The Bright Hour
Page 19
We stand like two people in the middle of that act in the exam room for some time: John’s arms around me, my head in his chest, neither one of us ready to shift the weight, let go.
25. XXX
I call Ginny to tell her I made it into the trial.
“Yay!” she wheezes. “We are now both official guinea pigs of the medical system.”
The tumors in Ginny’s lungs have grown enough to cause her chest to fill with fluid—pleural effusion—which makes it hard for her to talk or breathe deeply. Or maybe it’s the immunotherapy flare. Either way, they put in a drain to make her breathing easier.
“I basically have a tap in my back now,” she says. “I’m never having sex again.”
“Oh come on,” I say. “I bet there is a whole subculture for people who are into that. Medical equipment fetishes. You just need to search the Internet and find them.”
“Do you really think I haven’t done that already?” she says—laughing, coughing.
26. The Fireplace
In his biography Emerson: The Mind on Fire, Robert Richardson writes that before Emerson climbed the stairs to his bed for the last time at his home in Concord—six days before he died—he insisted on closing up his study himself: fastening the windows, latching the shutters, and separating the coals still glowing in the fireplace. I picture his long body—addled by dementia, weak and feverish with pneumonia—gripping the poke, edging the ashes, nosing at the deep orange embers. Maybe they seemed beautiful—their rich, mysterious warmth.
Throughout his life, he wrote about how he loved the image of smaller flames merging into a larger fire: a metaphor for the creative urge as a conduit for spiritual connection. “A spark of fire is infinitely deep, but a mass of fire reaching from earth upward into heaven, this is the sign of the robust, united, burning, radiant soul,” he wrote in his journal (1842).
The spotless orange sunrise on the hills by Walden Pond. Lyla bathed in light on the folding chair as the sun dips below the highway. My father with his hand on my mother’s forehead as she rants for orange through the night.
27. Well of Mercy
I decide I need some time to write and be alone, so I sign up to spend a few days at a retreat center and convent about an hour from home—Well of Mercy. It’s run by Catholic nuns, but they say they’ll take anyone—in fact, my mom went there once several years back.
“It’s such a gift to step away from the world for a bit,” I remember her saying, “although it was really nice to come home.”
The place is calm and cheerful, with huge unpaned windows staring into the woods. There are walking trails and a labyrinth and a hot tub. There are warm simple meals and warm simple rooms. Signs everywhere asking for quiet. And still, from the moment I step inside I am filled with darkness—with complete terror.
I suppose I felt it building before I even left home, as I was packing my bag in my bright, quiet bedroom that morning after the kids left for school—readying myself to leave them. I am practicing, I thought. This is just practice.
And building more as I drove along the bright, quiet highway toward the mountains—then down the country road with its goats and donkeys and lifeless tractors and leafless trees, then up the long dirt drive and down into the hollow where the convent was hidden. And building in the soft, warm bosoms of the sunny nuns who welcomed me at the door. Building in such a way that I could barely look them in the eye. Building as I closed the door to my room and set down my bag on the bed.
I’ve had panic attacks before, but not in more than a decade: before kids, before the diagnosis. It’s suffocating: darkness looking at darkness. Like lying in a wooden box or a metal tube. Nowhere to look that is looking away. Turning our heads ceaselessly this way and that.
I wonder if this was the room where my mom slept, I am thinking, my chest tightening—a deep sense of being torn from something, ripped and pushed. The thought doesn’t help me. I try to calm myself by unpacking my pajamas, my toiletries. My hands are shaking. I wonder if I am going to throw up.
There is a small mirror above the dresser. I peer into it. That is my face: I am still here, although I look very old. I look at my phone. I have no service, but I can feel that John and the kids are out there—their world spinning along. And I am here—separate, cut off, alone. I say aloud, “You can go home. You don’t have to stay here.” And I say: “That sun better not try setting or I am going to be in trouble.”
I try Relaxation Jon breathing. I try counting. I stand at the window, my pulse racing, my body aching, until the sobs come and throw me onto the bed.
“I am not ready for this,” I yell against the silence into my pillow. I am not ready to be away. I will kill myself if I have to be away like this already. I will close my eyes and hold my breath until my heart explodes. Or scream. Maybe I will scream.
I wake up hours later, and there are a few minutes of light left in the sky. I do not feel better, but I force myself to stand up, and pull on my boots. I rustle through my pill bag until I find some Xanax and I walk out the back door toward the trailhead and into the woods.
I don’t walk very far. I can’t. Just enough to hear my feet against the earth, the leaves crunching along the trail that traces beside a shallow creek, which is not frozen—but is very, very cold. Soon, one of the nuns rings the dinner gong, and I am able to take my weak smile and flushed cheeks and carry myself to dinner.
* * *
Later that evening I climb up to the top of the gravel road to get cell service and call John. The warm lights of the convent fill the hollow below me.
“This doesn’t bode well. Even when you’re not here, the kids still prefer to talk to you,” says John. “Freddy keeps popping up in the doorway and then saying “oh” and going back to his room. Benny keeps hollering out your name from his bed to tell you things. Just now he yelled, ‘Hey, Mom, wanna hear my top three favorite ungulates?’ What am I even supposed to say to that?”
“Just say ‘Absolutely,’ ” I say. “He doesn’t care. He mainly likes to hear himself talk.”
I tell him about the panic attack.
“Whoa,” John says. “What are you thinking brought it on?”
It is full-on dark all around me now. I can see the nuns moving around down inside the lodge about fifty yards away.
“Being away from you guys, I guess,” I say. “A sense of how much smaller my world is lately. It’s intense here. Despite the cheery teal carpet, I feel like all of the world’s weightiest questions have passed through these guest rooms.”
I’m picturing my mom: her little black suitcase, her yoga mat, her delicate body curled in the twin bed, imagining what she still had to face.
“I’m sure they have,” says John.
“I took a little walk,” I tell him. “I know that’s what Emerson would recommend.”
The grounds here remind me a bit of Concord—farmland and woods, a forest of old hardwoods, birches and boulders, a ridge of bare branches like a wispy limbo between the earth and the sky. I could be on the paths of Walden or Estabrook if I didn’t know better.
Emerson developed the pneumonia that took his life after walking too long in those woods. He was nearing eighty. “April 1882, a raw and backward spring,” wrote his son Edward, the doctor—my great-great grandfather. “He caught cold and increased it by walking out in the rain and, through forgetfulness, omitting to put on his overcoat.”
I picture each of these moments like cells—growing, dividing, multiplying. Emerson in the front hall; Emerson in the rain of the garden; stumbling in the woods; wet feet, forehead burning with fever by the fire, drifting in and out of sleep, pushing the embers in the grate—unsteady, a few sparks crackling and jumping forth to maybe join the greater fire—the one reaching from earth to heaven; Emerson in his bed upstairs, his body growing cold, waiting, knowing what he already knew nearly fifty years ago, and then his bones carried out through the entry.
“So what are they?” I say to John. “The three best u
ngulates?”
“According to Benny they are donkeys, pigs, and Spanish ibex,” says John.
My chest twists with how badly I want to see them, even though it’s been less than a full day. It is clear there will not be enough days. “I can’t do this,” I tell John. “I’m coming home tomorrow. I’m such a wimp.”
“You’re not though,” says John. “I get it. Maybe you needed to go there to really cry.”
“Maybe,” I say. “And to realize I don’t ever want to be away from you again until I have absolutely no choice.”
“I have no problem with that,” he says.
The next morning as I race toward home in the car, I feel like a spring of relief has been unearthed—a flood, the forceful waters of a birth.
28. The Ride Home
Throughout the fall, John and I take the kids to a family support group at the cancer center. The parents all meet in one room, and the kids go off for activities in another. The parents are a mixed group: lung, brain, bone, stomach, blood, skin, breast—different stages. We go around the circle and we all basically say the same thing in different ways: We are terrified. We are double terrified by how we are supposed to deal with this with our kids.
One woman, whose husband was given a few months to live but is doing well at the moment, says, “People don’t get it. They think our nightmare is over because he is feeling better. But we know better. We know we are just riding the crest of the roller coaster right now.”
When we meet up with the kids at the end of the night, they are hyped on new friendships and new information.
“That was awesome!” they both say, bouncing off the chairs in the lounge. “We got to learn how cancer cells grow by blowing bubbles! And we got to see real cancer on a real X-ray!”
“Did you talk at all about your experience with my cancer?” I ask as we walk to the parking garage.
“Sure,” says Benny. “I told them it was really bad at first when you were sick all the time, but now you are much better.”
Freddy stops walking and looks straight at me. “Is that right, Mom? Are you much better?”
My head is full of thick curls and I no longer am constantly going to and coming from treatment, since the trial I am on uses pills instead of infusions. I don’t look like an obviously dying person—other than the cane. I’ve been wondering about the effect this might be having.
“I’m okay right now,” I say. “But you know my cancer won’t ever really get better.”
They have forgotten that part. As we get in the car, I can see they are both trying not to cry.
So I climb in the back seat between them and pull each of them close to me. I haven’t sat like this—John driving, me in the back beside them—since they each came home from the hospital as infants.
It’s late in the evening, and we have an hour drive back to our house from the cancer center. John reaches back and squeezes my knee and then turns the music up. The boys each lean their heads on me, and we hurtle together down the dark interstate toward home.
29. Memento mori
Remember, you must die: that’s the phrase that rises with me from the depths of sleep as John jumps from the hotel bed to shut off his iPhone alarm and I lie staring into the darkness while he showers. We are in Orlando, awake a half hour before sunrise. Remember you must die. From the Latin: memento mori.
John stumbles around filling water bottles and fumbling with the zippers on the backpacks. He brings me thin coffee in bed from a Styrofoam cup. I take a handful of ibuprofen and oxycodone. We decide it’s time to wake the kids, still dead to the world in the queen bed beside ours.
* * *
Outside, the sun begins to push up over the harbor: Portofino Bay. Shapes of quiet skiffs form in the water where they have been moored for the night. A heron swoops silently over the bow of one, and then moves on.
Nuclear troupes much like ours emerge from the shadows along the empty waterfront: a mom and a dad, a couple of kids. We are quiet, mostly, shuffling toward the launch at the docks—although some, particularly the kids, are starting to pick up speed now.
We pass through security, and as we wait on the teak bench—wet and glossy with morning dew—my fingers grope through my bag and find my wallet. Inside the clasp: a stack of small cards that my fingers sort—then re-sort—by feel: park passes, early entrance passes, Express Passes, resort keys.
We are headed—like all of those around us—into the park at Universal Studios. It is the day after Christmas. It is just over a year since I was given the terminal diagnosis: a new way to mark time. Memento mori, I’m still saying to myself.
We have been told it is essential to be among the first to the park in order not to be stampeded by the hordes of visitors to Harry Potter’s world in Diagon Alley and Hogsmeade. Freddy’s plan is to purchase a wand from Ollivanders. Benny wants to track down a purple pygmy puff to go with the pink pygmy puff he has at home. They both have been told by friends that they have to try the Butterbeer from the red carts parked along the main drag leading up toward Hogwarts. We must hurry.
* * *
Memento mori is a term I probably first learned in one of my art history classes in Florence: the subtle skull lurking in the corner of a drawing of fruit, reminding us of our frailty and inevitable death. Both the memento mori and the vanitas—a similar concept that juxtaposed worldly things (books, wine, musical instruments) with an image of death—became hugely popular in seventeenth-century art, during a time when everyone was pretty certain that the whole point of living at all was to get to the afterlife.
The American Puritans loved the memento mori, too: my crossed-armed ancestors, who otherwise rejected art because it was considered a temptation away from God, appreciated the depictions of skulls and other deathly representations as a way of embracing the notion that even in life, death is near—and getting closer.
* * *
Before it was used in art, memento mori was a phrase that originated with the ancient Roman practice of a successful general returning from battle being assigned a slave to follow him around, whispering in his ear: “Respice post te. Hominem te memento.”
“Look to the afterlife,” the slave was instructed to say in an effort to help the general avoid haughtiness from all the praise he received in the wake of his victory, “and remember you’re only a man.” Remember, says the world—you must die.
* * *
“Keep moving,” I’m saying to the kids as we step off the Hogwart’s Express and wind our way through the stanchions that will contain the crowds who show up when they open the gates to all who do not have special early entrance passes. “If you move quickly we can beat the masses.”
I have always been terrible at waiting in line—a trait I certainly inherited from my mother. Even if the Express Pass and early entrance pass hadn’t come included in our resort package, I would have probably sprung for it. Or obtained the necessary paperwork from my doctors to get one for free.
“I’ll sign whatever you need,” Dr. Cavanaugh said when we told her we were surprising the boys with a trip to Universal Studios. “It’s worth it—and you deserve it.”
She took her kids recently. “It’s such a brief window—when they’re old enough to enjoy it all and young enough to enjoy it all, too,” said the busy, world-renown oncologist. “You’ll have fun. You’ll have a complete blast.”
* * *
I’ve been to the real Portofino—once, on that tumultuous mother/daughter trip at age nineteen when I was learning all about memento mori. I remember the brightly painted buildings, the blue-green of the Riviera. I remember the fishing boats and the smell of coffee brewing.
I remember writing everything back to myself as we waited on the train platform—in a notebook where I had arrogantly etched ars longa, vita brevis: art is long, life is short. Something I had no doubt learned in a creative writing class. No wonder I had annoyed my mother so much. I remember her sitting beside me with her black backpack in her lap, working and
reworking stacks of paper with her fingers: our Eurail passes, our lire, our map, our reserved-seat tickets. I remember the cloud of stress embanked around her:
“Don’t talk to me—I’m counting! If you want to ever make it to Venice just leave me alone right now!”
* * *
Universal’s Portofino Bay Hotel: a re-creation of a real Italian resort town. It’s hard to keep track of the different levels of artifice here, and in some ways it reminds me of my own body. It looks intact—lovely, even, on the outside—but you can sense that on the inside something is not right.
The man-made river on which our water taxi transports us to the main entrance of the amusement park is a little greener than blue, with just the slightest tinge of too much chemical. I try to peer into the water for fish or turtles or gators as our gleaming wood hull pushes along the canal, but I cannot see a thing.
As we glide toward the park gates, I am wondering: Does a boat captain for a real boat on a fake canal driving real people to a fake world require a real pilot’s license?
King’s Cross Station—where we catch the Hogwart’s Express on Platform 9 3/4—is another a re-creation of a real place, with impatient crowds and a British ticket-taker and overflowing garbage cans making it entirely believable. A squirrel runs through the stiles.
“Was that a rat?” says Benny, jumping. “Do you think it’s rabid?”
“What?” John exclaims. “That was a squirrel! And no, I don’t think you need to worry about it being rabid.”
John is on edge, and has been consumed all morning with the decision of whether or not to take a Xanax. Given my intake of pain pills, he should probably be at the top of his parenting game. But: Antianxiety meds might just be what gets him there. A bottle of them—and just about every other pill in the world—rattle around in my bag next to our stack of passes.