If, p.17
If, page 17
In the corridor Lise explains quietly that they’ve been advised to limit the number of visitors and it therefore makes sense to restrict them to people whose presence really means something to the child. She adds that she’s very sorry to hear about the man’s wife, but she doesn’t think it desirable to mention her imminent death in front of her child. The man appears to understand and beats a retreat. Estelle escorts him to the elevators and then returns. She takes big strides, her chest puffed out, comes to stand squarely in front of Lise, and spits viciously, “That was so rude, what you just did. I didn’t think you were that kind of person.” Lise explains again. Just in case Estelle still doesn’t understand the context. Her friend is getting angry. She’s very red in the face and throws her arms around convulsively. She looks as though she might take off. Sadly, she doesn’t. What she actually does is start yelling. Lise is very embarrassed. Not because she drove away Mr. Mustache, but by her friend’s behavior. There are dozens of parents in the department whose children are very sick, in danger, and in some cases may even be doing that same present-progressive thing. But there are never any raised voices here. No one ever complains, sobs, or screams in this corridor. Everyone respects everyone else’s pain and makes no great display of their own. It isn’t a written law. It’s just the way it is. A question of manners. Or survival. So Lise is ashamed; she feels at fault for bringing into the Institute a woman who’s disturbing the precious equilibrium of the place. She should have seen this coming. Right now what she needs to do is contain the scene and not succumb to anger herself. She has better things to do. Luckily, her fight against cancer has mobilized all her resources and therefore forbids her sacrificing even the smallest part of them to anything inessential. Luckily again, Olivier appears at this point. Lise hastily summarizes the situation for him and asks him to get rid of this nuisance. Olivier has no energy to spare either so he reacts instantly. He instinctively takes Estelle by the shoulders, physically containing her outburst, while begging her, gently but firmly, to leave the inpatient department. There in the reception area, in front of the elevators, he then suffers several long minutes of verbal incontinence that, despite his own steady entreaties, he doesn’t succeed in stemming. Estelle whines, curses, yells, and shrieks. She keeps on and on saying, “You’re not the only ones with problems. I have issues too.” Her screams carry to the far end of the department. Olivier stands firm. Lise can’t hear what he’s saying to Estelle but knows he has it in him not to blow his top. And is reassured by this. She sits down on the yellow sofa in the corridor. Cécile comes to sit next to her and puts a hand tactfully on Lise’s arm.
“What you’ve just been put through is very tough,” she says. “I felt terrible for you. There was nothing you could have done, you know, it happens sometimes. Anyway, you reacted very well. There was no other way to handle it.”
Lise savors the dual comforts of Cécile’s gesture and her words. Other than this, she doesn’t feel anything much at all. Not anger, hate, disgust, regret, or even exhaustion. She is simply grateful to Cécile and Olivier for their support and hopes she can return to normality as soon as possible. But for several hours to come she will have a subtle trembling sensation in her limbs.
Two days later Lise receives a text from Estelle. She apologizes for her behavior. She doesn’t even understand it herself. It’s frank and direct; it’s all Lise needs. She forgives her and immediately forgets about it. Estelle never visited the Curie again.
ACCOMPANIST
There is one man among Lise and Olivier’s friends who comes to the Institute regularly. He’s Simon, Solal’s piano teacher. Right from the first week of treatment he arrives at the hospital every Saturday at the exact time that the child usually has his lesson at home. This arrangement happened almost of its own accord. Lise thought it would be good for Solal, who proved enthusiastic about the idea. When they asked Simon whether he would be happy with it, he immediately accepted. Now everyone behaves as if this is simply a change of address, and over time the benefits of this weekly visit turn out to be considerable. In the first instance this is due to the very act of playing music, which doubly fulfills the task of keeping the child occupied. On the one hand, the piano captures all his attention and focuses it on specific things—reading the score, respecting the rhythm, and accuracy on the keyboard; on the other, it releases his imagination and invites it to escape. By the end of the session this repeated sequence of contractions and relaxations produces a sort of vital flow, rather as the cardiac muscle does. The artistic element remains somewhat limited at the Institute, though, and this is because medical circumstances always end up gaining the upper hand. Most of the time, Solal isn’t strong enough to play or even to stay sitting at the piano for the whole lesson. On his best days the lesson lasts no more than thirty minutes. And even then, while Simon beats out the rhythm, adjusts the position of Solal’s hands, or corrects a wrong note, he has to keep a spare kidney bowl on his knees, ready to position it between the child and the keyboard at the slightest sign of retching. The fact is unavoidable and is accepted as such. Vomit breaks are now part of the lesson’s routine, as the chocolate break once was. The pedagogic limitations don’t really matter much. Every note played and every chord achieved in itself constitutes a sort of victory over the cancer, one that is both minor and essential. It makes the possibility of forgetting into something tangible. Besides the musical content, Simon’s presence here is enough to reconstitute hope. By keeping up this Saturday ritual, he lends a familiar pattern to the weeks in the hospital, he simulates ordinary life and introduces a semblance of normality into this oncological exception. And so a simple music lesson enshrines evidence of continuity above the chaos.
Solal is not the only one to benefit from this visit; his mother draws comfort from it too. This is because Simon is more than a piano teacher; he also accompanies the songs that Lise has been writing, composing, and performing for a number of years. It means they have a special understanding. A piano doesn’t simply follow the voice; it supports it, carries it, gives it solid reference points along its way like stepping stones across a river. Every note can then find where to alight with confidence. This technical constancy guarantees freedom in the interpretation. On the rhythmic and harmonic base provided by the instrument, Lise picks out her path and grants herself variations. She invents, allowing nuances, high notes, and the tempo to fluctuate. The tune wavers, steps out of line, trips, and bounces back. These small discrepancies aren’t merely ornamental, they introduce a suspense that gives the piece its true identity. Because agreeing to take a step to the side means risking losing her footing. It’s never safe. It takes so little—one eighth note too many, one ill-timed semitone, one forgotten quarter rest—and everything can end up in the water. From an artistic point of view, this danger is an asset: the listener quivers with fearful anticipation of a fall, but these falls are rarely truly damaging. Professional accompanists can save the day; they have tricks up their sleeves. The hiatus of uncertainty when instrument and singer appear to diverge irretrievably only increases the pleasure when they’re reunited, and these reconquered harmonies produce pleasurable emotions. Even so, Simon isn’t happy simply supporting the melody on the piano; he too makes digressions. He adapts, adds color, ornaments with counterpoints, motifs and leitmotifs, other voices, and even other instruments. He also alters the silences, often inhabiting them discreetly with the softest arpeggio or with pearlescent notes whispered into this musical darkness. Or he prepares for them with such a furtive diminuendo that it eventually melts into absence. But he also sometimes lengthens them. Aided and abetted like this, every song is a wonderful opportunity to escape, and it’s a narrow escape. It’s a breakaway that, wherever it may wander, is bound to end happily.
Needless to say, there are no opportunities for such escapes at the Institute. The endless comings and goings of nurses and visitors, the hiss and bleep of machines, the presence of sick children, the very ugliness of their illness, and most of all the fear skulking in the shadows—everything here constrains and inhibits creativity. Lise, who was so prolific the year before, has actually stopped composing since she was told that Solal has cancer. She no longer has the time or the inclination for it. It’s not something she thought about. It’s just what happened. Her inspiration dried up in the same way that it arrived, spontaneously, instinctively. Before, it would well up of its own accord. For no apparent reason, Lise would feel something bubbling to the surface, a brief phrase or a few words accompanied by succinct notes. Then she sat at the piano and, through the successions of chords, she allowed these tributary motifs to converge into other, more substantial flows. The melody then expanded, picking out the contours of a story as it found its course. That’s all over for now. No more notes and no more words. None of it. Lise simply has nothing left to say. But having Simon here still makes her want to sing. Unable to compose anything new together, the two friends choose to revive existing material. In the barren desert to which cancer confines them, covers of famous songs stand in for creativity. They alight on familiar material and add their own unusual nuances of stitch and color. They improvise. With its restricted ambitions, imagination still dares to weave its way into their renditions, therefore reclaiming some of its vitality. A simple alteration in tone, theme, or timing can bring everything to life again. The voice seeks out the instrument and the instrument the voice. It may well be a patchwork but the lightness and originality of this little rhapsody combining the familiar with the different have their own charms. The game is on again and, with this, some part of life seems to be restored.
The two friends don’t talk much; they don’t mention their fear or pain: music is their only line of communication. There is one time, though, when Simon comes to sit next to Lise in the corridor. He’s just been alone with Solal for a while because the child is too weak to get out of bed and play the piano today, so the two of them just chatted. Lise and Simon now sit in silence, side by side, looking at the closed piano.
“Do you know,” Simon says, suddenly turning to Lise as if on an impulse, “I always knew I liked Solal, before. But not this much.”
Lise doesn’t reply. Nothing else of the sort will ever be said again. Lise and Simon will go on making music together for many years to come. Their friendship will grow, consolidated by these harmonies. Only once, four years later, will Simon mention the Institute to Lise again. Admitting how deeply affected he was by these months. Saying that he wasn’t aware of it at the time. The visits didn’t cost him anything then, but later, when it was all over, he had flashbacks, nightmares, even dizzy spells. He often had painful memories of that hospital, of Solal and the other sick children. And it had an appreciable effect on his life. Lise won’t be surprised to hear this. She always saw her friend’s commitment if not as a sort of heroism, at least as recklessness. But then maybe that’s what being a friend means.
STOWAWAYS
There’s always an inside and an outside. A within and a without. Things, living beings, social entities, places, words—nothing escapes this law and yet these concepts are relative. It’s all down to point of view: depending on the angle of observation, surface can become depth, appearance essence, and the strange familiar. The outside inside. Boundaries are constantly redefined. Endlessly movable.
Life at the Institute depends on this paradigm shift. Anyone who comes here must appropriate things that are fundamentally alien, and assimilate this new world, learning its customs and becoming familiar with its codes. In the early stages, newcomers tend to adopt the reflex responses of foreigners in a host nation, withdrawing into themselves and their families, ghettoizing themselves. But this retreat doesn’t last: integration comes fast. They become acclimatized, accustomed, they gain autonomy. Within a few days they’ve settled. They are connected by a sort of collective identification. Hospitality transforms exile into integration. It may appear comforting, but this evolution has problems of its own, and this is because these same people still have to keep revisiting the old world. Inhabiting two different spaces and moving in two distinct timescales, they feel they’re living two lives. It’s not easy splitting themselves in two like this. They soon feel torn between contradictory affiliations. At home they can’t stop thinking about the Institute; at the Institute, about home.
Prosaic it may be, but in many cases this proves to be a simple quantitative question. Whichever parent is still working spends less time at the hospital, or at least less waking time. He or she often visits only in the evenings, and sometimes at night. That’s a lot in itself, for sure, but not enough to make the place feel like another home. Caught in an infernal triangulation between work, home, and the Institute, this parent is also permanently confronted with many difficulties. He or she spends restless nights on cots, takes hasty showers in the early hours, and has extra commuting to do. In spite of everything, though, these parents know where home is, and home remains their point of reference. By contrast, the other parents, those who’ve abandoned any social function, struggle with questions of identity. The fact that they are a part of this place but are simultaneously from somewhere else means, paradoxically, they are residents in neither. They feel stateless. Foreigners here, foreigners there, like the children of immigrants. And so they must endlessly reposition themselves, redefine their criteria, reevaluate what they say, and adapt how they behave in search of inclusion. The toing and froing is exhausting.
In this instance, lymphoma provides a solution of sorts. By needing the patients’ mothers to be at the Institute virtually the whole time, it removes the time factor. It decides for them and dictates to them, forcibly giving them a residence visa. The world gradually recedes, and the refuge is substituted for home. Eventually there is a total reversal. The Institute becomes their only reference point, the basis around which the geometry of their daily lives is built. The usual order of things no longer exists; another logic has taken over. It is in fact a very peculiar phenomenon: all at once everything outside the hospital seems strange; what felt natural only yesterday is suddenly open to question. Normality seems eccentric; ordinary things are tinged with exoticism. When they leave the walls of the Institute, these parents behave like travelers lost in some faraway land with outlandish customs. The layout of the city, the plethora of streets, the institutions, the politics, the leisure activities, the conversations in bistros, the gossipmongers, the snappy dressers and the sassy dressers—everything’s a source of amazement to them. They view their former peers with the startled bewilderment of an ancient Huron or Persian in Paris. At first they may draw some strength from this, influenced by a sense of irony combined with a longing still to be a part of that world, but they soon lose any appetite for it. They then willingly retreat to the Institute, weary of their foray into Absurdia and convinced that they’re finally back where they belong.
* * *
—
A coffee three mornings a week, a very few dinners cooked by brave and devoted friends and family (a couscous one time, a fondue another, and oysters at Christmas), and a birthday supper in the spring. That’s all. It’s enough. And yet everyone’s doing his or her best here: our friends to take our minds off things, and us to spare their feelings. But we’re here and not here at the same time, because there’s no question of discussing the one thing that preoccupies us the most. We sympathize about upset stomachs, head lice, problems at school, and squabbles. We harrumph about shameless bosses, unemployment, injustice, global warming, and wars. We comment on a news item that we haven’t been following, refer to shows we haven’t seen, and plan vacations we won’t take. We celebrate good news, smile at witticisms, and laugh at jokes. We fool them all every time, still chatting in this ancient language that no longer feels entirely like our own. Ours is incommunicable, a language whispered in intimate moments. It’s incomprehensible and cannot be interpreted. It’s inaudible, too painful to hear. We’d rather keep it quiet. The only things that spring from it are our children’s love and the strength that keeps us going.
* * *
—
Inhabitants of the Institute may rarely venture outside, but movement in the opposite direction proves equally limited. And that’s because the place is fairly protectionist. Not just anyone gets to enter. Other than professionals, parents, and occasionally grandparents, right to entry is granted sparingly and depends on the wishes—and present condition—of the child patient. And these don’t necessarily coincide. There’s no free exchange, which is a good thing, to be honest. Applicants are fairly rare, anyway. A visit to the Curie constitutes a grueling journey that not many are prepared to undertake. A spirit of adventure holds no weight because the place is too disorienting. So there are few applications and therefore few refusals. But the outside world can come up with other means of entry: there are stowaways.
First of all there are telephones. A phone means you can be here without making the trip, therefore avoiding any problems associated with the journey. A connection can be nurtured like this, avoiding issues of hygiene, vulnerability, or appropriateness. It spares both visitor and resident from possible overload. Because they’re not experienced physically, eye contact is less freighted, tears less heartbreaking, and distress more bearable. “Lise, I’m calling…”—silence, gulp, sob—“I’m calling to…”—silence, gulp, sob—“I’m calling to…”—silence, sighing, intake of breath—“oh, damn it, I’m calling to say…I don’t know what to say.” Lise laughs. “Well, there you go, that’s a wonderful, supportive thing to say. And plus you made me laugh! I’m glad you called. Thanks.” It’s actually very easy. And it means a lot. There’s nothing else to say. Still, some people can’t even talk, afraid it’s a bad time or they’ll say one thing too many, but they want to be there so they show their solidarity by text. Voice substitutes for a person, and then the written word for a voice. Thousands of words infiltrate the Institute like this every week: thoughts, encouragement, kindnesses—like so many demonstrations of affection transmitted in abbreviations, archiphonemes, and emoticons. It’s a private backslapping exercise: one friend texts Lise every day to tell her how strong she’s being, another sends her smileys, hearts, and flowers once a week, a third regularly sends her weird pictures found on the internet. The child, meanwhile, spends a lot of time messaging his friends, godparents, and cousins. His cell phone, which he was given four years early because of his isolation for health reasons, now provides a condensation of his social life, is its kindly messenger. Every day mother and child wait for these words and images, these signs of another life that is still possible. This waiting fills and structures their time, conferring a human density on an elastic present.
