“Don’t you think my face is all puffy?”
“A little, yeah. It’s the cortisone, it’s normal, Agathe, it always does that, but at least it’s an effective treatment.”
“I’m scared, what if it gives me cancer?”
“Agathe, stop.”
“All I want is my apartment, we talked about it a month ago and it’s already April. We’ve got to get a move on!”
April 27, she’s just spent the day undergoing tests.
“My treatment isn’t working anymore, I’m having trouble breathing, I’m going to have to have another transplant, not right away, but there’s no choice. I’m so bummed, Dad, I feel so sad. I don’t know how I’m going to announce it to Alex, I’m afraid he’ll leave me.”
“Agathe, we’re here for you. I’m here.”
“Yeah, Dad, but that doesn’t take the place of a man’s love.”
Agathe had learned to always look ahead. Within a month she was back partying in Oléron. The island in the spring did wonders for her, as always. Back in Paris at the end of May she wanted to pass her driver’s test and get her license. She told me Sabine had turned my old studio-office in Oléron into a cute efficiency apartment for her and Alex. She was coming back to life.
Back in Oléron she had discovered that a lot of her friends were on the “wrong path.” Some had become drug addicts, others dealers, some both. There was even one in prison. The island was not strictly a paradise, she knew it, and it scared her.
But she had made progress. At one point that summer she had to be hospitalized for an intestinal obstruction and was out in three days. Two years earlier I used to say, “Agathe is a survivor.” That was the best way to characterize her before and after the transplant. For example, when she went to her baccalaureate exams without her oxygen tank, to be “like the others.” After the transplant, she left the hospital with her head full of projects to accomplish. She survived everything: the doldrums, the bacteria, the other health problems. She was so determined to move forward.
In 2005 she knew she was entering the waiting period for the next transplant, which can be a long and a bumpy road, but she still kept on making plans of things she wanted to accomplish. She was so sure of herself. She trusted the teams at Foch, and in the two years that followed she went back to them as soon as she didn’t feel well, or was having too hard a time, to reassure herself as much as to be treated. Since 2002, Foch had become her reference point. Between her two stays there, she lived as fully as possible.
WEDNESDAY, JULY 11, 2007
Agathe made a painting with Anne. Another portrait of the sea and sky with shadows drifting upwards. In a calm voice, she tells me exactly how she’s feeling. She talks about death.
“I keep thinking about it, Dad. It just keeps popping into my head. So I think about it. I imagine what it’ll be like. Because it happens, it’s going to happen, soon. It’s weird, I just know it …”
“…”
“We’re all set, right, for me to be cremated?”
“Yes, sweetie, we already talked about it.”
“Okay, but I just want it to be very clear. My ashes, scattered on the beach at Treuil, on the dunes, just like you, right?”
“Yes, my love, I promise. But …”
“And the ceremony after at the chapel, at Saint-Pierre, I want everyone to come, and be out in the garden too if the weather is nice. I want everyone who wants to come to be invited. Everyone. I think about it at night sometimes, Dad. Everyone there, the Oléron crowd, my friends, the family, the whole family.”
“Yes, of course, everyone who loves you will definitely be there.”
That’s how we talked about it. Serenely, seriously, without getting emotional or crying. She talked about her funeral just like she would talk about any other party on Oléron. Then she explained to me again the hole she’s in. She described how the bacteria were gaining ground.
“They said it’s attacking the parenchyma of the right lung.”
The word “parenchyma” had a strange ring to it. It sounded like something far away. And yet it’s here, right nearby.
The bacteria, these invaders, take advantage of her weakness, and as she puts it, eat every calorie she swallows. It’s a familiar enemy we know all too well, pitiless, alive, and malevolent. An adversary readying itself for the final victory.
Agathe tells me what I’ve already known for two days, in plain words without drama. She explains what’s happening in a detached tone, as if it were about someone else.
Detached, you, Agathe? It’s so strange to see you this way. It seems as if you’ve overcome the anxiety, the depression. Yes, you’ve let go. You, ordinarily so intense, so of this world, are starting to take flight, just like the shadows you painted today.
That night two old friends, Marie-France and her eldest son Ariel, came to visit her. We lived across the hall from them when Agathe was little, on rue Fontaine. Ariel and Tristan were like brothers to her growing up. She was constantly going back and forth from our apartment to theirs. We’d look for Agathe in her room and would find her instead taking a bath at their house, with Tristan, or having dinner with them, especially on nights when their father Raoul was there visiting from Belgium. He could make the best fries. She would sit in front of her plate, in a fit of giggles, and ask for a double dose of pancreatic enzymes so she’d be able to digest them okay. Today she’s happy to see her friends, practically her family, in her room at Foch. Sabine makes tea. She brought an apricot tart and within no time we’re all reminiscing about the 1980s and rue Fontaine: the slightly crazy upstairs neighbors; the old Russian taxi driver who was so in love with his wife; the call girls on the ground floor; Marie-France when she locked herself out and I had to climb into her apartment through the window. Agathe is glowing. We evoke the memories lightheartedly, as if we had not a care in the world. And yet behind our smiles we are all strangely calm, almost solemn.
It’s the beginning of the school year in 2005. You’ve had to put off your courses in psychoanalysis (but not your own analysis) as you await your second transplant, and all you can think of is one thing: getting your own apartment. This 9th of September you’re coming from an appointment at the hospital and we’ve spent the day visiting one-bedrooms with elevators. You’ve become very thin and can’t walk at your usual pace, as you quickly run out of breath. You can’t even walk and talk at the same time, you have so little breath. But you want it all, right away. You want your transplant. You want to move into your own place without delay. You say you cannot stand living with your mother and sister anymore. You tell them. They are hurt but you don’t let that stand in your way, you want to live with your boyfriend, to have a place to call your own. It’s not easy to find an apartment in Paris in September. Everything we visit is expensive and shabby.
You want to be near the neighborhood where I live and work, near Les Halles. You have your paperwork ready and scour the listings online. You work at it nonstop and four days later announce that you’ve found it. It’s rue Bourg-l’Abbé, the door next to the Bains Douche, the public baths turned into a trendy 1980s disco, one hundred meters from the Metro office where I work, just across the Boulevard Sébastopol. I take care of the deposit and you move in October 3. Your departure leaves a huge hole in your mother’s and sister’s lives, but all you can think of is your new nest.
From that point on your life in that apartment becomes an unending series of celebrations. On October 8 you call me, all excited that your landline has been installed. And, since this new project is like a new beginning, you announce that you’re going to be able to go back to your studies at Psycho Prat.
Saturday, October 22, we spend the afternoon buying books for your return to school. You have your list in hand. You’re not in great shape, but are buoyed forward by the desire to make up for lost time, to catch up to the others. We purchase the works of Winnicott. You wanted to be a psychologist to “help the children in the hospital.” You wanted to own all of Winnicott, th
e father of child psychoanalysis, according to you. Your eyes sparkle.
November 2, 2005, Agathe is on the official list of emergency transplants. Three days later she gathers us at her place to assign each of us a list of “things to do” the day she’s called up for the transplant: getting the mail, steps that need to be taken, friends to alert, etc. Sabine and I feel awkward when she launches into what sounds like her last words. She concludes:
“I’m reassured to know that you’ll handle everything. That way I don’t have to worry so much. My psychoanalyst and I were talking the other day. I know all these material things are just excuses for me to keep you, and be certain you won’t abandon me.”
At times I have the impression that as much as you love living in your apartment, you miss your mother and sister, your clan.
You now call me daily. Just to chat. Talk about your studies that fascinate you, and about your lover. And about the wait. As if everything will be different after the transplant. Your life will return to normal, you say. You want to go back to a normal life. It makes you impatient. You’re scared too. You know what it’s like. You’ve been through it before.
The waiting makes you terribly anxious. And the anxiety makes it harder for you to breathe. And so your psychoanalyst comes to your house now. Your school accommodates you. You’re losing strength and yet at the same time you’re fighting to hang on. You stop by my offices at Metro quite frequently. You sell books and CDs on PriceMinister. You are tired and often stuck at home, but you are determined to remain active.
The 10th of December you return to the hospital. I spend the day with you going from one test to the next. We tell each other our dreams of the past week. We do crossword puzzles, but also the psychology test in one of the weeklys: Are you authentic? You? Yes. Me? They classify me as a “prudent.” The team at Foch decides to keep you for two weeks and put you on oxygen and antibiotics.
This is your life. You wait for the transplant, you come and go from the hospital. And you live as much as you can. But it’s an effort. You end the year 2005, on December 31st, in bed. Alex is working in a restaurant and won’t be home till late. I shop for your New Year’s Eve dinner, foie gras, champagne, and smoked salmon. I come see you, and leave the provisions in the kitchen for you to ring in the new year with. You have a sad little smile. The year ahead will be tough. I’m in the same mood as you and go see the exhibit entitled “Melancholia” at the Grand-Palais.
SATURDAY, JULY 14, 2007
Juliette left on vacation with her kids. Alone in Paris on Bastille Day, I meet up with Sabine and the girls at Foch. We want to see the fireworks from the hospital windows. It’s a unique vantage point. We form a tight little group around Agathe’s wheelchair and set ourselves up in front of the big bay window at the end of the hallway of Floor A. We watch the rockets and the falling leaves light up the hillsides of Suresnes, Saint-Cloud, and Courbevoie. We make silly and sometimes ironic comments. Agathe sets the tone; we parody the TV anchors’ way of describing these kinds of ritual celebrations, and their exclamations. We overdo the oohs and ahs. But not too loudly. We try not to make too much noise as we’re not supposed to be parading around on this floor. Lit up by the multicolor lights, our little group looks ghostly.
We had dinner in Agathe’s room. I’d brought along some prepared food from the Italian place on rue des Pyrénées. Since yesterday she’s been able to eat a little.
Yesterday we ordered in sushi. We ate the raw fish while watching the contestants on Koh-Lanta (the French version of the Survivor series) swallow huge white worms. It made us laugh.
Agathe was alive, present. That night of July 14, more than ever, she was the center of it all, settled in her wheelchair, eyes staring at the sky. Just like for the fireworks in Saint-Pierre of Oléron, what seemed like centuries ago …
When the final burst of sparkling lights had barely touched the ground we would make our way to the town square to dance to the music of the bandstand. The ball was the other highlight of the evening. Agathe so loved to dance.
Today we watched the celebrations from a hospital hallway. Earlier in the day we wheeled Agathe outside to sit in the courtyard in the sun. She was too tired to stand up. But she wanted to go somewhere.
She’s dancing. She’s eleven years old and she’s dancing. As she dances, I cry. I see her through my tears. She’s the only one I see in the studio in Pigalle, where her class is having its end-of-year performance. The rhythm of the jazz dance courses through her from head to toe. Her long hands, like butterflies, flutter around her. It flows, and the pulse of the dance explodes out of her body.
She is free, concentrated, and happy.
Each time my daughters have an end-of-year performance I cry as I watch them. That innocence, that simple and beautiful energy, focus, and effort, touches me to the core.
And yes girls, you do make fun of me. I am indeed a dad that cries. It’s a bit embarrassing, always bordering on the dramatic.
Watching her tonight, I think about how my parents are dead and will never get to see my Agathe dance. This is the cause of my sadness.
She often dances, with her sisters, in little performances they film of themselves. Agathe is always in charge, just as she is with all games.
Watching those old movies now I am still amazed at that grace, that fluidity. You dance the way the women did in stories from the Bible, to glorify the Deity and to defy death.
She dances and the music becomes one with her. We love music in our family. Agathe is also a musician. She loves all kinds of music, with an insatiable curiosity for the way it brings out emotion, makes one move, and provokes that instant joy.
That day, after three years of taking class, she danced like any eleven-year-old of her time, with the urge to be perfect. Dance is an exercise in perfection, in control. She gets it and uses dance to control her body. Dance makes her feel even more keenly that she is delicate, agile, and light. Years of kinesiotherapy have sculpted her muscles; her abs, especially, are hard and toned.
She dances. Happy. She dances as if on a thread. Fragile.
Suddenly she starts to cough. Lightly, but the earth has opened up beneath her. It all falls apart. She coughs. A dancer doesn’t cough. Her momentum is lost because of one of the fits we know all too well, and that she tries with all her might to contain and cover up as best she can. We’ve been worried about it for a few weeks now. She mentions it too: “I cough, it throws me off, it’s humiliating.”
She finishes the dance with a frown on her face. The coughing fits become less intense but convulse her body every so often. She breathes in jolts.
The party is over. It was the last piece, performed by the older group. She goes to change. She’s furious, sad. I watch her. I’ll give her the usual compliments, the reassuring traditional words, optimistic. We congratulate her. “You were the best,” we whisper. She doesn’t answer. A sad smile. Her look is broken and enraged.
She still danced after that, often, at home, at the Bastille Day ball, at parties, in nightclubs, to have fun, to relax. But never again on a stage.
Agathe moves on to the next thing, because she wants to try it all. I only get that years later. She wants it all. She’s in a hurry.
“But why, my love? You’ll see, you have time!”
She sighs when she hears me say these asinine platitudes. Looks at me with tenderness and exhaustion.
She tries everything. She could play the piano with a baffling ease, this tiny pianist with long fingers that looked like they’d been created just to touch a keyboard. Her fingers reached far for the notes, her long straight fingers with nails turned round and bluish from the disease, the phenomenon known as “Hippocratic fingers.” Some of her more malicious friends nicknamed her ET One night when she was still very small, she played with Dirk Annegarn, a Dutch singer from the 1960s between two comebacks. It was after one of Sabine’s theater group performances. She had insisted on coming along.
She played a few chords, and then Dir
k Annegarn started to sing. Everyone was quiet and listened to the slightly broken singer improvise a children’s song, as she accompanied him without a glitch. Serious, concentrated. Perfect left hand; precise right hand. Everyone joined in the chorus. Only her eyes were smiling. Glowing. She was the queen of the party. The song, like so often when there are choruses, went on forever, so she stopped, lightly coughing, to end with a flourish, her trademark. And everyone clapped. She was radiant. There it was. A perfectly formed memory. She could move on.
The saxophone was another interest. A child who cannot breathe cannot play the saxophone, but she didn’t give us the choice, so we rented an alto and she learned. She played with great gusto, tightly pinching the stiff reed. She played, and sometimes we accompanied her on the piano or guitar. She would let out a few notes, nicely timed. We loved playing together as a family, especially when Clarisse started to play the flute. And besides, the sax was classy.
She played till the day came when she understood that a saxophone player cannot cough. She stopped before it ever happened. The saxophone was relegated to a corner of the living room, where everyone kept their instruments, next to the piano, and then we eventually returned it.
TUESDAY, JULY 17, 2007
As of yesterday Agathe is no longer on oxygen and they reduced her meds again. Good news or bad? We don’t really think about it, as we’re focused on the fact that she’ll soon be able to leave the hospital. She has permission to go out in the evening. Her first outing will be to celebrate her mother’s birthday, at her home.
In the days that follow, she leaves the hospital every evening. She goes on walks with us in the nearby Bois de Boulogne, or out to dinner. Agathe is standing, walking, slowly, often using our arms for support. It’s touching to see how seriously she takes it. It’s a new challenge she’s set for herself.
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