The Best American Essays 2014 (19 page)

I catch sight of Kendra watching Sandra's phone. She's wondering if this is what her future holds. I want to comfort her, to insist that everyone's disease turns out a little different. She tells me about sushi last night: it was good. Turns out she bought a painting. She shouldn't have, she says. She can't afford it. But she saw it hanging at the restaurant and couldn't resist. She shows me a picture on her phone: lush, braided swirls of oil paint curl from the corners of a parchment-colored square.

I think but don't say, Fibers.

“You know,” she says, voice lowered, “it reminds me a little of those things.”

I get a sinking feeling. It's that moment in a movie when the illness spreads beyond its quarantine. Even when Kendra leaves this kingdom of the sick, she finds sickness waiting patiently for her on the other side. She pays $300 she can't afford just so she can take its portrait home with her.

 

The organizers are holding a lottery to give away some inexpensive microscopes: a handful of miniature ones like small black plums, and their larger cousin the EyeClops, a children's toy. I win a mini, but I'm sheepish as I head up to the stage to claim it. What do I need a scope for? I'm here to write about how other people need scopes. Everyone knows this. I'm given a small, square box. I imagine how the scene will play out later tonight: examining my skin in the stale privacy of my hotel room, facing that razor's edge between skepticism and fear by way of the little widget in my palm.

I give my miniscope to Sandra. I give it to her because she is sick of using her jeweler's loupe, because she is sad she didn't get one, and because I feel self-conscious about winning one when I wasn't even looking for fibers in the first place.

“That's so generous,” she says.

But maybe it wasn't generous. Maybe it was the opposite. Maybe I'd just taken hours of her life away and replaced them with hours spent at the peephole of that microscope, staring at what she wouldn't be able to cure.

“I can be myself only when I'm here” is something I heard more than once at Westoak. But every time I left the church, I found myself wishing these patients could also be themselves elsewhere, could be themselves anywhere. I think of Kendra, terrified by the same assurances that offered her validation. She had proof of fibers in her skin but no hope of getting them out, only a vision of what it might look like to be consumed by this disease entirely—a thousand bloody photographs on a laptop, or a soup of larvae on her phone.

A confession: I left the conference early. I actually, embarrassingly, went to sit by the shitty hotel pool. I baked bare-skinned in the Texas sun, and I watched a woman from the conference come outside and carefully lay her own body, fully clothed, across a reclining chair in the shade.

 

I've left the kingdom of the ill. Dawn and Kendra and Paul and Sandra remain. But I still feel the ache of an uncanny proximity. “Some of these things I'm trying to get out,” Kendra told me, “it's like they move away from me.” Sometimes we're all trying to purge something, and what we're trying to purge resists our efforts. These demons belong to all of us: an obsession with our boundaries and visible shapes, a fear of invasion or contamination, an understanding of ourselves as perpetually misunderstood.

But doesn't this search for meaning obfuscate the illness itself? It's another kind of bait, another tied-and-painted fly: the notion that if we understand something well enough, we can make it go away.

Everyone I met at the conference was kind. They offered their warmth to me and to one another. I was a visitor to what they knew, but I have been a citizen at times, and I know I'll be one again. Now my skepticism feels like a violation of some collective trust. The same researcher who told me about “the biggest joke in the world” also told me this: “When I heard of your interest, I felt genuine hope that the real story would be told accurately and sensitively.” I can't forget this hope. I don't want to betray it.

“Sit down before fact as a little child,” wrote the nineteenth-century biologist Thomas Huxley, in a passage quoted by one of the speakers at Westoak, “and be prepared to give up every preconceived notion, follow humbly wherever and to whatever abyss Nature leads, or you shall learn nothing.”

I want to follow humbly; I want to believe everyone. But belief isn't the same thing as compassion, or sorrow, or pity. It wasn't until the seventeenth century that the words
pity
and
piety
were completely distinguished. And what I feel toward this disorder is a kind of piety—an obligation to pay homage, or at least accord some reverence to these patients' collective understanding of what makes them hurt. Maybe it's a kind of sympathetic infection: this need to go-along-with, to nod-along-with, to agree.

Paul said, “I wouldn't tell anyone my crazy-ass symptoms.” But he told them to me. He's always been met with disbelief. He called it “typical.” Now I'm haunted by that word. For Paul, life has become a pattern and the moral of that pattern is,
You're destined for this.
The disbelief of others is inevitable and so is loneliness; both are just as much a part of this disease as any fiber, any speck or crystal or parasite.

I went to Austin because I wanted to be a different kind of listener than these patients had generally known: doctors winking at their residents, friends biting their lips, skeptics smiling in smug bewilderment. But wanting to be different doesn't make you so. Paul told me his crazy-ass symptoms and I didn't believe him. Or at least I didn't believe him the way he wanted to be believed. I didn't believe there were parasites laying thousands of eggs under his skin, but I did believe he suffered as if there were. Which was typical. I was typical. In writing this essay, how am I doing something he wouldn't understand as betrayal? I want to say,
I heard you.
To say,
I pass no judgments.
But I can't say these things to him. So instead I say this: I think he can heal. I hope he does.

FROM
The New Yorker

 

M
Y FAVORITE GAME
when I was a child was Mummy and Explorer. My father and I would trade off roles: one of us had to lie very still with eyes closed and arms crossed over the chest, and the other had to complain, “I've been searching these pyramids for so many years. When will I ever find the tomb of Tutankhamun?” (This was in the late seventies, when Tut was at the Met, and we came in from the suburbs to visit him frequently.) At the climax of the game, the explorer stumbles on the embalmed pharaoh and—brace yourself—the mummy opens his eyes and comes to life. The explorer has to express shock, and then says, “So, what's new?” To which the mummy replies,
“You.”

I was not big on playing house. I preferred make-believe that revolved around adventure, featuring pirates and knights. I was also domineering, impatient, relentlessly verbal, and, as an only child, often baffled by the mores of other kids. I was not a popular little girl. I played Robinson Crusoe in a small wooden fort that my parents built for me in the back yard. In the fort I was neither ostracized nor ill at ease—I was self-reliant, brave, ingeniously surviving, if lost.

The other natural habitat for a child who loves words and adventure is the page, and I was content when my parents read me
Moby-Dick, Pippi Longstocking
, or
The Hobbit.
I decided early that I would be a writer when I grew up. That, I thought, was the profession that went with the kind of woman I wanted to become: one who is free to do whatever she chooses. I started keeping a diary in third grade and, in solidarity with Anne Frank, gave it a name and made it my confidante. To this day I feel comforted and relieved of loneliness, no matter how foreign my surroundings, if I have a pad and a pen with which to record my experiences.

I've spent the past twenty years putting myself in foreign surroundings as frequently as possible. There is nothing I love more than traveling to a place where I know nobody, and where everything will be a surprise, and then writing about it. The first time I went to Africa for a story, I was so excited that I barely slept during the entire two-week trip. Everything was new: the taste of springbok meat, the pink haze over Cape Town, the noise and chaos of the corrugated-tin alleyways in Khayelitsha township. I could still feel spikes of adrenaline when I was back at my desk in New York, typing, while my spouse cooked a chicken in the kitchen.

But as my friends, one after another, made the journey from young woman to mother, it glared at me that I had not. I would often listen to a Lou Reed song called “Beginning of a Great Adventure,” about the possibilities of imminent parenthood. “A little me or he or she to fill up with my dreams,” Lou sings, with ragged hopefulness, “a way of saying life is not a loss.” It became the soundtrack to my mulling on motherhood. I knew that a child would make life as a professional explorer largely impossible. But having a kid seemed in many ways like the wildest trip of all.

I always get terrified right before I travel. I become convinced that this time will be different: I won't be able to figure out the map, or communicate with non-English-speakers, or find the people I need in order to write the story I've been sent in search of. I will be lost and incompetent and vulnerable. I know that my panic will turn to excitement once I'm there—it always does—but that doesn't make the fear before takeoff any less vivid. So it was with childbearing: I was afraid for ten years. I didn't like childhood, and I was afraid that I'd have a child who didn't either. I was afraid I would be an awful mother. And I was afraid of being grounded, sessile—stuck in one spot for eighteen years of oboe lessons and math homework that I couldn't finish the first time around.

I was on book tour in Athens when I decided that I would do it. My partner—who had always indicated that I would need to cast the deciding vote on parenthood—had come with me, and we were having one of those magical moments in a marriage when you find each other completely delightful. My Greek publisher and his wife took us out dancing and drinking, and cooked for us one night in their little apartment, which was overrun with children, friends, moussaka, and cigarette smoke. “Americans are not relaxed,” one of the other guests told me, holding his three-year-old and drinking an ouzo. Greece was falling apart. The streets of Athens were crawling with cats and dogs that people had abandoned because they could no longer afford pet food. But our hosts were jubilant. Their family didn't seem like a burden; it seemed like a party. The idea bloomed in my head that being governed by something other than my own wishes and wanderlust might be a pleasure, a release.

I got pregnant quickly, to my surprise and delight, shortly before my thirty-eighth birthday. It felt like making it onto a plane the moment before the gate closes—you can't help but thrill. After only two months, I could hear the heartbeat of the creature inside me at the doctor's office. It seemed like magic: a little eye of newt in my cauldron and suddenly I was a witch with the power to brew life into being. Even if you are not Robinson Crusoe in a solitary fort, as a human being you walk this world by yourself. But when you are pregnant you are never alone.

 

My doctor told me that it was fine to fly up until the third trimester, so when I was five months pregnant I decided to take one last big trip. It would be at least a year, maybe two, before I'd be able to leave home for weeks on end and feel the elation of a new place revealing itself. (It's like having a new lover—even the parts you aren't crazy about have the crackling fascination of the unfamiliar.) Just before Thanksgiving, I went to Mongolia.

People were alarmed when I told them where I was going, but I was pleased with myself. I liked the idea of being the kind of woman who'd go to the Gobi Desert pregnant, just as, at twenty-two, I'd liked the idea of being the kind of girl who'd go to India by herself. And I liked the idea of telling my kid, “When you were inside me, we went to see the edge of the earth.” I wasn't truly scared of anything but the Mongolian winter. The tourist season winds down in October, and by late November, when I got on the plane, the nights drop to twenty degrees below zero. But I was prepared: I'd bought snow pants big enough to fit around my convex gut and long underwear two sizes larger than I usually wear.

To be pregnant is to be in some kind of discomfort pretty much all the time. For the first few months, it was like waking up with a bad hangover every single morning but never getting to drink—I was nauseated but hungry, afflicted with a perpetual headache, and really qualified only to watch television and moan. That passed, but a week before I left for Mongolia I started feeling an ache in my abdomen that was new. “Round-ligament pain” is what I heard from everyone I knew who'd been pregnant, and what I read on every prenatal website: the uterus expanding to accommodate the baby, as he finally grew big enough to make me look actually pregnant instead of just chunky. That thought comforted me on the fourteen-hour flight to Beijing, while I shifted endlessly, trying to find a position that didn't hurt my round ligaments.

When my connecting flight landed in Mongolia, it was morning, but the gray haze made it look like dusk. Ulaanbaatar is among the most polluted capital cities in the world, as well as the coldest. The drive into town wound through frozen fields and clusters of felt tents—
gers
, they're called there—into a crowded city of stocky, Soviet-era municipal buildings, crisscrossing telephone and trolley lines, and old Tibetan Buddhist temples with pagoda roofs. The people on the streets moved quickly and clumsily, burdened with layers against the bitter weather.

I was there to report a story on the country's impending transformation, as money flooded in through the mining industry. Mongolia has vast supplies of coal, gold, and copper ore; its wealth was expected to double in five years. But a third of the population still lives nomadically, herding animals and sleeping in
gers
, burning coal or garbage for heat. Until the boom, Mongolia's best-known export was cashmere. As Jackson Cox, a young consultant from Tennessee who'd lived in Ulaanbaatar for twelve years, told me, “You're talking about an economy based on yak meat and goat hair.”