The Diving Bell and the Butterfly

Hunched in my wheelchair, I watch my children surreptitiously as their mother pushes me down the hospital corridor. While I have become something of a zombie father, Théophile and Céleste are very much flesh and blood, energetic and noisy. I will never tire of seeing them walk alongside me, just walking, their confident expressions masking the unease weighing on their small shoulders. As he walks, Théophile dabs with a Kleenex at the thread of saliva escaping my closed lips. His movements are tentative, at once tender and fearful, as if he were dealing with an animal of unpredictable reactions. As soon as we slow down, Céleste cradles my head in her bare arms, covers my forehead with noisy kisses, and says over and over, "You're my dad, you're my dad," as if in incantation.

Today is Father's Day. Until my stroke, we had felt no need to fit this made-up holiday into our emotional calendar. But today we spend the whole of the symbolic day together, affirming that even a rough sketch, a shadow, a tiny fragment of a dad is still a dad. I am torn between joy at seeing them living, moving, laughing, or crying for a few hours, and fear that the sight of all these sufferings—beginning with mine—is not the ideal entertainment for a boy of ten and his eight-year-old sister. However, we have made the wise collective decision not to sugarcoat anything.

We install ourselves at the Beach Club—my name for a patch of sand dune open to sun and wind, where the hospital has obligingly set out tables, chairs, and umbrellas, and even planted a few buttercups, which grow in the sand amid the weeds. In this neutral zone on the beach, a transition between hospital and everyday life, one could easily imagine some good fairy turning every wheelchair into a chariot. "Want to play hangman?" asks Théophile, and I ache to tell him that I have enough on my plate playing quadriplegic. But my communication system disqualifies repartee: the keenest rapier grows dull and falls flat when it takes several minutes to thrust it home. By the time you strike, even you no longer understand what had seemed so witty before you started to dictate it, letter by letter. So the rule is to avoid impulsive sallies. It deprives conversation of its sparkle, all those gems you bat back and forth like a ball—and I count this forced lack of humor one of the great drawbacks of my condition.

But we can certainly play hangman, the national preteen sport. I guess a letter, then another, then stumble on the third. My heart is not in the game. Grief surges over me. His face not two feet from mine, my son Théophile sits patiently waiting—and I, his father, have lost the simple right to ruffle his bristly hair, clasp his downy neck, hug his small, lithe, warm body tight against me. There are no words to express it. My condition is monstrous, iniquitous, revolting, horrible. Suddenly I can take no more. Tears well and my throat emits a hoarse rattle that startles Théophile. Don't be scared, little man. I love you. Still engrossed in the game, he moves in for the kill. Two more letters: he has won and I have lost. On a corner of the page he completes his drawing of the gallows, the rope, and the condemned man.

Meanwhile, Céleste is doing cartwheels on the sand. Perhaps some compensatory mechanism is at work, for ever since the act of blinking became the equivalent of weight lifting for me, she has turned into a genuine acrobat. With the flexibility of a cat, she does a back flip, a handstand, a somersault, and a whole series of daring leaps and twists. She has recently added tightrope walker to the long list of professions she envisions for her future (after schoolteacher, supermodel, and florist). With the onlookers at the Beach Club won over by her display, our budding entertainer now launches into a song-and-dance act, to the great dismay of Théophile, who more than anything else hates drawing attention to himself. As shy and reclusive as his sister is outgoing, he wholeheartedly hated me the day I sought and obtained permission to ring the school bell for the first day of class. No one can predict whether Théophile will be happy; but it is certain that he will live in the shadows.