Extraordinary Means (21 page)

I COULDN
’
T HELP
but hope that Sadie would make it. That, miraculously, she’d live until the first batch of protocillin arrived. That what she had, like the rest of us at Latham House, was curable. But deep down I knew the truth.

The treatment she’d asked for didn’t work, and she started to get sicker.

There were days where Sadie slept most of the time, where I bargained my way into the room and sat reading in a chair by her bed.

Sadie’s mom sat there, too, filling in Sudoku squares with a pencil and the occasional tear. A boyfriend, or fiancé, came and went, bald and sagging, bringing bags of health food and looking like he didn’t know what else to do. Marina sat with Sadie’s little sister, playing board games and bringing her a stack of fantasy novels. And Nick came by, with drooping flowers he’d picked down by the lake, although
I couldn’t tell you whether it was Nick or the flowers that looked more wilted.

On Wednesday, Sadie and I were alone in the room, and she was propped up in bed, making me paint her nails a bright purple.

“B-minus,” she said, inspecting my work. “You missed, like, half my thumbnail.”

“It’s hard!” I complained.

“Well, you better fix it, since I’ll probably wear this for the rest of my life,” she joked.

My jaw tightened.

“Sorry,” she said with a sigh. “Not funny. Please unremember every not-funny joke I’ve ever made.”

“So basically everything?” I said.

“Basically everything,” Sadie echoed, leaning back and closing her eyes.

For a moment, I thought she’d fallen asleep, and then she asked, very softly, “What do you think happens to us when we die?”

I wasn’t expecting that, and I wasn’t sure I had an answer.

“I don’t know,” I said finally. “Maybe it’s different for different people.”

“I have a theory,” Sadie said. “That life is gathering the raw materials, and when we die, we get to make patterns out of our lives and relive them in whatever order we want. That way I can spend forever repeating the days when I was really happy, and never have to experience any of the sad days.
So that’s how you live a really great life. You make sure you have enough good days that you want to go back to.”

Sadie swallowed thickly, and I could see that she was crying.

“Do you think I could go there, too?” I asked her. “And meet you in our good days?”

“I think you could,” Sadie murmured, her voice slowing. “I’ll meet you there. I’ll wait for you there. And I hope I’m waiting a very long time.”

SHE DIED ON
Friday, less than two weeks before the first protocillin injections were given at Latham House.

I wasn’t there.

Her mother held her hand as Sadie died, not of tuberculosis, but of the thing she’d been convinced would cure her.

She would have made it if Michael hadn’t attacked her. If she hadn’t gone into the woods that night. If I had gone with her. If people were less afraid of diseases they didn’t understand, and less horrified to find that, somehow, the invisible hand of contagion had come for them, too.

In AP Bio, I learned that the cells in our body are replaced every seven years, which means that one day, I’ll have a body full of cells that were never sick. But it also means that the parts of me that knew and loved Sadie will disappear. I’ll still remember loving her, but it’ll be a different me who loved her. And maybe this is how we move on. We grow new cells to replace the grieving ones, diluting
our pain until it loses potency.

The percentage of my skin that touched hers will lessen until one day my lips won’t be the same lips that kissed hers, and all I’ll have are the memories. Memories of cottages in the woods, arranged in a half-moon. Of the tall metal tray return in the dining hall. Of the study tables in the library. The rock where we kissed. The sunken boat in Latham’s lake. Sadie, snapping a photograph, laughing in the lunch line, lying next to me at the movie night in her green dress, her voice on the phone, her apple-flavored lips on mine. And it’s so unfair.

All of it.

After Dr. Barons refused to let me up to see her and told me the news, I walked back to the cottages, through the early dusk that had come with the end of daylight savings, and banged on the door of Cottage 7 until Genevieve came down and opened it.

I pushed past her, not caring, and then I realized I didn’t know which room was Sadie’s.

“You’re not allowed in here,” Genevieve called after me.

“I’m looking for Sadie’s room?” I asked, and she must have seen it in my eyes that I wasn’t budging, because she took me to it.

I opened the door, and suddenly, I was surrounded by Sadie. The twinkle lights wrapped around her bed, the color-coded towers of books, the old trunk in the corner, which she’d covered with Harry Potter stickers. The mint
plant she was growing on the windowsill, which explained why I’d always thought she smelled of fresh mint. The mug shaped like a British telephone booth, filled with different-colored Sharpies. The world map over her bed with a cluster of pins in Southern California, and one in Hawaii.

I wanted to curl up in that room forever, along with all of Sadie’s hopes and dreams. Along with her unfinished travel map and orphaned mint plant. Instead, I took the memory card out of her camera. And then I went back to Cottage 6 and tried very hard to dissolve.

THAT NIGHT WAS
unbearable. I didn’t want to go to dinner, to sit at our table just the three of us, as though the empty chairs were tombstones. I wanted to remember the table the way I’d seen it on my first day, when it had seemed the most vibrant of all, its occupants practically glowing as they sat there laughing. Now, it was the gloomiest table at Latham House, and I didn’t think I could stand that. So I stayed behind.

Nurse Jim found me sitting on the floor of my room, in the dark, scrolling through her photos on my laptop. It was the closest thing to seeing her again, to having her there with me. But it wasn’t enough. God, it wasn’t enough.

“Dinner,” he reminded me.

“Strike,” I said.

He hesitated a moment.

“I’ll put you down as sick,” he said.

WHEN I FINALLY
did leave my room the next day, it was to bang on Nick’s door.

He opened it, looking as heartbroken as I felt. I’d gone over there to yell at him, but yelling wouldn’t do anything.

“Gonna hit me again?” he asked.

“What would that solve?”

“Well, if you’re not going to hit me, come on in,” he said, and I went inside, noting a trash can overflowing with apple juice boxes.

“God, I miss her,” Nick said, sinking onto his bed and burying his head in his hands. “I know she was your girlfriend, but she was my best friend, and I fucking miss her.”

“I do, too,” I said.

“I keep going over it,” Nick plunged on. “And I really think it’s my fault. If I’d been there, things might have gone differently.”

“They might not,” I said.

“I could have taken that guy,” Nick insisted, coughing.

“You couldn’t even take it when I hit you,” I said.

He shrugged, knowing it was true.

“I really want to be mad at you,” I told him.

“Because we’re in love with the same dead girl?” he asked. And he looked so broken that I couldn’t say any of the angry things I’d wanted to say. So I nodded and said yeah, because we were in love with the same dead girl.

THE WEDNESDAY THAT
the protocillin arrived, we all lined up in the gym after lunch. The nurses sat behind tables, with piles of syringes, and I tried not to look for the place where Sadie would have stood in line to receive her injection.

Nurse Monica plunged the needle into my arm, and the protocillin pinched as it entered my bloodstream.

“Dose one of fifty-six,” she said, typing it into her tablet. “Now can you rate your pain for me on a scale of one to ten?”

But I couldn’t. It seemed so wrong to me then that there were only ten options, only ten types of pain. Because I’m pretty sure there are hundreds of types of pain in this world, maybe even thousands. And none of these are numbers on the same scale. They all hurt differently, and amounts have nothing to do with it. They all hurt too much, and not enough.

“I’m waiting, honey,” Nurse Monica reminded me, and I tried to concentrate on my arm, on the serum that was flowing through it.

“Two,” I lied.

I CAN BARELY
remember those last few weeks at Latham. I know that we lined up each afternoon for our injections, and that after a few days, the tightness in my chest started to fade, and that after a week, I could take a deep breath without coughing.

It was strange to think that my insides were changing, that the version of myself who had been with Sadie was gone forever, and that as much as I wanted to live in the past, I had a long, gleaming future ahead of me. Latham House, which had once seemed to stretch endlessly into the distance, was now a relic of the past.

The sanatoriums were shut down, like they’d been before. We were removed from the world and then put back, as though nothing had changed. But we had. Without internet, without our phones, without being sure we had a future, it changed us. At least, I know it changed me.

And when my dad’s SUV pulled up outside Latham, and my parents climbed out, Mom crying, and Dad stiff but smiling, I knew that I hadn’t belonged to this place the way Sadie had. That my home was in the real world, and hers wasn’t, and she’d made her peace with that a long time ago.

But that didn’t make it any less painful that I wasn’t helping her carry her things out to her mom’s car. And it didn’t make it any less awful how she’d slipped from my life, and from her own.

I used to think a lot about the future, but now I spend my time thinking about the past. It sneaks in, even when I don’t want it to, while I’m sitting in a coffee shop doing my homework, or when I put on a shirt with my name inked into the collar from Latham’s laundry, or when the teacher calls on me in French class. And I know that I’ll eventually
need to figure out what I want to do with my life, but right now, enjoying it seems like a pretty good option, since it’s not like I can have what I really want.

What I want is for Sadie to be there outside her house, waiting for me on the curb. What I want is to spend a day at the beach that starts with us covering each other in sunscreen and laughing. What I want is to take her to my school carnival and promise her a medium-soda-sized wish if she can grab my hand on the swing ride. What I want is for her to grab my hand and lead me through the woods, back in time to that first moment I saw her, when we were thirteen.

Maybe, if I’d kissed her at summer camp, things would have gone differently. Maybe then we wouldn’t have caught TB, or wound up at Latham, or fallen in love.

But we did all those things. We grew up, and we grew sick, and we slunk unprepared toward our respective futures. Or lack of futures.

There’s a difference between missing someone and mourning them. And I hold out hope that one day I will no longer mourn Sadie, that I will simply remember her, and smile sadly, and then I’ll keep going. Because that’s all you can do in this world, no matter how strong the current beats against you, or how heavy your burden, or how tragic your love story. You keep going.

It took a lot of things to make me realize that. To make me see the path, as opposed to the destination. I’d been sitting
in the coffee shop and thinking for a long time. It was getting late, and my parents were expecting me at home, since it was a school night. So I packed up my books and walked into the parking lot.

I climbed in my car and started to head home, my visor down against the glare of the sun. But at the last minute, I turned left, because I never had before, and because I had time to go down a different road.

A couple of thank-you notes, which probably still won’t get me out of sending Christmas gifts, but it was a nice try, wasn’t it?

To Katherine Tegen, my amazing editor, for believing in this book even when I was convinced it was a pile of potato salad and not actually a book at all. To Merrilee Heifetz, my incredible agent, whose encouragement and guidance was overwhelmingly wonderful. To the University of Pennsylvania’s Department of Medical Ethics and Health Policy, with particular gratitude to Professor Lance Wahlert, for giving me poems about tuberculosis and letting me write my master’s thesis on young adult disease narratives. Emily Kern and Abbey Stockstill, for the hours spent researching together in the library, and the very sincere question of “This book looks perfect, how fluent is your German?” My parents, who were very lovely about the time I spent five days in their guest room frantically finishing this book while essentially holding their poodle hostage, and whom I should note
are very lovely people in general. Bru Coffee House, you know what you did, and what you did was give me internet and coffee and a quiet place to write, so basically I’m in love with you. Nova Ren Suma, for a heroic rescue. To Corrie and Miguel, my coffee-shop companions. Development: Daniel Inkeles. No thank-you to Netflix; I am dis-acknowledging you, wrecker of productivity. And, on that note, Tumblr, too. Evidently I still can’t write an acknowledgments without Tumblr. So it goes.

The story contained in these pages is a work of fiction. There’s no such thing as total-drug-resistant tuberculosis. No protocillin. No Latham House. I made it up, because I wanted to tell a story about what could happen, as opposed to what really is.

Tuberculosis is a disease that has affected mankind for most of human history. It’s characterized by cough, fatigue, weight loss, and fever; and for thousands of years, no one knew what caused it or how to treat it. As time went on, tuberculosis became known by a variety of names: phthisis, the white plague, the dread disease, consumption, and, finally, TB.

The threat of tuberculosis reached its peak during the nineteenth century. TB became so prevalent that in 1815 it caused one in every four deaths in England. Its victims included such a who’s who of philosophers, writers, and musicians that TB was believed to affect those with artistic temperaments, heightening their genius as they faced early death. The Brontë sisters, Jane Austen, Elizabeth Barrett Browning, Henry David Thoreau, Robert Louis Stevenson, Kafka, Chopin, Chekhov, Voltaire, Rousseau, and Rembrandt all died from tuberculosis.

At the height of the nineteenth century’s Romantic Movement,
illness was seen as a mark of distinction, and the pallor and waiflike appearance that tuberculosis lent its victims became fashionable. Women of high society copied the aesthetic, powdering their faces and feigning a lack of appetite. The art and theater of the nineteenth century is filled with wan, ethereal heroines, many of whom fall into a consumption brought on by a broken heart or an unrequited love, then die an easeful death. The idea that TB caused a “good” death was one that the Romantics seized upon, lauding TB as a pleasant way to die, even though it was far from the truth.

This widespread romanticization of tuberculosis may seem absurd now, but at the time, little was known about the disease, and most of the treatments offered were guesswork. Tuberculosis was considered a death sentence, and the sick were kept at home with the windows tightly sealed, passing the germs to their family members, who frequently fell sick as well. A few doctors advised their patients to set off for better climates, believing that fresh air and pure food would benefit them more than city living.

In 1854, a German doctor named Hermann Brehmer, himself suffering from TB, founded an institute that treated tuberculosis in the Bavarian Alps. After he reported beneficial results, others followed suit, and the sanatorium movement was born. Dr. Edward Livingston Trudeau founded the first US sanatorium in the Adirondacks in 1882, and later that year, German physician Robert Koch discovered the bacillus that caused TB, proving that the disease was contagious. The sanatoriums, which removed patients from their crowded surroundings, had unknowingly prevented the disease from spreading. Soon after Koch’s discovery, the invention of the X-ray allowed doctors to track the progress and severity of a
patient’s disease. Over the next few decades, nearly a thousand sanatoriums opened across Europe and the United States.

The sanatoriums provided a dual function, both isolating the sick from the general population and enforcing rest, gentle exercise, fresh air, and healthy eating. No other treatment had any impact on the disease, and so patients set off for distant sanatoriums to “take the rest cure,” as it was called, hoping their lungs would wall off the infection. But isolating children in sanatoriums made it difficult for them to continue their schoolwork. Open-air schools, which offered fresh air, rest, and nutritious food, sprung up across the United States and Europe, enrolling children with TB.

And still the cure for tuberculosis eluded doctors and scientists. Many patients spent years at sanatoriums, which ranged from crowded, state-run facilities with rows of cots, to private institutions that resembled fancy resorts. A stay at a sanatorium was a break from the stresses and concerns of everyday life, and some patients found it difficult to return home.
The Magic Mountain
, a German coming-of-age novel published in 1924, details a young man’s seven-year stay at a luxurious Alpine sanatorium. Its author, Thomas Mann, was later awarded the Nobel Prize in Literature.

For a hundred years, the sanatoriums filled to capacity, until isoniazid, the miracle drug that cured tuberculosis, was introduced in 1952. Tuberculosis began to fade from memory, replaced with the far more pressing threats of HIV and cancer, until the hectic fever of the tortured artist was nearly forgotten.

These days, when we come across stories in which characters cough blood into a handkerchief, then die of “consumption,” it seems like a made-up illness or a quaint melodrama. But TB is far
from erased. In recent decades, a new form of tuberculosis has risen, evolving a resistance to the medications that treat it. This multi-drug-resistant TB, which is found primarily in the developing world, had more than four hundred and fifty thousand cases reported in 2012, with almost 10 percent of the victims suffering from the even more life-threatening form, extensively drug-resistant TB. While MDR- and XDR-TB are far from being a worldwide health crisis, the fact remains that tuberculosis has not yet been defeated.

So, what led me to this research, and to tell a story that reinvents the recent history of tuberculosis? I’m a bioethicist, and in graduate school for bioethics, I studied the history of medicine. It was 2009, the height of Twilight mania, and one late night in the library, I looked up the history of the vampire myth on a whim.

It turned out that the modern vampire legend was born in the nineteenth century from the symptoms of tuberculosis. Outbreaks of vampire hysteria frequently coincided with outbreaks of tuberculosis: as entire families died of TB, superstitions circulated that the first to die had returned from the grave to feed on surviving family members. I was fascinated. So I decided to write a novel about a sanatorium full of vampires.

But the more I researched tuberculosis, the more I began to imagine a less-fantastical story. While I was sitting in my Cinema of Contagion class, I realized TB had never been portrayed as part of the contagion genre. The disease was cured during the early days of germ theory and antibiotics, and had been so romanticized at its height that quarantine and fear of outbreak weren’t a central part of its narrative.

The TB sanatorium, despite providing an ideal framework for a coming-of-age story, rarely surfaced in literature and was nowhere
to be found in young adult fiction. But then, YA novels suffer from an absence of medical narrative in general. Adults have far more access to stories told through and about illness, both as fiction and nonfiction. Teenagers have only a handful of options that humanize the illness experience, and so, as a student of medicine and an avid reader of young adult novels, I set out to fix that.

I began to consider the journey into the land of illness as a metaphor, akin to Dante’s
Inferno
or
Gulliver’s Travels
. These days, that journey is more frequently represented by mental illness rather than physical: a patient is sent into confinement and, once away, enters a duplicate world with special rules. Only after they have been removed from their daily routine can they break free of its constraints and be cured, both metaphorically and medically, of what ails them.

I started to imagine an outbreak of a totally drug-resistant form of TB, not in the emerging world, but in the towns and cities of present-day America. I wondered what would happen if people fell ill with a long-term, contagious illness that modern medicine had no ability to treat. And then I wondered how a teenager would be transformed by the experience of moving from the institution of a school to the institution of a medical facility. TB is a disease of the young, after all. I began to invent a sanatorium for teens, borrowing elements from the open-air schools and from the private, spa-like sanatorium depicted in Mann’s
The Magic Mountain
, but adding in technology and a fear of contagion. Just like that, I had a setting for a novel.

What in
Extraordinary Means
is fact, and what is fiction? The name Latham House is borrowed from Dr. Arthur Latham, a prominent English physician who published manuals for the treatment of TB at the beginning of the twentieth century. The school-like
atmosphere of Latham House owes a debt of gratitude to Hailsham from Kazuo Ishiguro’s
Never Let Me Go
, another novel about an alternate medical timeline and the institutions it creates. TDR-TB, which I invented, is a worst-case scenario conjured from the increasingly worried headlines and new stories about swine flu, bird flu, whooping cough, and Ebola. TDR-TB’s negative response to the MDR- and XDR-TB medications is borrowed from an article I came across in a medical journal that detailed the increased mortality rate in MDR-TB patients when given a new, second-line medication. Protocillin, of course, is a made-up cure for a made-up illness. But the idea of access to care, where wealthy, insured patients at private sanatoriums like Latham House are given the medicine first, is very real. And the concept of an extraordinary means of preserving life, or a risky, optional treatment that doctors don’t recommend, is one I studied in graduate school, and one that fascinates me to this day. It’s the idea that the patient ultimately controls their own fate, and that sometimes deciding for yourself is the greatest freedom you can have within a system that sees patients as their diagnosis rather than as people.

Lane and Sadie are both characters who struggle with the question of what exactly counts as living one’s life. For each of them, their TB symbolizes a deeper issue. Lane arrives at Latham House so exhausted from his rigorous course of studies that he has become literally consumed by it. Sadie has internalized all her fears and, instead of taking action, has become afraid of living. The story in this book is not a story of what it means to be sick so much as a story of how it feels to be an outsider. But most important,
Extraordinary Means
is a story of second chances, and what it means to have hope that you’ll figure out your place in the world, and that you’ll be strong enough to get there.

Robyn Schneider, MBE