Today I am back from a week of teaching in Taos. I am weary. Ronan is lounging beside me, watching the revolutions of the ceiling fan and letting me tickle his feet. When he smiles you can see nearly six teeth, and the ones in front are getting bigger, more wolfish, more like a little boy’s. I wonder if he would have needed orthodontic work, had he lived. I wonder if he’d have needed braces and headgear as I did, if he would have needed to wear that metal bit at night, as I did, the salty metal surface crusty with slobber in the morning, my mouth aching as if I’d been chewing iron all night. I remember feeling like a horse when I woke up, as if in my dreams I had been an animal led around by the mouth, my unwieldy and too-big teeth clenched hard.
I watch the trailer for the new Harry Potter film and find myself weeping at the images of dirty-faced kids in danger with only their friendship and their skinny wands and a handful of memorized spells to protect them. I need a spell, an incantation, a magic trick. My grandmother, who is nearly 90, sent me a birthday card addressed to “My Beloved Niece.” She signed it Aunt Lois. She told me that God is waiting for Ronan in heaven, where he will be perfect and saved. She will never know him, and I will never tell her that he is not headed for angel-dom. This is a hard day and I have been crying a lot, crawling through the moments.
Today Ronan has worn only clothes with a surfer theme: Surf’s Up, Surfer Dude, Ride the Tide. This last one has a picture of a boy in motion on a surfboard — something Ronan will never do. The green shirt brings out the green in his eyes. I am weary of the celebrity babies, weary of the births of babies that seem to happen so effortlessly, like a “woops!”, and how this news is privileged over news about bombings where men and women who are somebody’s daughter or son are killed. I’m not interested in parenting advice or sappy statements from the Beckham duo or Kate Hudson or Mariah Carey. I’m interested in how it’s possible to live in the world while watching your kid die, while watching people die, while boarding buses in your hometown and not knowing if you’ll be returning to the place you began. No handbook for that, no clear instructions, no promise that the end of the story will be anything less than unbearable. Nothing to fix it, straighten it, make the world align. When Ronan came to Taos for my birthday last week, I woke up in the middle of the night and felt the familiar drop of the ground beneath me that comes with the knowledge of what’s coming, only this time the air was full of doors and behind each of them was a drop. Dropping on all sides — doors flying open before a hand, under an elbow or an eyelash. No safe place to rest.
Today I’m posting a section from the book about Ronan’s life, written in Spain. Weil, who accompanied me in her own way through nearly every day of my time there.
Simon Weil Goes to the Neurologist
DAYLIGHT – INTERIOR – DOCTOR’S OFFICE
Simone, 32, is sitting on the doctor’s table wearing a blue cotton gown printed with small, leaping bears. The bears are brown and wearing blue neckties. The neurologist is thirty-something, balding, and wearing a short white coat. Simone’s dark hair is cut in a cheek-length bob. Her eyeglasses are round and delicate and her eyes look translucent. The room is quiet and full of light.
“Can you wait for just a moment?” he asks.
“I can wait all my life.”
The doctor leaves the room. Simone swings her legs, letting her bare heels knock against the table. The doctor returns. He looks grave and slightly nervous.
“Your results are in,” he says.
“I’ve been waiting.”
“It does not look good.” He is straightforward but kind. He puts the x-rays of Simone’s brain up on the lit board. The dark shape of a brain is covered in dark blobs, as if some quick-moving substance has leaked.
“Right now,” he says, pointing to an area on the left side of the brain (Simone squints), “you are probably noticing that you’ve slowed down a bit, that things that used to be second nature are becoming more difficult.”
“Yes.” She thinks about pulling her shirt over her head this morning. Yes, that was more difficult than usual. But the buttons are very small, which could account for the fumbling. There is the squinting, that’s new. The doctor is waiting for her to speak. She obliges him.
“What does it mean?”
“In neurological terms, it means total devastation.”
“I am dying.”
“Yes, that’s right. I’m sorry but that is correct.”
He waits for a response.
“I am very sorry,” he says. And he is. She’s so young!
“I’m ready for this.”
“I don’t think you are.” She clears her throat. Her vision is fuzzy for a moment and then rights itself.
“We’d like to put you in a test group.”
“No, I’d rather not. No groups.”
“It may give us some important results.”
“It sounds like asking for answers; there are none to be found. I’m not what you’d call a ‘group gal.’ I’m not a joiner.”
“Listen, you don’t have to throw in the towel just yet. There are treatments…”
“I burn candles sometimes at night when I’m alone.”
“I’m just saying that sometimes I get dramatic about things. I mean, I’m human, I’m just not delusional about cures and such.”
“Decadent, I know.” She suppresses a giggle.
“Listen, you need to have an operation.” He tries to make his voice authoritative, fatherly.
“I don’t trust you.”
“There is something wrong with your brain.”
“Really? Wait. Which group are you with? What’s your religious order? I do not want a confessor.”
“I’m a doctor, not a priest. I took a different kind of oath.”
“Exactly. But affliction will make me free. I say bring it on.”
“This operation I want to tell you about could save you.”
“But it probably won’t.”
“No, it probably won’t. But it might. Early trials-”
She interrupts him, which surprises him. She looks so sweet and insubstantial, like she needs to eat a sandwich. “The odds are what?” Her voice is clear and robust and authoritative. She could be standing behind a podium. She could be handing him the communion wafer that he receives each week at his suburban church next to Starbucks. The doctor clears his throat, and when he speaks he’s horrified that his voice resembles a squeak. “There’s a 5% success rate. Perhaps.”
“Nothing will save me but waiting.”
“You will die if you wait.”
“I’ll die anyway. You just told me so. I don’t bet, but if I did, I wouldn’t bet on those odds.”
The doctor pauses. This patient is not interested in the proof he has presented on the light board. There’s her brain – right there! How can she not see? This 5% is all she has! She doesn’t want to hear about research or statistics. She is opaque, dying, and ridiculous.
“Why?” he begins dolefully, and then stops. His relieved, at least, that his deep doctor’s voice has returned.
“I will tell you what I think about this.”
“I’m sure you will.”
“The most beautiful life possible has always seemed to me to be one where everything is determined, either by the pressure of circumstances or by impulses such as I have just mentioned, and where there is never any room for choice.”
“Listen, you are terminally ill.”
“That sounds uncomfortable.”
“It will be; I am worried for you. You need to make arrangements for yourself.”
“You have someone who can help you when things get difficult?”
She nods. “Yep.”
“Are you…can I get you someone to talk to? I don’t want you to be afraid.”
“To be dying is to be nailed to a grim certainty, to be spiritually naked while dancing drunk on a table in public, drooling and farting.”
“You do have these things? Help, I mean?”
“No, but I have an imagination.” The doctor sees an in; he will appeal to her sense of imagination.
“We can do more scans of your brain. It will show us how far the disease has progressed.” He pauses. “The drooling and farting will continue and worsen, I’m afraid.”
“But what will the inside of my mind look like? What will I see? In the scans you’re suggesting, I mean.”
“You’ll see the map of your brain. Like this one, just here.” He flips on the light again.
“That means nothing to me.” Together they look at the blobs on Simone’s brain.
“This is a scientific process; it’s a medical thing. How can I make you understand?”
“This is death; it is a human thing. Don’t you get it? Don’t you understand?”
“You do not have to go out like this; there are places, people.”
“We must love everything completely, in its full expression.”
The doctor pauses, sighs, and looks at the ceiling. There is a poster on the ceiling for patients to look at when they lie back and the doctor (usually him) does something uncomfortable to them. It is a picture of a tree and near the trunk is written the word “Persevere.” He wants to rip it down and feed it to a rabid animal with enormous, blood-tipped teeth.
“I am miserably inadequate.”
He gives her a hard stare. “Actually, and I don’t mean this as a license for you not to seek treatment, but for now you do seem to be doing okay. Are you enjoying activities you once enjoyed? Are you isolating?”
“You mean activities like isolating? Yes.”
“Right. Listen, have I made you angry?” He’s going to tell a nurse right after this appointment to get rid of that poster. Maybe some fake stars or something? A string of Christmas/holiday lights? A few white lights? Could they rig a Kindle up there with extra big words and give the patient a stick to poke the page turning button?
“I’m angry with God, sure. Look around.” She waves her hand. He looks around at the empty room, ignoring the persevering tree because it will only make him angry and he needs to stay calm. “Look at the world. Aren’t you?”
“I don’t think about God.”
“Well, he thinks about you. And he thinks about me. It’s a relationship like any other.”
“He thinks about us. You believe this.”
“Of course. Why wouldn’t he?”
“Why would he?”
“The action of grace in our hearts is secret and silent. We need him for that.”
Simone and the doctor look at one another. He takes a breath.
“This could take a while, the progression of your disease. I might call it a kind of…marathon, for lack of a better word.”
“I am patient.”
The doctor bites his lip, fiddles with his stethoscope. He’s unsure what to do, and also, unaccountably, on the verge of tears. Who is this woman? Who is responsible for that poster on the ceiling? Why is he standing in this room?
“You will let me know if you need something?”
“I require nothing but to wait.”
The doctor holds out his hand and Simone shakes it. Her grip is stronger than he expected. His hand feels clamped, almost trapped, inside her thin little muscle of a hand. He realizes, with despair and confusion, that he’d like her to clutch at him, beg him to make her well. He blushes. She lets go of him and he leaves the room.
INTERIOR – DAYLIGHT – DOCTOR’S PRIVATE OFFICE WHERE NO PATIENTS ARE ALLOWED
The doctor is speaking his patient notes into his tape recorder when he sees Simone striding across the parking lot.
EXTERIOR – DAYLIGHT – PARKING LOT OF BIG & GLASSY & WHITE MEDICAL BUILDING
Simone is wearing baggy trousers, short black boots and a slouchy top. Her hands are lifted to the sky, footsteps light and springing. She starts to skip.
INTERIOR – DAYLIGHT – DOCTOR’S PRIVATE OFFICE WHERE NO PATIENTS ARE ALLOWED
He turns off the recorder and presses “erase.”