ALMOST MIDNIGHT, AND THE SANDMAN AND I ARE NOT on speaking terms. Caitlyn sleeps with her favorite stuffed monkey across the room: I can hear the reassuring slow sounds of her breathing even through the insect chatter that pours through our screen walls. Today I nearly convinced myself that my insomnia stemmed from my excitement over the upcoming excursion into the jungle . . . but I am no longer a child. It has been years since excitement kept me awake.
Still, I can’t help but wonder how much of my insomnia is the result of my illness and how much may have been exacerbated by my knowledge of the disease. If I did not know about the symptom, if I did not recognize and prepare for it by supplying my bed with notebooks, flashlight, and other quiet entertainments, would I sleep easier? Or would I drive myself crazy with frustration and fear?
Impossible to tell—one of those “if a tree falls in the woods, does it make a sound?” types of questions.
(I can attest to the fact that a tree falling in the rainforest does in fact make quite a loud sound. Last night Caitlyn was awakened by what I thought was some sort of fireworks celebration—a long series of loud popping noises, rustling, then a tremendous crashing finale. I soothed Caitlyn and she went back to sleep; this morning Lazaro told us that a tree had fallen in the night. The popping sounds were snapping roots and vines that had staked their lives on the stability of the tree. Now the lodge staff will use the carcass—already Lazaro has planned to make two canoes from the mighty trunk. I hope I am as useful when I can no longer stand upright.)
Perhaps it is fear that hammers at my subconscious and keeps me awake. Perhaps it is complete exhaustion. My teammates have all gone to bed. Wiped out from the heat and a full day of canopy work, they have been silent and in their darkened bungalows for hours. I’m sure they think I am asleep, too, though this morning Deborah Simons did ask if my mattress was uncomfortable. Apparently I have dark circles under my eyes. I haven’t really taken the time to look, and that small mirror in the bathroom does not tempt me to linger. . .
Night comes suddenly here, with the sun setting just before six and full dark settling in with a swiftness that astounds those of us who are used to a city’s ambient lighting. If not for the stars, this would be the deepest darkness I have ever known.
My mother used to tell me to read the Bible when I couldn’t sleep. While I wouldn’t mind reading a Bible now—for completely different reasons than the ones she had in mind—I doubt there is a copy to be found in the lodge, unless Deborah Simons has packed one in her luggage. The lodge library, composed exclusively of books left behind by previous tourists—is heavy on Stephen King, Dean Koontz, and Nora Roberts. Not a volume of Holy Writ to be found.
Nothing dull enough to lull me to sleep except my own journal, which serves at least to stand in the place of dreams. Here I can sort through the day’s events, record random thoughts, and—though I hate to admit it—record the progress of my deteriorating condition. If Life plays a winning hand before I hit my lucky streak, this journal may serve as the definitive record for another researcher.
Perhaps even my daughter.
Because if I am not successful, I do not doubt that she will be following my example, studying my journals, peering into every microscope until she finds the answer. If she does read this, I want her to know that I am allowing her to go with us into the jungle for only one reason—the simple need to cherish each remaining moment I have with her. When life has a foreseeable limit, every day becomes priceless.
One thought, oddly enough, comforts me. Dr. Michael Kenway, who dropped in on us yesterday, implied that he believed creation holds the answer to every disease on the planet—the almighty God apparently gave us the task of finding the cure and placing the proper key in the appropriate lock. In the same vein, Baklanov says that each bacterium requires a perfect match with the proper virus before it can be defeated. There are patterns in nature, designs I have not considered . . . but I find my mind opening to them now.
If there is a cure for encephalopathies in the jungle, I will either find it or go to my grave searching.
Perhaps the natives will speak of me—the skinny white woman who would not give up. Stranger things have happened. Who knows what odd things will happen when we enter the jungle? Already I feel we are operating in a world completely removed from everything I have ever known and trusted.
Alex paused, lifting her pen from the page. She could write more of her fears, but why dwell on thoughts that might one day terrify Caitlyn? Besides, fears had a way of turning into phobias and phobias into paranoia, all of which were symptoms of brain disease. She would have to guard her thoughts and not ramble only to pass the hours in which she should have been sleeping.
She closed her eyes, her fingers curling into a fist as she visualized the knotty little proteins that had amassed a microscopic army within her body. For years they had been accumulating, biding their time, waiting for her to enter the fullness of life—
I have never before thought that a microscopic protein could possess a moral value. Yet somehow I am convinced that just as Baklanov’s bacteriophages are good, prions are evil. My colleagues would scoff at such a notion, but their brains are not playing host to the little devils.
She hated this disease, hated all encephalopathies because they struck at the core of a person’s self. Take away a woman’s arm or leg or stomach, and you still had a functioning human being. Take away a woman’s mind, even a small but crucial part of her brain, and you had nothing.
Her mother, Geneva Pace, had been fifty-two when she developed the first symptoms of FFI. Alex and Caitlyn had been living with her at the time, so Geneva could care for the baby while Alex worked. She had experienced tremors, anxiety, and difficulty in falling asleep, but ignored these symptoms for months, chalking them up to the process of aging and the stress of caring for a young child.
Total insomnia, however, had been hard to ignore.
“It’s the oddest thing,” she’d said one morning at breakfast. “But I don’t think I slept at all last night. I turned on one of those old movies to lull myself to sleep, but my mind just wouldn’t turn off—I watched the entire movie, then two others.”
Alex had looked up in alarm, but her beautiful mother smiled and shrugged. “I’ll take a nap with Caitlyn this afternoon, dear, don’t worry.”
But she hadn’t napped that afternoon, nor had she slept more than half an hour the next night. Within two weeks, her pupils had shrunk to pinpoints and her blood pressure had risen to alarming levels. Alex had taken her mother to the doctor, who had prescribed medication for blood pressure and sleeping pills, but the pills had only made her mother lethargic. He had asked for a family history; Alex had replied that her grandmother died from Parkinson’s. Her death had been the reason Alex became a neurologist.
Undoubtedly, that diagnosis had been wrong.
For the next several months, Alex watched in horror as Geneva Pace withered to skin and bones. Her mother had never been a heavy woman, but every ounce of fat melted away as her body continually burned calories. She perspired constantly, which caused thirst and dehydration. Her attempts to sleep became desperate, and occasionally Alex would find her mother lying in bed, her mouth slack and her eyes wide. A light doze was the deepest sleep she could manage, no more than what other people would call a catnap. The sound of a footfall compressing the fibers of a carpet was enough to snap her back to wakefulness.
Geneva began to stumble and fall as her ability to balance slipped away. For a few weeks she could scrawl her thoughts on a notepad, but that ability disappeared as her motor skills deteriorated.
One of the last things she’d written for Alex was a warning: Find a way to stop this. For you. For Cait.
Alex had to put her mother in a nursing home, where the staff had a tendency to treat the sick woman as if she were unaware of her surroundings. She could not speak at the end, but her eyes told Alex she was cognizant of everything around her . . . and she was frightened.
Only in that last month did Geneva Pace enjoy anything resembling rest. After a long nightmare, she fell into a state of exhaustion that outwardly resembled a coma, though her EEG revealed a normal awake pattern.
Sitting by her mother’s bed, Alex stared at the frail body and the EEG and wondered if her mother was, in fact, awake and a prisoner within her own physical shell. What sort of exquisite torture it must be to hear, feel, and think without any way of communicating. Sort of like being buried alive, but instead of being locked up inside a coffin, you were entombed within your own dying body. . .
Alex was present when her mother drew her last breath. A moment later, the EEG spiked, then went flat as the neurons of her brain finally stopped firing.
Alex moved through the burial and funeral like a shell-shocked soldier, but when the paralysis of grief wore off, she returned to work and asked for permission to spearhead a new project. Leaving the wellpopulated field of Parkinson’s research, she began studying fatal familial insomnia and other prion diseases. When mad cow disease struck Britain in the last decade of the twentieth century, she realized that she had stumbled into the study of a disease as threatening as AIDS and as horrifying as Ebola. Agreeing with her vision, Kenneth Carlton of Horizon Biotherapies appointed Alex as head of the newly formed Neurological Research Department.
She had always heard that people found the death of a parent particularly sobering because it removed the so-called “buffer zone” between death and an individual . . . for Alex, her mother’s death removed any doubt that she had inherited a fatal disease. If her mother and grandmother had died from FFI, odds were great that she and Caitlyn would suffer from it, too. The disease was active in their bodies even now, quietly persuading healthy proteins to join its traitorous army.
How did this disease come to be rooted in my family? And how far back does the chain stretch? More important, why do 50 percent of children in a family escape diagnosis? Are they not carriers, or do they not live long enough for the disease to manifest itself? Perhaps it has something to do with gender—an infected father would not pass blood to his offspring through a placenta, and in that case, none of the children should inherit the disease. . .
I am tired, for I am making no sense. Perhaps I am completely off base. If stress is a major accelerator, is it possible that some infected individuals lead such blissful lives that prions never amass enough strength to do real damage? Sometimes I think I’d give anything to experience that kind of bliss, then I realize that sort of innocence must be unattainable for a thinking person in today’s world. . .
She lifted her pen as something rustled the leaves beyond the screen separating her from the rainforest. “Come in,” she taunted, keeping her voice low. “Anaconda, caiman, poisonous snake. Come in and kill me, if you dare. But don’t eat me, or you’ll spread prions throughout the jungle.”
She glanced up at the thatched roof as a random thought skittered through her mind—she should have told Dr. Kenway to soak his jungle man’s corpse in bleach. The devilish prions had proven themselves capable of withstanding thirty minutes of boiling water, two months of freezing temperatures, as well as disinfection with formaldehyde, carbolic acid, and chloroform. The malevolent entities had successfully passed through filters designed to stop the smallest viruses; they were tiny enough to remain in a suspended state even when spun in a centrifuge at 400,000 revolutions per minute. Prions remained viable in dried brains for at least two years; they resisted doses of ultraviolet light that routinely killed phage viruses.
The only agent that had managed to destroy prions was chlorine bleach. “Good old Clorox,” she murmured, capping her pen. “Wish we had a bottle with us.”
The corner of her mouth curled. Kenway believed God had hidden a cure for every disease somewhere on the planet? God would have proven himself far more practical if he had buried a few bottles of bleach in the jungle.
“Mom?”
From out of the darkness, Caitlyn’s voice startled her. “What is it, sweetheart? My flashlight keeping you awake?”
“Can’t you sleep?” A note of alarm trembled in the girl’s question, and Alex’s heart sank at the sound of it. Caitlyn didn’t remember anything about her grandmother’s death, but through the years she’d overheard stories about Geneva’s desperate insomnia.
Alex clenched her fist as her heart pumped fear and outrage through her veins. Life wasn’t fair.
“I’m fine, precious. Just writing a few things in my journal.” She reached for the flashlight and turned it off. “That better?”
The sound of silence hung in the darkness between them, followed by a sigh. “I can’t sleep if you can’t sleep, Mom.”
“Okay . . . so do you want to play the word game?”
“Sure. Can I choose the topic?”
“Go for it.”
Alex heard the rustle of sheets as Caitlyn turned. “Okay. Words that other kids say about you behind your back.”
An internal alarm rang in Alex’s brain. “Like what?”
“Like . . . geek.”
“Um . . . brilliant nonconformist?”
“They don’t say that, Mom.”
“But it’s a synonym. It’s just a matter of perspective.”
“Nerd.”
“Talented and unique personality.”
“You’re not playing by the rules.”
Alex hesitated, wondering how much she could say without interfering. Caitlyn managed beautifully in the field but seemed to struggle with her peers in Atlanta. On more than one occasion she had run into the house in tears after attempting to speak to the neighborhood kids.
The other preadolescent girls in their subdivision pulled their chemically streaked hair in taut ponytails, wore polo shirts and khaki slacks to private school, and spent their spare time watching MTV. Caitlyn, who usually wore the first thing she could pull from the laundry hamper, had hair the approximate size and texture of a tumbleweed and spent her spare time memorizing entries from Roget’s Thesaurus.
Geek. Nerd.
Sticks and stones could break your bones, but names hurt more than anything.
“Honey,” she began, “have the kids back home—”
“Let’s try another one: words you can say when you’re angry. Without cussing, of course.”
Alex looked away. So Caitlyn didn’t want to talk about it. Maybe out here, miles from home, she could almost forget the snotty little girls back in Atlanta.
She pretended shock. “Oh, my.”
“That’s kinda mild, Mom.”
“I wasn’t playing—I was responding to your suggestion.”
“Okay, so I’ll go first. Jiminy Cricket.”
Alex felt the corner of her mouth lift in a half-smile. “Rats.”
“Blast—Dr. Kenway says that one. I heard him saying it when he got out of the helicopter.”
Ignoring Cait’s reference to the doctor’s arrival, Alex pressed on. “Nuts.”
“Confound it.”
“Heck.”
“Shoot.”
“Dad-blamed, dad-burned, dad-gummit.”
Alex stared into the darkness. “Who says that?”
Caitlyn giggled. “Dr. Simons. She said it tonight, right after spilling her lemonade on Lazaro’s sleeve.”
Alex heaved a sigh. “Good night, honey. See you in the morning.”
“Aren’t we going to play any more?”
“You win. I’m too tired to think. And you need your rest.”
She heard the thump of Caitlyn’s slender frame on the boards supporting the narrow mattress, then . . . nothing.
Steeling her will, Alex lay down and stared into the blackness. “One,” she whispered, summoning up the image of a khaki-clad preadolescent tormenter leaping over her net-draped bed. “Two. . .”