An Ideal Presence Read online

  I applied. The palliative care unit gave me an appointment, and I had an hour-and-a-half interview with Madame Gosselin, the head of the unit. Madame Gosselin told me everything, showed me everything: twelve single rooms, twelve beds total, night shift from 8:30 p.m. to 6:30 a.m., morning shift from 6:10 a.m. to 1:51 p.m., afternoon shift from 1:10 p.m. to 8:45 p.m., a room with a huge bathtub which Madame Gosselin likes to joke is the luxury reward for the best patients, a staff of a dozen nursing aides and a dozen nurses. All the while she asked me questions: what does pain mean to me, what does it mean to care for a patient. And, above all, why this unit.

  “I don’t want to work without my values, without taking the human into account,” I told her straight out. I hadn’t prepared these words, or any kind of speech. I promise you. I remember this sentence coming out of my mouth like someone else had said it before me. I say it to myself now, sometimes, like a proverb. “I don’t want to work without my values.” That’s it.

  JOSÉPHINE BOULLEAU

  MOBILE UNIT NURSE

  Two years ago, after five years as a nurse in the palliative care unit, I was invited to move to the mobile unit, a sort of extramural extension of our service. The members of this unit are supposed to provide “offsite” care, but that’s a vast concept: sometimes it means walking down the twenty steps to the pneumology section on the lower level of our building; sometimes it means getting in the Twingo and driving an hour and a half to see a single patient in a village whose name you won’t remember three days later. I’ve had to go out on my own, or with a doctor or the young psychiatrist, Mélanie Lemaire, or even sometimes with both. Last week, for example, I went with Marie-France Bergeret to see the family of a man with a serious disease. We arrived at the retirement home more than a hundred kilometers away, only to find nobody there. A miscommunication …

  In the mobile unit I had one of the most memorable experiences of my life. The emergency service had called me to see a patient. It was eleven at night and the man had just arrived at the hospital. Someone had found him half-conscious in the street. As soon as I saw him, I knew he was going to die. It was a matter of minutes. After so many years in palliative care, you can see it immediately. The emergency personnel hadn’t called the family yet (he was married, but I didn’t know that until later), we had to look through his papers — which takes time — and most of all, may I add, nobody had realized he was so close to the end. The man was living out his last minutes alone, and I felt like I had to stay with him. He shouldn’t die all alone, even if he was already almost unconscious.

  It’s odd, staying next to a stranger to escort him into death. Dying is an intimate act. And yet I couldn’t leave. I took his hand. That way he would know there was someone by his side… He turned his back to me, he kept his eyes closed, he was barely moving anymore. But his hand held my hand, and he could — why not — attach to my touch whatever face he wanted.

  Suddenly, I could feel he no longer wanted me there. I took my hand back, gently. He began to groan. It was painful. It was over.

  I stayed in the room. I waited for his wife to arrive; they had just told me they’d called her. She would show up soon, and I could tell her about her husband’s death. But I was already being called again. I couldn’t stay. I asked the emergency doctor if he could give the wife my number. Not my personal number, but the mobile unit’s. That way she could get in touch with me and I could at least tell her that her husband had passed peacefully enough, that he hadn’t suffered too much.

  I spent the rest of the day in quite a state. I kept seeing the man’s last moments. I was imagining not only what I would say to his wife, but also how I’d present the facts. I built a detailed story in my head, chose my words, perhaps too carefully, constructed an embellished version of this poor man’s death. I was rather satisfied with the words I had prepared. I was ready and anxious, as if the man were still suffering, as if he were waiting to finish dying until the exact moment his death, the story of his death, left my mouth and reached his wife’s ears.

  Can you believe it? The wife never called. Not that day, not in the days after. So I took a notebook and I wrote down, sentence by sentence, my nice little speech. Alas, once it was written, once it was set down in the notebook, it seemed very disappointing, much less powerful than it had been in my head. I guess you must know that feeling, being a writer. I kept the notebook in a drawer and finally, over time, forgot about it. I only found it again a few months ago. But I couldn’t bring myself to reread it, no. It’s the story of someone else’s death … Honestly, I think I should burn that notebook. Like a sort of cremation. A burial. I don’t know. Nor do I know whether I’ll have the courage to go through with it.

  PASCALE RAMBERT

  DOCTOR

  People avoid each other in the family room. They do it under the pretext, which isn’t all that false, of not bothering others. They do it most of all, in truth, because their own pain is enough for them.

  NADIA CHOUNIER

  NURSE

  I won’t say his name, out of respect for doctor-patient confidentiality, but also because his name is still painful to me, in spite of the time that’s gone by. He was young. He was barely a year older than me. He was single — he had some friends his age who came to visit him, most of them with a family, a wife and kids, and I could see he was delighted to see them, but that for him family life was an unrealized dream … what do they call it? A missed opportunity, that’s it.

  He was very weak from the pain. He was somewhere else more and more of the time, because of the opioids we administered to calm him down. One day, however, he did an astonishing thing. He sent one of his best friends out to buy a bouquet of flowers. For me. The friend came into the room with the bouquet and gave it to him. He struggled to take it in his big hands, which had started trembling. A few minutes later, he held it out to me without saying a word. I had had a hard year. A breakup. My self-esteem wounded by falling out of love. Those flowers, I’ll never forget them. I know: he, the patient, was, in a sense, paradoxically enough, taking care of the nurse.

  He was very shy, very respectful. However, one day while another one of his friends was there, he ventured, “Hey, this is Nadia. I wanted you to meet her. She doesn’t know it yet, but I’m in love with her. I should have met her a bit earlier, it’s a pity.” I blushed like a schoolgirl. I couldn’t tell you what I said, but I made him understand how touched I was by his words. And from that moment on, we made a little joke of the whole thing. He teased me in front of everyone. I was “his fiancée,” “his girlfriend.” We laughed. Of course, I kept my distance. But at the same time, I never stopped thinking of his words: “I should have met her a bit earlier, it’s a pity.” Yes, it was truly a pity.

  DANIÈLE POURCELY

  NURSING AIDE

  I had just arrived in the unit and a nurse was retiring. They had put together a going-away party. Someone had brought in a few bottles of champagne. We don’t drink on the job. Except when it’s a patient’s birthday and the family comes with a bottle. In that case we’re often invited to join, and the custom is to accept and take a tiny sip, nothing more. But that day, this nurse was drinking. It was her last day and she was overwhelmed.

  We were in our kitchen and suddenly she handed me a glass and started telling me about a patient she had known at the beginning of her career, in the 1980s. The man was old, nothing left but skin and bones. He didn’t speak to anyone. He seemed indifferent to everything. She felt invisible to him. Nonetheless, one morning when she was alone with him in his room, she heard the bed creak and the old man’s voice asking her very politely if she could show him her breasts. At first she thought it was a joke. She was going to laugh, but suddenly she thought better of it, maybe he was delirious, maybe it was an extravagance caused by the morphine. So she took the precaution of not saying anything. She acted as though for once it was him, the patient, who was invisible.

  The next day, though, the man tried again. She just responded by sha
king her head. But the man was obstinate. “In two weeks I’ll be gone. This is all I ask of you. You’re the youngest one here. The prettiest. The sweetest. The only one who’s not married, if I’m not mistaken.” No, indeed, he was not mistaken. But the idea was scandalous. Who did he take her for? “I’m sorry, but I don’t think that would be right,” she said. The man insisted, still with the same arguments. “You’re not like the others. You’re extraordinary.” She saw him there, in his bed. He had a pleasing way of smiling. And his voice, above all, his voice was seductive. No doubt he had been a handsome man.

  Back then she was still living with her parents. Naturally, she didn’t tell them anything about all this. But the man was indefatigable. “The two breasts, please. Or at least one breast.” One day she thought, why not? The man was going to die soon. The fleeting vision of a breast was an easy charity to give him. An insignificant thing compared to his suffering. It would remain between her and him. And, after the old man’s death, it would remain in her mind as an amusing memory in a series of rather morbid memories. She decided to do it, and said to herself: “The ideal time to do it is the day after tomorrow, Thursday, when I’ll be on the night shift. There won’t be many people around, and nobody will see us.”

  The man died the next day, a day before. Perhaps it was for the best. She wasn’t very religious, but she couldn’t help thinking that God wanted it this way. A week later, during a coffee break, another nurse confided in her that that man who had just died had asked her to undo her hair and show him her thighs. He had used a thousand arguments to try to convince her: “You’re so pretty, you’re so unique … ” She never found out whether this nurse had acquiesced to the patient’s wishes.

  Today, she said, she suspected the man had asked the same thing of all her colleagues. All told, even if she hadn’t had time to accept his proposition (even if she had perhaps been the only one not to go all the way with it, she exaggerated three decades later), it was still a funny memory. The perfect memory to share on the occasion of her last day of work.

  MARGAUX TELLIER

  VOLUNTEER READER

  You’ll see, later on. When you’ve worked nonstop all your life. When, what’s more, you liked your work. When you still feel young. That’s when retirement is dangerous. You have to figure out quickly how to spend your time. Me, I was a schoolteacher and also did some acting. The daughter of a good friend, a doctor here at the UHC, told me one day about something they were setting up: volunteers to come read to patients. They wanted to build a team of two or three people. The project has been going for a year, but for the moment the team of readers is just me. I’m here two mornings a week. At first I came in the afternoon. But I noticed that in the morning the patients are more receptive and have fewer visitors. It’s better. In my backpack, at the UHC, I have about a dozen books, mostly story collections. Personally I prefer novels. Reading a short story, I often say, is like visiting a place; reading a novel is like living there. Yes, I can see you don’t fully agree. Anyway, stories, given their length, are ideal to read out loud to patients. I always have Chekhov and Maupassant with me. I knock on the door, if it’s not open. I introduce myself, because, you know, the patients change constantly here. Sometimes I have to introduce myself more than once because the oldest patients tend to forget everything.

  Some patients ask for a particular author or genre. One Tuesday morning, a lady asked me to come back that Thursday with an erotic novel. I went to my neighborhood bookstore, where I often chat with the owner. He suggested two or three novels, each steamier than the last. I came back on Thursday with my book, and the woman was ecstatic. She said, “We’re not going to read it all, right? Let’s go straight to the good parts.” The author wasn’t much of a stylist, but he had his talents, his charm. The problem was that the woman would burst out laughing every time there was a slightly suggestive passage. It was hard for me to keep reading.

  A week or two later, for the first time, another woman, younger but more withered by illness, asked me to read her a whole novel. Madame Mathilde, as everyone called her, wanted a detective novel. “A good detective novel, something by Simenon, if that’s okay with you?” she asked, as if it were up to me to decide. I went back to see her a week later with a Simenon novel. I had planned out, in my head, seven or eight reading sessions. At first everything went well. Even if she was getting steadily weaker, even if she sometimes seemed to nod off, lulled by the rhythm of the text, it didn’t matter, she followed without difficulty. The proof was that as soon as I walked into her room she would start talking to me about the possible solutions to this mystery that had gotten under her skin.

  There were only two or three chapters left when Madame Mathilde’s state took a swift turn for the worse. We had to cancel our reading session three times in a row because she was in too much pain, physically almost unrecognizable. A nursing aide to whom I said as much told me this happened often, that it was always a bad sign. The experience I’ve gathered since confirms this. But this woman wanted to know at all costs how the book ended. To the point that one day, a Wednesday, I got a call from the hospital. It was Jacqueline Marro, if I remember correctly.

  “I know you normally only come on Tuesdays and Thursdays, but Madame Mathilde woke up today a bit more lucid and is asking for you. She wants to finish the novel.”

  An hour later I was here. I said hello to Madame Mathilde, who fluttered her eyelids, nothing more. She seemed truly fragile, but also fully present.

  I began reading the last pages of the novel. I sensed that she was summoning all the strength she had left to stay with the story.

  After half an hour, I looked up. It was getting late, and I had to stop reading in order to turn on a light. I looked Madame Mathilde in her eyes and said: “Not much longer.”

  I paused, flipped through the book.

  “Thirty pages and we’re done.”

  At that moment I saw that her eyes were open wide, cold and lifeless.

  I called Jacqueline, who came running. Yes, Madame Mathilde had just died. I was shaken. I couldn’t leave the room or get up from my chair. So, Jacqueline and I, we agreed: I would finish reading the novel. Out loud. While she tidied Madame Mathilde’s things.

  I don’t remember anything about the book’s plot. But I remember the chill I felt when Jacqueline closed Madame Mathilde’s eyes. I remember, also, that the emotion didn’t take my breath away. That I eventually made it to the last page. And that the last word in the book was not death, no. But a word one letter shorter: life.

  JACQUELINE MARRO

  NURSE

  I woke up in the emergency room. I could barely tell where I was (in what section of the UHC, I mean), I had a vague memory of my last thoughts before my fall, and I had no idea how much time had passed. I remembered, on the other hand, the moment I had felt my legs buckle. The world had spun; I had the innocent thought, for just a second, that it was an earthquake. A nurse explained to me that Delphine Ziegler had found me passed out, at the foot of Madame Doubouloz’s bed. Poor Madame Doubouloz, whom I’d just been talking to about who knows what so I didn’t have to tell her her face looked completely disfigured by pain, the poor woman had rung her alarm and shouted sharply: “She’s dead! Jacqueline is dead!” All of which set 0ff, naturally, a chain reaction. All of the patients were frightened, without exception. Half an hour later, Delphine Ziegler showed up at my bed. She had told everyone she was going to smoke a cigarette in the courtyard. But she actually wanted to check on me. Before leaving again, she told me I had made a hell of an impression on Madame Doubouloz. I may not have been dead, but I had fainted after seeing her: her face was so awful, so terrifying, that she made everyone swoon, including the nurses. I wanted to break the doctors’ orders and go to the palliative care unit to reassure the patients. Not an option. I was to rest. They were going to run some tests. I managed to call Richard and explain everything to him. “I’m coming,” he answered. “I’m getting in a taxi right now.” When he arrived at
my bedside, I had just learned that I was pregnant.

  CARINE LE BRUN

  NURSING AIDE

  Some people, like me, prefer to work at night. So we do it regularly. For instance, you’ve already spoken to Hélène, right? She’s often paired with me. She’ll tell you it’s calm at night. But it’s also scarier than the day. You can hear the patients’ breathing more clearly, their moans of pain, the mechanical sounds of the machines, the words being exchanged, the silences. Working at night is a little like living in reverse. The downside is social isolation. Living in a world where all your friends are asleep when you have the time and desire to see them. Taking turns sleeping in bed, when you’re in a couple … like the story about the poor laborers who share a mattress, you know? That’s why, from time to time, you have to ask people who aren’t night-shift specialists to come lend a hand.

  There are rules at night: no more than two visitors per room. Only one of the two visitors gets a small cot. We had to make these rules after one night where four people slept around the same patient and it was impossible to work, to care for him or even move. The hardest moment of the night is bedtime, just before sleep. The window between 9 p.m. and midnight. Sometimes a patient will call and ask, in a child’s voice, “Leave the door open a bit, please.” That’s not a good sign. No, never.