’t give them to me now. After. Once Sabine is gone.” She tells me this curtly. She knows it hurts me, but she’s compartmentalizing. Each part of our lives must stay in its proper place. This room is the sacred space for her “family,” it’s how it is. In the spring, she refused to let Juliette come visit her in the hospital. She didn’t want to be seen tired, all hooked up to machines, in a T-shirt and sweat pants. She waited till she could
go to Juliette’s place on election night. She climbed the three flights to her apartment, one step at a time, to visit her.

  As always, she’s the one who decides. Without hesitation, without guilt. The sessions with her psychoanalyst give her parameters, set up defenses, and we are on the outside. Her private realm gives her the strength to make clear decisions about what she wants and doesn’t want.

  Once Sabine has left, I give her Juliette’s gift for the room, a string of multi-colored butterflies, and the kids’ drawings. We spend a happy moment together, even if she’s still vomiting.

  Alex didn’t come. He was too tired. Agathe has been pissed off at him these days. She finds him drifting, not determined enough. But her romantic life also keeps her going. She speaks openly about it, asking my advice sometimes on very intimate topics. I find myself at a loss to answer her. And yet nothing is taboo. She expects me to tell her everything and doesn’t hold back telling me what she thinks. After meeting Juliette, she told me knowledgeably that yes, this time I was in a “real adult relationship.” That made me happy. Of course, Clarisse and Émilie’s opinions matter very much as well. Émilie can be ferocious behind a very controlled exterior, and Clarisse is a teaser. But Agathe’s comments seem hard to argue with, and her sisters feel the same way. For mysterious reasons, they just ring true. Especially on love. Since when do we talk so openly about our love lives?

  In February 2001, when I left Oléron to settle in Paris with another woman, Agathe’s first reaction was violent. She refused to listen to me, repeating that I was shattering her only support—her family.

  She threw herself head over heels into a romance with a cute boy from the island, Aurel. In her junior year at the “free” high school, she was determined to write her own rules. When I came to Oléron she would go spend the night with her boyfriend. Then, haphazardly, the conversation started again. In the spring, she asked me to set up a “real bed in her room, that didn’t make noise,” so her friend could stay over.

  In July, the love affair was over and she wrote me a long letter:

  “I don’t know what’s harder, finding myself without the love of another, or being left to face myself alone ( … ) This morning I realized that it was all the more painful to lose him as a man, and the love of a man—or a father—is so important ( … ) the love that Aurel gave me allowed me to love myself a bit ( … ) I don’t know why I’m telling you all this, maybe so that you get news from me and don’t forget me.”

  How to explain to her that in and out of all these years, despite all the blows, flings, and hesitations, she remained the anchor of my existence? How to tell her without sounding pathetic that she was always my compass? The part of me, untouchable, that kept me afloat during the moments of deepest depression.

  That summer I went away to Cassis, on the Mediterranean, with my new partner and her son. It was the first time I’d ever vacationed there. I had the strange feeling that I was playing a part—that of the summer tourist and fiancé, lover without roots, so far from my girls, the whole reinforced by the picture-perfect postcard views for Parisians out enjoying themselves. What was I doing there? I was a man from Gascogne feeling out of sorts in the surrounding scrublands, aioli, and cicadas. I was drifting.

  One night I had a long dream. Agathe was driving me to my birthplace, the Gironde. She drove fast and well. We passed through beautiful villages, and she knew them all by name. We were driving to a place where I would catch a bus to take me further.

  She was driving me home and helping me get to where I was going.

  TUESDAY, JULY 3, 2007

  Even when she is feverish, thin, and weak, Agathe can be very lively. In these moments we become fanciful and talk about projects for the days ahead. But she doesn’t like it when we talk about the moment she’ll be able “to get out a little.” Of course, all she wants is to run away, “get the hell out of this place” as she puts it, and she gets that look in her eyes, that dream of walking down the street, going out to eat, like … before. She dreams of it, but something in her refuses to believe it. She’s at once frustrated, calm, determined, and resigned.

  So are we. “All this waiting is causing you pain,” says my elderly acupuncturist who has been patiently seeing me through this, helping me play my part. It’s a tearing apart—a tension between despair and denial, fatalism and the will to remain optimistic, and it demands a surreal amount of energy.

  Since last night I’ve been in a dark mood, overcome by fatigue. Every day I go to Foch, to the Gare de Suresnes from Gare Saint-Lazare. I play the goofy one, talk about the newspaper’s gossipy investigations; I put on a cheery face. But at night when I board the train home, the sadness pummels me.

  I am still not able to cry. I almost did this morning while speaking to my acupuncturist, but a primal instinct (of survival?) kept me from letting it out.

  The early results from last night’s scans are hardly encouraging. The inflammation is spreading, the bronchial fistula widening.

  “The doctors look like they’ve seen a ghost today,” Agathe noted.

  Here everyone loves Agathe with her mix of tenderness and energy, compassion and revolt. Ever since her first transplant, she’s gone through so much in these very hallways and rooms.

  To her, the hospital is a synonym for fatigue, exhaustion, and depression, but it’s also a place to fight. In 2007, she took up the cause of preserving the children’s playroom at Foch, which they were threatening to close. “That’s impossible, you can’t close the space where ‘the children’ find toys, games, and activities to keep their spirits up.” “The children” are her friends, her hallway companions, partners in care, neighbors in the CAT scan. Agathe remembers the young patients she met years before at the Robert-Debré clinic. Alone, sad, wanting for tenderness, distractions, things to pass the time, human touch … for these young patients the playroom was essential.

  And it was for Agathe too. It’s where she met Anne, the art therapist, with whom she painted in Chinese ink and then watercolors while she was still in intensive care.

  Anne was a magician who transformed pain into forms and colors. She came to see Agathe every day, holding up a sheet of paper above the tubes so Agathe could express what she was feeling. I kept copies of those drawings: fluid, ghost-like, shadows emerging from water, landscapes of dusk. There would be the sea, immense skies, and blurry figures at once sharply present. In one of the drawings you could count five of them. One night when Agathe was peacefully and comfortably propped up on her pillows, she showed them to us, to Sabine and myself. We were stunned. The images wafted by, images of an elsewhere, from the other side, as if Agathe were inviting us to discover a small part of the hereafter.

  The children’s playroom was her fight, and she talked about it with everyone, sent emails, asked for people to help her take action, put pressure on the hospital administration. That was her strategy. When she decided something was worthwhile, she got the message out as widely as possible and repeated her arguments, tirelessly.

  Just before going back to Foch for her second transplant she was fighting another fight, albeit a more prosaic one. She wanted her favorite watering hole to become the go-to hang out, not all that much unlike the other fight in some ways.

  Wet Willie’s, the American franchise, sells frozen cocktails from the Midwest to the East Coast. In 2006, they opened a location in Paris at 47 Boulevard Sébastopol, near rue Bourg-l’Abbé where Agathe lived with Alex. The place became her headquarters. She used to invite her friends to join her there, organized joyous reunions, and became close with the owners of the bar. But the place had a hard time attracting a crowd. So, without being asked, she decided to handle its promotion. She came up with marketing strategies for the owners such as special events on Halloween and other American holidays. She talked about adding touches to the décor and sandwich boards on the sidewalk. She quickly became their virtual mascot.

  But she was having more and more trouble leaving home at night. With the arriva
l of winter, the fatigue and the infection had caught up with her. The new transplant became her obsession. Slowly but surely, she had to give up the cause.

  Today Wet Willie’s is shut down. Of that fall of 2006 there remain boozy and happy photos, smiles for the camera, hugs, fits of laughter. It’s hard to believe that during those days Agathe had trouble walking, that she rarely left her neighborhood. But all those fights, even the tiniest ones, were keeping her alive.

  WEDNESDAY, JULY 4, 2007

  When I arrived tonight, Agathe was asleep. I sat down without making a sound and took advantage of the moment to gaze at her. To stock up on the image of her, with her beautiful perfectly oval face, even though her features were drawn from exhaustion. She’s not doing well, the fever is raging, and she’s been throwing up a lot. Just like yesterday. Such is her life: hours at a time when she is stable, ups and downs, improvements, setbacks.

  While she sleeps, I write in my notebook. I’ve written like this hundreds of times before, when she was a child, at the Robert-Debré hospital, in Saint-Trojan, here … I write everything that’s going on, whatever comes to my mind.

  Toward the end of the day, under the influence of the medication, she sleeps peacefully. At night her sleep is fitful, interrupted.

  While she sleeps I too am serene, as if in another world. And yet, as I watch my child, her eyes closed, I am overwhelmed with distress. I cannot imagine myself without her. Or else only as an amputee, but what does that mean? I think and I write: what will I become without her, without the way she looks at me, listens, her smile or her frown, her approval or disapproval? I cannot imagine it, but ever since our discussion about death, I feel the notion settling into me, deep inside, like a mourning before the mourning.