by Pia de Jong
We park our car and continue on foot. We are among a gathering throng of hundreds of people who flow in from every direction. Next to us is a young woman in a wheelchair. On her legs lies a blanket with a dog sleeping on top of it. The young woman’s lips are so tightly clenched, I wonder if she can open them at all. Pushing her wheelchair is a skinny woman with a black lace shawl over her head. “Hurry! Go!” they yell at us. A boy of about twelve with a deformed spine comes from behind us, crawling on hands and knees. When he catches up to us, he stops and looks at us with huge, sparkling eyes. But before we can say anything, he crawls away.
The road widens in front of a huge paved square swarming with people, all heading in the same direction. We move to the side of the road to look at the crowd. Slowly it dawns on us what we are seeing. People in the square shuffle on their knees over the paving stones. Others drag themselves on their elbows or legs. All of them are on their way to a monumental church looming at the top of the steep hill. Their families stand at the side of the road, cheering them on, holding the crutches, wheelchairs, and canes discarded by the pilgrims. In front of us an old woman falls on her face in the sand. No one reaches out to help her back to her feet. No one even holds an umbrella to protect her from the burning sun.
I find it unbearable to look at. We turn around and walk as fast as we can back to the car.
We never talk about this experience afterward. It is a nightmare that we want to forget, sooner better than later. But the images of those people on the square are burned into me.
And now, so many years later, I finally understand what got into those people. Of course they wanted to go to Fatima. They were glad they could do something, pleased to find a path, no matter how impassable it was. Even when their pain got ten times worse on the hard stones, they were willing to endure the heat, the blisters, the embarrassment.
Like those people, I now long to drag my bleeding knees on the burning asphalt to the end of the world and back again. I would do all this and even more, if only it would keep Charlotte with me.
Still, I walked out of the doctor’s office, and we decided not to treat her.
Today is our first follow-up appointment with the pediatric oncologist. His office is located in the huge university hospital outside Amsterdam. A new building looming alone in endless green meadows, bordered by highways. Out- side of rush hour, it takes about twenty minutes to get there.
Before going, I worry about a thousand things. How should I dress Charlotte? Just in her pajamas, or are they too warm? Or perhaps too cold. How early do I leave, and what do I take? A pen and paper, coins for the parking meter, an extra diaper, and God knows what else. Just before we leave, Robbert drops his breakfast plate on the marble floor and scoops up the pieces with his hands. When he cuts his index finger, he just puts it in his mouth.
I bite my nails to the nub. I’d rather stay home from now on, with her. With the whole family. Not ever setting one foot in the hospital. But then we would be really in the dark about her health. I want her to be monitored, to have blood tests to find out how the cancer develops. And I want someone who is an expert in the field to look at her. Not the way we do, with hope and desire and fear, but with professional distance.
Much too late, our new babysitter arrives. Yasmin, a soft-spoken Iranian girl whom we found at the last minute. The boys immediately push their new picture book into her hands. When they crawl onto the couch with her, she starts to talk in Farsi. I would have been so happy to curl up beside them to listen to the stories Yasmin tells in a lilting language I do not understand.
At 11 a.m. we settle into the waiting room, located in a secluded part of the hospital. Unless you have to be here, you would never come to a place like this. No one will ever wander in here. It’s a hidden world. Here live the children who are pale from lack of sleep, or fear. Or because of the chemo, which makes them too sick to even stand up.
In the middle of the room is a play ship, with painted waves crashing on its sides. You can climb some steps to go inside, but no one does. No giggling child waves from behind a porthole to a mommy or daddy on the couch.
The sculpted head of a sperm whale is fastened to a blue wall. The floor is painted to mimic a sandy beach strewn with shells and jellyfish. We pick our way through all this maritime debris, avoiding the stares of the other parents, and sit down. Like everyone else, we carefully leave a few empty seats between us and the other couples.
A boy about seven years old in a Superman T-shirt sits quietly at the feet of his father, who slouches in his chair, working on his laptop. “Don’t touch it, Stefan,” the father instructs the child, who is fiddling with the tube in his nose. Sheepishly the boy drops his hand, but shortly afterward it goes back up. The part of his nose around the tube is red.
“Stefan, what did I say?” the father barks. He sounds weary, annoyed. He must have warned him many times before. He knows that his son will sooner or later pull out the tube. The son now topples over, and when the father reaches to grab him, his wallet falls to the ground. Business cards scatter all around. I eye the father’s card, so similar to mine. He is a consultant as well. I pick up his wallet and return it to him.
He takes it without looking at me. “Sorry, I’m busy,” he says apologetically. “I try to work as much as I possibly can. Otherwise I’ll go crazy.”
I cannot tell if he sees me or not. He is tapping with two fingers on the keyboard of his laptop. What is he doing? Writing business proposals?
I worked with men like him every day, in large offices with windows that were bolted shut. We were scheduled for every minute. There was no time for relaxing, no time for play. Everything revolved around work.
I wonder about Stefan’s father. Will he work until late this evening? Maybe all night through? Is he afraid of sleeping, of dreams about his boy, who right now is clinging to his leg? I imagine he is the kind of father who fantasized before his son was born about kicking a soccer ball with him on the back lawn, then eating fries in a snack bar around the corner while watching a game on television. A few Lego blocks are piled around the boy’s feet, as if someone has put them there to make everything appear as normal as possible.
A young mother with a bright yellow scarf covering her hair walks in now. She wears a flowing summer dress and flipflops with a sunflower between her toes. Hanging from her arm like an elegant bag is a portable car seat. She puts it on the floor and looks around, bewildered. Her gaze lingers on an orange plastic bucket sitting on the sand painted on the floor. Perhaps she longs to be on a real beach, with her child wearing the cutest swimsuit. Instead she and her daughter are shipwrecked on this garishly fake beach.
Her baby continues to sleep underneath a crocheted blanket. We all pretend not to see her. No one here says hello or goodbye. There is no sympathy for strangers. No solidarity, no friendship. This is a ghost town full of misery, where nobody wants to be.
The morning unfolds according to the pattern set by the hospital. We go to the room where they draw blood. A nurse probes for a good vein, then sticks a needle into the soft inside of Charlotte’s arm. The tube slowly fills with her dark blood. Why did I ever imagine hers to be lilac?
After that we visit the hospital photographer, a little man who perches in a small room crammed with equipment. His face has a yellowish cast. Is he sick? Or is it because of the artificial light?
“This way,” he says. He is a man of few words, thinking mainly about the proper lighting of body parts. With precision he adjusts the lens on his camera so Charlotte’s pink feet are best viewed. “I have been doing this for more than twenty years,” he says. “It’s routine.” When he finishes, the result appears on a computer monitor. Our child’s blue tumors are like huge oceans.
One day these photos will be in medical textbooks, probably with circles around details to clarify what they are about. They will be projected in a lecture hall full of students. Look, this is a skin tumor in a three-week-old baby with leukemia. An interesting, extremely rare ca
se. Maybe the picture will one day appear on a poster about skin diseases, which someone will hang in a hospital waiting room. A poster that frightened parents will be compelled to examine while pressing their child close to them.
The oncologist waits for us behind a sturdy desk. I’m glad to see him again, this paternal man, our ally.
I undress Charlotte with nervous fingers. First her jacket, then her pants, the fluffy socks, and her soft white underwear, until she lies naked on the table. It is painful to see her so vulnerable, so unprotected.
The doctor leans over the little body I know so well. Her skin reminds me of old maps. The spots are unfamiliar areas, frightening and dangerous, places where cartographers used to draw sea monsters. Here there be dragons.
He looks calmly down her throat and then listens to her lungs. He puts the stethoscope on her back. All in all, this seems like a regular visit to a pediatrician:. Tell me, does your baby eat well? Sleep through the night? Any further questions?
I find his fatherly demeanor reassuring. He must be a man who checks on his own sleeping children when he goes home after the night shift. He pulls a blanket back up if it has fallen on the floor, giving a barely perceptible kiss on a cheek.
He now rests his index finger on a spot on Charlotte’s back. He does all this without saying a word. But what can be said? The spots are still there. They do not change.
“We wait and see,” he says softly.
“What do you think? What’s happening?” I ask, against my better judgment.
“There is nothing I can say yet,” he says.
We avoid each other’s gaze. He does not want me to see his powerlessness. I do not want him to see my sickening despair.
“She does it in her own way,” he says. “I want to see Charlotte again next week.” I sit down, trying to find some hope in his words, some reassurance, but my mind goes blank.
Robbert, who has not said a word, starts dressing her. The same steps, but now in reverse order.
When we leave, I glance at the father in the waiting room, who is still working on his laptop. In any other situation I would have found him handsome, with his tousled bedroom hair, faint stubble, the scar in the shape of a comma in addition to a dimple in his cheek. If he had been a colleague, we might have become friends. But I leave him behind with his son playing with the Lego bricks. He does not look up as I go.
On the street we avoid the smiling people walking past us. I have started to divide mankind in two. Those who wonder what they’re going to have for dinner tonight, what shoes to buy, and where to go on vacation. And those who wonder when and where they are going to bury their child.
By now our family, acquaintances, and friends all know what’s going on with Charlotte. The telephone rings nonstop. Visitors appear at our doorstep. Again and again we must tell the harrowing story. We always get the same questions. What are her chances? How much time does she have left? How are you holding up? People want to see Charlotte before it’s too late, they want to touch our dewy, ephemeral child before she vanishes. They want to console us, if only to comfort themselves. They bring soup or a casserole, they offer to bring groceries and to look after the boys. Their fears, their insecurities, their concerns, are heartbreaking.
But soon it becomes too much. How can I find time to reflect on my situation if I am spending all my time taking care of other people’s worries? One night I sit down to write a letter. “Dear Friends,” I begin. “Charlotte is very ill. We do not know what lies ahead of us, but we will keep you informed. Please, for now, grant us some peace of mind.” I send it out to as many people as I can think of.
Yet visitors keep coming. Often they want to tell their own story. Or a relative’s. Or someone’s they have only heard about. Stories filled with sadness and despair. I can’t deal with them. I have too much pain of my own.
Then there are people who offer their opinion about the situation. They leave me speechless and often angry. The woman who tells me straight out, It’s a good thing you finally experience something bad. You’ve had your share of good luck.
An aunt tells us we are still young enough to have a new baby. A colleague reminds me that, fortunately, Charlotte is not our only child. If we lose her, we still have the boys. As if that would make it less painful.
Why you? asks a religious friend of my parents. He assumes there is a reason for Charlotte’s illness, suggesting a divine equilibrium in which evil is traded for evil. He is convinced that we must have done something to deserve God’s punishment.
On top of that, we are bombarded with unsolicited medical advice. We are told to visit a faith healer who lives far away in a camper in the woods. We need to buy a special cream that acts on Charlotte’s disturbed aura. Someone recommends a tincture that we can order through the friend of a son of someone else’s neighbor. And do we already know about the exceptional power of mistletoe? It has miraculous characteristics. We can administer the injections ourselves. Twice daily, in alternating legs.
I want to keep these things far from me, because I know they are not the answer. But at the same time, it is tempting to believe in all these miracles. A deus ex machina, an overlooked ointment, a magical potion, a laying-on of hands, an exorcism ritual that soon will be proven to work.
Meanwhile I am touched by people who act in their own quiet way. A niece who prays silently for Charlotte, a mother from the playground who leaves flowers she picked in her garden on our doorstep. Me, I wish I could talk uninhibitedly with God, but especially with Jesus, his handsome son in a white robe, to whom I used to tell all my secrets. Alone in the dark in my bedroom, when I was very young. Dear Jesus, I prayed, please make everything all right for me.
For Jesus knew everything, saw everything, and could do anything. The nuns at school taught me that he had an eye out for each individual person in the world. That included me. It meant he saw me lying in bed, knew my thoughts, and heard my prayers. I hoped he’d be mesmerized by my stories, stories that I worked on every day. The better they were, the lesser the chance there was that he would ignore me. But that was all long ago. I cannot pray anymore. Not even now.
I used to pray for my grandmother, who every so often visited us. Even though she never warmed up to us, my mother treated her like a queen. She gave her injections for her diabetes, while my grandmother scolded at her every time the needle went into her fleshy leg. My mother searched for her every time she wandered out and inevitably got lost among the back streets in our neighborhood. And most of all, she repeated my name to her, over and over again, when she slipped into dementia. Your granddaughter, Pia.
I was fascinated by this woman whom I had never seen smiling and who smelled like bitter herbs. Sitting on the coarse carpet in the hallway, I secretly watched her prepare for the night. She meticulously combed her long hair and separated it into strands before braiding it. When the streetlight went on, I saw it shine on her hair, now gray but once flaming red. Halfway through her bedtime ritual, she would start to hum. Not a grunting hum, which I somehow expected from her, but a trilling light tone that made the air vibrate. I know you are there, she sang when she stretched out to go to sleep. My granddaughter, Pia.
On the doorstep stands a former neighbor, holding an enormous teddy bear with a pink ribbon. She catches me in the middle of a fable I’m reading to my boys. I do not want her around me, this woman who always presumes I am not as worthy as she is.
“I really don’t have time,” I say, trying to think of a reason to shoo her away.
“Only for a moment!” she says and walks straight in, putting the bear in my hands. “Your daughter is sick, correct?” My answer is the last thing she is waiting for. “I heard about her,” she continues as she heads for the living room. “That’s why I came. I can help her. You should know that strong healing powers flow through my hands.” She holds her hands in the air to prove her point. Pointy nails on short fingers.
“You don’t have to,” I say.
“I can make Charlotte be
tter,” she says firmly.
“I’d rather you did not,” I say.
She looks at me, not comprehending what I just said. I’m already trapped.
“Urgency is the key,” she decrees, and before I can stop her, she spreads her hands on top of Charlotte’s head and begins to mumble.
“I’d rather you leave,” I say.
“You’ll see that it will help her,” she says, unperturbed. “Not only help, it will heal her. If only you could trust me.”
It seems as if she wishes to protect Charlotte from her ignorant mother, who understands nothing of healing energy. It annoys me, but I am too upset to argue. It seems easier to let it happen than to make a point of it.
Charlotte lies on her back on the couch, her eyes wide open. She curiously looks at the woman hovering above her head. I suddenly wonder, might the healing work for her after all? Will Charlotte feel something special?
I listen to the sounds this woman makes, somewhere between mumbling and Gregorian chanting. Greasy strands of hair fall over her face, over her closed eyes. Is she a high priestess who has made my living room into her church? Is there more between heaven and earth than the things I am aware of? Do energies exist outside natural laws after all?
Suddenly my next-door neighbor puts his music on. The sound floods through the walls, louder than usual. But this soprano is not singing one of the familiar arias I have grown so attached to. What is this shrill sound? Some avant-garde opera?
Startled, the woman opens her eyes and steps aside. “Where is that noise coming from?” she demands to know. She looks at me belligerently, hands on her hips. Immediately she is once again my old neighbor, who has opinions about everything but facts about nothing. “Well, if he were my neighbor, I definitely would not accept it,” she says. She continues her chanting, but her incantations are completely drowned out by the music.