Agathe's Summer

by Didier Pourquery

  What terrifies me are these few words I read on the first page of a notebook I found while cleaning out your things.

  The notebook is gray, unused. Except for three words you wrote at the top of the cover page: “And then, nothing.”

  WEDNESDAY, JUNE 27, 2007

  Since February 14 and the second transplant, Sabine has been writing an almost daily group email to all of Agathe’s friends and those closest to us. Little by little a web of support has grown around her, attentive and dedicated. It’s amazing how much time we spend each day sharing news about Agathe with people who want to know how she is or simply to reaffirm that they are there, with us. It gives a structure to our days that holds us up, even if after a while we begin to choose carefully what we say and don’t say.

  Giving news is a difficult task. Agathe’s health wavers constantly: She’s tired, she’s better, she’s smiling, she’s sad, she got over a hurdle, she’s complaining, she seems numb, her laughter lights up the room, she’s down, she’s bubbly …

  Every day Sabine shares only the essentials: the state of her health and how she’s coping. This June 27, around midnight, on the way home from dinner out with Clarisse, Sabine writes: “I’m not blind, but I refuse to settle for the complacency of ‘we’ve done all we can.’ Alles ist geschriebt is fine in mythology, but not for the rest of us humans. Thank you for your fighting words. We must remain as fierce as is our nature, and in equal part affectionate.”

  To keep ourselves from collapsing, and to support Agathe, we need to feel ourselves surrounded by a web of solidarity, a tightly woven mesh of positive thoughts. This web took physical form in the shape of a big poster hanging in Agathe’s room. Olivier, one of her friends from Oléron, had the idea of making a poster-photo album of all of our faces to give shape to the web that he called the “United Colors of Agathe.” Our faces are all so different, but we’re all smiling, sort of like a poster for Benetton.

  The poster was presented to Agathe in a great show of friendship. She was still in intensive care, four weeks after receiving the new lungs. We knew it would be a long and painful recovery, but that gathering of friends brought with it the promise of comfort for the months ahead.

  The 14th of March, Sabine describes the irruption of those smiling faces in the midst of the anxious atmosphere of the post-op intensive care ward:

  “As you can imagine Agathe was very touched when they unveiled the poster, which was brilliant. Didier, who cries easily, was overwhelmed. But it was all good emotion, balm on the wounds, honey on Aaron’s beard! Agathe had prepared a little talk for you that I forgot to take with me when I left Foch last night. To sum it up, she was telling you how much it touched her to have you all there, giving her strength with your presence and your smiles. On the medical front, the latest scans showed a marked improvement. No more hematomas around the lungs so they removed the last drain. The fever spikes have gone away. All that’s left is the veil of anxiety, but no doubt the light we all shed on her today will get the better of it.”

  This 27th of July, I think back on the month of March and I feel the ground open up beneath me. Why did everything suddenly go wrong?

  In Sabine’s notes from the 16th of March, I’m amazed by the optimism, the fight we had in us all back then, the hope that made us so happy as we followed Agathe’s daily progress:

  “Hello or good evening, depending on your time zone, since from Singapore to Bangkok, Colorado via Tel Aviv, the Baltic Sea, the South West, New York, and Oléron, we have shared over this past month a new classification of transcontinental time where ground zero is a hill overlooking the Seine. This particular trajectory is the mirror image of Agathe’s health updates. There is no straight line. But as you can tell for the past few days the obstacles are less daunting, and from time to time there are true moments of clear sailing.”

  There were still so many hopes, one month after the transplant, much worry, moments of such difficulty, the tracheotomy, the fever spikes, the anxiety that would return at night, but all was still possible.

  Today we huddle together, seeking comfort in tiny gestures, symbols, we pray—those of us who pray. I went into the Église Saint-Germain-des-Prés to light a candle for Saint Rita, the patron saint of lost causes. Saint Rita is also the name of the little chapel on place Blanche, in the neighborhood where Agathe took her first steps.

  The friend of those early days, Ratus, has returned to his place of privilege by Agathe’s side. He is a stuffed animal, a goofy gray rat. Ratus is the hero of a school textbook used by millions of schoolchildren. She learned to read with him at the school on rue Chaptal, in Pigalle. Ratus once again sleeps in her bed.

  When Ratus arrived at Foch it was cause for a small celebration. Alex brought her the gray rat and she smiled when she saw it, made us laugh as she embraced him passionately, and held him in her arms. She kept him on her pillow, a radiant look on her face. Her oldest friend was back and he would surely help calm her fears. There was joy in the air.

  And then the fever went up again, the nausea returned, and with them the exhausting rollercoasters. She’s feeling better, she’s feeling worse, she’s succumbing again, things are stabilizing …

  Ever since the second transplant, Agathe is often in anguish and pessimistic. Sometimes her tone is sharp, fierce, even violent. She knows just as well as we do that a second lung transplant is more difficult, risky, without a predictable outcome compared to the first one. The anguish also, from all the bad news that suddenly pops up when we least expect it.

  … This Tuesday, February 27, 2007, I push open the door to room 154 and find it empty. Even the bed is gone. They took you somewhere for tests. You haven’t come back up yet. It’s late. Something is not right.

  On your bedside table, made of formica and stainless steel, lie your things. A tiny stuffed sheep waits in the midst of some Haribo candies and various knickknack.

  I’m pacing in circles.

  Then I sit down on the only chair.

  You don’t come back.

  I suddenly think of Li Bai, one of my favorite poets, the Taoist who “drinks alone in the moonlight.” I’m like the Chinese poet who “goes to see the solitary hermit in the mountain and finds him gone from his hut.” The mountain is the hill of Suresnes upon which the Foch hospital clings and the hut is your room, your shelter.

  You are not there.

  I had come to see you after these dreaded tests, a transbronchial fibroscopy, under anesthesia; your infection has worsened.

  I wanted to be there when you got back. I like being there when you come back from these explorations, these exhausting invasions. You smile from your stretcher or wheel chair. “Hi, you were here, you were waiting long?”

  “Oh no, I just got here, I didn’t wait a long time, so my love, how are you feeling?”

  But no.

  You do not return.

  Like Li Bai I would have liked to “lean on two or three pines.” But there are no trees on the horizon. Only the beautiful view of Paris, that we so admired when you came out of the post-op ward to enter this “normal” ward for thoracic surgery. It was a happy event, even if Sabine and I wondered if it wasn’t a bit soon to leave intensive care. Parental intuition. But we learned, over time, to not question the doctor’s decisions. Plus we wanted to believe them.

  I look at your sheep, the candies, symbols of a normal diet with no feeding tube.

  A nurse enters. Alone.

  “Good evening. I’ve come to get her things. She’s going back to intensive care.”

  Leaving post-op, going into post-op, going into intensive care, leaving intensive care, leaving … Sometimes even leaving the hospital, like last April. Since her second lung transplant, Agathe went home for almost a month. The 29th of April, Marc and Dominique thought she could leave Foch and today the memory of that evening of April 30 at Agathe and Alex’s, we were so happy, everything was going back to normal. I went to visit her from time to time in her tiny apartment, just like before. Agath
e was even able to get out to vote (“against Sarkozy, of course”).

  There’s a photo from that month, just one. It’s dated May 6, the day of the second round of the presidential election. Clarisse and Agathe came to our place for tea. Juliette made a beautiful cake, you can see it on the low table in front of the sofa where my girls are sitting. The light streams into the living room. Agathe, dressed in black, smiles faintly as I perch behind her on the arm. On the other side of the sofa, as always facing slightly outwards, is a somber-looking Clarisse. This moment seems suspended in time.

  On May 15 Agathe has to go back to the hospital for a fibroscopy, and then a few days later an x-ray … where it turns out they discover a dark spot on the right lung. Hospitalized May 26, more tests, and a few days later, relief, as we learn it was only pneumonia, not a rejection or a lymphoma.

  I remember very precisely that absurd relief, that night, in Agathe’s room at the hospital. The events of May had come to an end. We were back in the hospital routine. I sense her disappointment, her bitterness, but am relieved to be back in her cocoon of care. Suddenly worried, she looks at me, “With all that was going on we couldn’t celebrate my birthday, Dad, but we’ll make up for it, I promise.”

  THURSDAY, JUNE 28–SATURDAY, JUNE 30, 2007

  Agathe is at a therapeutic dead end. Her meds are not doing anything against the bacteria; some are even cancelling out the effect of the others. There is a risk of rejection.

  She remains calm, diligently carrying out her duties as a patient, but without the furor she used to have. First thing in the morning she is already feverish and feels too nauseated to eat. She doesn’t mention her request for permission to leave the hospital to have seafood at Sabine’s. She’s cold, then hot, the days go by like rollercoasters: moments of hope when her oxygen levels reach normal, then moments of despair, of true suffering.

  We don’t know what to expect anymore. Sabine and I continue to “believe” nonetheless, for no other reason than our confidence in Agathe, a blind and obstinate confidence. But what about Agathe, does she believe? It’s a mystery. She often talks about her death.

  She calls me toward the end of the morning. “You know what I want? A ham and butter sandwich, a real Parisian one!”

  I hop the train and race the sandwich to her as fast as I can, this sandwich a symbol of everyday life as it used to be during her student years. Too late. The nausea has returned.

  The next day she’s feeling better. No more fever or nausea. Her room is full of people. Two friends are there, Alex too, the family …

  The June weather is hesitant. So is our mood.

  Saturday: the fever is back, she feels unwell.

  The word “rejection” was uttered by Marc, sounding worried, as a possibility. We can’t keep up. Too much information, too much bad news.

  These last days of June, when my mood would sink, my Agathe, I would think back to 2003, when you came out of your transplant surgery. I would look at those photos of you, so beautiful, so happy with your new lungs, this new breath. I liked to replay that victory in my mind.

  Agathe had her first transplant on December 27, 2002. After that terrible autumn spent in the hospital in Giens, the peninsula with no way out, when there was no choice. The decision was taken and meetings scheduled in Paris at the Foch Hospital for tests and then registration for the donor waiting list.

  That night, the 27th of December, Clarisse, Agathe, and I are together on Boulevard Montparnasse in the apartment that Sabine and my daughters live in now.

  On the agenda: pizza and movies. The atmosphere is tense; Agathe got on my case a bit because I arrived in a depressed mood, preoccupied by a complicated relationship.

  “Go ahead, tell us what’s on your mind, you won’t ruin our evening.”

  Once I’d told them what was bothering me, and we’d eaten the pizza, we settled in to watch a movie when her cell phone rang. It was 8:40 p.m.

  You went pale and passed the phone to me without another word. An organ was available. You had to get to Foch as quickly as possible. You’d just gotten out of there Monday afternoon and were now heading back there Friday evening. They had obviously decided your case was urgent.

  I went with you in the ambulance, sitting on the seat next to the stretcher you lay on. It was very emotional—like before a birth. We were frightened, you and I, in this vehicle that was speeding through the night towards Suresnes. You kept saying “So, here we go, here we go,” trying to stay calm. My cell phone rang. It was my boss from Metro calling from Sweden. I picked up only to inform him I was in an ambulance with my daughter and would not be available the next day. That made you laugh. “Oh, Dad, you can never be too far from your newspaper, can you?”

  We arrive at Foch at the same time as the organ. Agathe is expected at the pulmonary surgery wing. They bring her down on her stretcher while I take care of the admission paperwork. Three nurses take charge of her to prepare her for surgery. A transplant like this one mobilizes twenty-five people during three days and the surgery itself lasts from six to eight hours, sometimes more.

  In a state of shock, I settle into one of the chairs in a tiny waiting room full of tables and chairs. They prepare Agathe, washing her from head to toe in Betadine. I stick my head in the slightly open door: she’s cold, tense, and out of breath. They increase her oxygen. I go back and sit down. At midnight she passes me on a stretcher, headed for the operating room. Her eyes are shining with joyous impatience. She is confident, so confident. As she goes by she waves at me, and hands me her earrings and ring. I sit down in a green plastic chair. A nurse brings me tea. The wait begins.

  They come to update me regularly on her status and I forward the news to Sabine, who is driving to Paris from Oléron. I tell myself, “Here we go, here we go.” I pray, sending out a plea for grace. “Thank you, Lord.”

  I think back on these past months, these past years, and especially that fall of 2002 with the never-ending infections—a nightmare. The doctors had clearly explained that a transplant was her only hope, there was no other way to treat her.

  Just before two in the morning a nurse came to say, “It’s going well. Agathe is asleep. We’re starting to make the incision, we’ll know in an hour if the lungs are good.” I have trouble imagining it. The words are too precise and too vague. “Make the incision …” Despite the big radiator in the waiting room, I shiver. I should ask for more details; I can’t. If Sabine were in my position she would insist. I’m content to pray. I don’t want to know too much. I wait. I transmit the infrequent bits of news to Sabine. They finally come to tell me to go home, to rest so I’m strong.

  At 11 a.m. the morning of December 28, 2002, Agathe comes out of surgery and goes into intensive care. During the artificial post-op sleep, the surgeon tells us about the long night.

  The donor had to have his pancreas removed before the lungs, which delayed the whole process. The lungs were too big for Agathe’s thoracic cage, and they had to make two out of one. Strange improvisation. They had trouble getting Agathe’s lungs out; there were places they were stuck; she bled … First they laid the right lung, actually the upper and median lobes of one of the large donor’s lungs. There was a problem suturing the pulmonary artery; she needed to be given a lot of blood (thirteen bags), which contributed to the large edema she had after she woke up that was very tricky to shrink.

  All in all, the transplant didn’t go well. It went on for too long. Agathe even went into cardiac arrest. The implant didn’t fall into the correct position. The surgeon explains this all. The edemas. The extra-corporeal circulation of blood during the operation. The incision in her sternum. Her body laid open. Her body. Her. Agathe.

  What can we do with all this precise information? All we understood is that it was complicated, that she was in a fragile state, that there remained risks of “severe complications” linked to infections. We watch her through the window as the surgeon speaks to us. She is hooked up to tubes, IVs, and respirators that pierce her, drai
n her, breathe for her. There are wires everywhere, tubes, screens, nurses and interns, masks all around her.

  Her body is completely artificially animated. She doesn’t inhabit it in a way: 80 percent of her breathing is artificial. A machine is breathing for her. She is in the “acute phase,” hidden underneath all this machinery.

  On the 30th of December, she opens her eyes. We’re there, also covered in gowns, caps, and masks. She moves her head a little, very slightly, trying to communicate. She gives us a groggy look filled with a hint of tenderness.

  We’re here, my Agathe, with you.

  We hide our anxiety. Fear of the legions of enemies prowling around you, staph bacteria, the cepacia bacteria, your gladioli, the edema, the fever. Does the fever hide an infection they won’t be able to stop, like septicemia? And the immunosuppressants to prevent rejection are playing games with you, upsetting the delicate equilibrium of this body trying to heal.

  By the first of January, she is completely awake, if not yet completely aware. She has a writing pad. She does her best to scribble a “G” (shorthand for “J’ai,” meaning “I”), followed by “Cho” (meaning “I’m hot”). Immediately afterwards she asks how Clarisse is doing. “Ou L é?” Meaning, “Where is she?” She spent New Year’s Eve with friends in Saint-Gratien in the Val-d’Oise. Her brows shoot up in surprise. She’s definitely back with us, playing her role, even in a diminished way.

  The next day, she manages to explain in gestures everything she’s feeling. She squints her eyes at certain remarks, she complains, makes fun, and gets frustrated when we don’t understand what she’s trying to say, all this between the tubes in her mouth and covering her face. Her eyes and brows say as much as the words on her notepad. She is herself again. The technical details of what they are doing to her, what they need to do, the scanners, the punctures, seem unrelated to her, buried under all the tubes. Where the outer meets the inner is in the pain. She activates a morphine pump when it hurts too much. Then her eyes freeze.