The Comedown

  Now she was letting her mind drift from the conversation, thinking about the criteria for humanness—her philosophical training had taught her to think this way, which she resented. Surely people who wanted the rehabilitation of all criminals would be hard-pressed to defend a serial murderer and rapist? A child pornographer who repeatedly exploited infants? Or what about the matter of disability, the right to life? Was someone with multiple disabilities, with zero brain activity, still human? Should someone for whom light and sound were excruciatingly painful be made to live in the world? Someone so horribly depressed that death suggested itself as relief? And when did someone like this require defense over self-determination, and who was to decide? Maria was aware that she was a healthy seventeen-year-old pacing back and forth in front of a copse of New England trees, listening to Lee’s monologue on the phone. She was aware as well how fragile this state of being was for her: how she, too, had once been a near-death vegetable, how Lee was probably driving as he spoke to her and at risk of becoming a near-death vegetable himself.

  But oh God, she hated this way of thinking. She hated her fear of everything, her logician’s obsession with universality (or the Western simulacrum thereof). There was no metaphysics of morals. The right to die was a case-by-case-basis kind of thing, as was criminal rehabilitation. But then there was no metaphysics of the world, either: mathematical and scientific axioms meant nothing for billions of people living on the sides of mountains or dodging bullets or pedaling rickshaws, so why should they be the universal indicators of truth?

  She knew this much: she was Maria Timpano, she was alive, she was who she was because of a brain disease, not in spite of it.

  “Lee?” she said. She said it again and again until he’d finally stopped talking.

  “What?”

  “The temple’s name was Chaim Sheltok,” she said. “And if you’re gonna go, I wanna go with you.”

  1992–2008

  Ohio

  When Maria Timpano was born, rain was slapping loudly against the fiberglass windows of Case Western Reserve Hospital, loud enough that Amanda Timpano, who’d refused an epidural because she was against taking drugs if she could avoid them, had noticed it. Don Timpano was holding her hand, and he felt her squeeze his hand a little tighter. This began a pattern of squeezes where she alternated between very tight when the rain picked up and slightly slacker when there seemed to be a lull in the noise. There was a distant rumble of thunder and a flash of lightning, then both again, louder and brighter. Don registered people in the hallway talking about a possible Code Black. An RN himself, he knew that a Code Black meant severe weather, but this wasn’t information he was about to share with his wife. Amanda, her lower half grinding brutally against itself in an effort to dispel Maria, felt a hot, sweaty shock of cortisol burst out from the base of her head and wreak its sludgy havoc in her already messed-up body. She screamed in panic and pain, and Don tightened his grip on her hand. The sky outside their window was green.

  “You’re fine, Amanda,” an RN said behind her surgical mask. “Keep pushing and you’ll be okay.”

  The Code Black talk in the hallway got louder. The obstetrician hunched forward between Amanda’s spread legs, chin in hand, and announced that she was dilated about five centimeters.

  “Is there gonna be a Code Black here?” Don asked. Neither the RN nor the obstetrician responded, so he repeated the question.

  “Don’t worry, Don,” said the RN, Lucy, whom Don knew personally because they’d both gotten certified at Case Western two years ago, and whom Don resented a little because she’d proven herself far more gifted in the medical sciences than he was. “We’re not gonna call a Code Black tonight.”

  Amanda made a groaning, crying sound, her body taken to the absolute hilt of its physical capabilities. She’d been an athlete in high school—a gymnast well known for her flexibility and endurance—which had cultivated in her an extremely high threshold for pain. When she was eighteen, she’d torn her Achilles tendon while attempting a vault routine without stretching; the only way anyone had known she’d been hurt was by the grimace she’d made on her landing. She had been a thin, double-jointed girl with messy long hair and ovarian cysts, her periods heavy or nonexistent. When she did bleed, it was accompanied by the kind of pain that would make other girls blanch and run to the nurse’s office. At the advice of the family doctor, Amanda’s mother started her on a diet of protein shakes to help control her periods and build her strength. Now a twenty-nine-year-old woman, Amanda still drank High-Protein Pony Powder mixed with juice twice a day, and she was certain had she not done this, she would never have gotten pregnant with Maria. She’d worried about Maria’s conception more than she’d worried about labor and delivery, assuming her brutal puberty and short-lived gymnastic career had exposed her to every awkward and painful torment of the body, and that there remained no pain that wasn’t beyond her imagination. Now she knew she’d assumed wrong, because every nerve in her body had fried itself with the effort of feeling. With Maria’s every tug and slide, Amanda’s vision flickered a little. She screamed and then cried because her screaming sounded jagged and horrible to her.

  The obstetrician announced six centimeters, then seven. Amanda felt whatever progress she’d been making stop, the momentum now confined completely to her distended uterus and building up in a series of Maria’s frantic kicks.

  “It’s not working!” Amanda shouted.

  The obstetrician looked up at Amanda and Don, the look on his face one Don recognized well from nursing school: professional cluelessness. “You really can’t push?” he asked.

  “No, she can’t,” Lucy said. “It’s okay, Amanda.”

  A voice came over the PA announcing the Code Black. The sky was at this point spitting rain against the windows, and the thunderclaps sounded like God in a fistfight, which was what Don’s mother used to call thunder. Another RN came in the room, one Don didn’t know.

  “Code Black!” the new RN shouted at Lucy.

  “We’re in the middle of a delivery,” Lucy said.

  The obstetrician paged someone and gave that person quick, tense instructions. Lucy reached across Don to grab Amanda’s hand and tell her that everything was going to be fine, she just needed to hold on, hard as that sounded, and take some very deep breaths. The obstetrician walked up to Amanda’s left arm with what Don realized was a syringe.

  “What’re you giving her?” he asked.

  “Phenergan,” the obstetrician said, and injected Amanda, who shut her eyes, winced, and didn’t reopen them until Maria had been delivered via C-section.

  For the remainder of Maria’s life, the questions most frequently asked of her, Amanda, and Don would be about her early childhood: what she liked and disliked, how she expressed herself, whether any of them suspected then what they all knew now. Maria learned quickly that no single answer was satisfactory, that people preferred to hear her story and draw from it the conclusions that best fit their (emotional, spiritual, journalistic) needs.

  From the start, it looked as if Maria would be completely developmentally normal, if not slightly precocious. She spoke her first word at seven months, not “mama” or “dada” but “chair.” She skipped crawling altogether and began walking at thirteen months. She could speak in two-word sentences by twenty months and was speaking in five-word sentences by twenty-four months: in one video, Amanda holds her at the waist on their front lawn while Maria bounces up and down, shouting, “I like a red car!” Doctors told Amanda and Don to expect great things of Maria. They had on their hands a future straight-A student, a potential doctor or lawyer or veterinarian. Amanda took Maria on walks to the end of the block and back, pointing out trees, birds, and bikes and then showing her their corresponding versions in picture books. According to Amanda, Maria’s favorite thing to do at night was to sit in her crib surrounded by board and picture books and pretend to read them until she fell asleep. Sometimes she twirled a chunk of her hair around her right index finger
and fell asleep like that, her sectioned finger turning bright pink, then purple. Amanda grew to anticipate this, checking on Maria around nine o’clock and gently unwinding the hair from her finger.

  At around twenty-five months, Maria’s development plateaued and then began to regress. Amanda was reading What to Expect: 2–5 Years, which she’d checked out from the Shaker Heights library, and which told her that around this time Maria should be peppering her with questions about how things worked, like why the sun went up and down and why it only sometimes rained and how cars could go fast. But Maria seemed content to play with her plastic figurines—the only questions she asked were “Milk?” if she was hungry and “Bedtime now?” if she didn’t want to sleep. Her vocabulary had started dwindling, too. Whereas she’d once said “tree,” “book,” and “stairs,” she now said just “this” and pointed. She couldn’t talk about anything that wasn’t in her immediate vicinity. She fell asleep at the drop of a hat, nodding off in the car, in front of the television, in her crib long before lights-out. At first Amanda thought it was an extended cold or flu, but Don ruled that out with a basal thermometer and an ophthalmoscope from work. They took Maria to a pediatrician, who could find nothing wrong with her. On the car ride back from the pediatrician’s office, it seemed Maria had stopped talking altogether. Don kept on asking her if she was sleepy or sick or angry, and she said nothing. Amanda begged Maria to say something to them, and Maria just grunted wildly and looked at them, her face pained.

  They brought her to the Rainbow Babies and Children’s Hospital. She had lost the ability to walk, crawling like a child half her age, and instead of talking she made only a series of grunts and squeaks that didn’t sound human. She was admitted immediately, and brain scans revealed lesions covering 20 percent of her brain’s surface. If the lesions stopped growing right then, Maria would be permanently disabled. If they continued for any extended length of time, Maria would be dead.

  Was it true that both Don and Amanda thought of killing themselves and Maria during the awful week she was in Rainbow Babies and Children’s Hospital? The answer was yes, absolutely. Amanda fantasized about checking her floppy infant-toddler out of the pediatric ICU, buckling her into her car seat, and driving them both into the Cuyahoga River. Don imagined setting the house on fire after dosing his family with a lethal amount of potent sleep-aid. Don and Amanda didn’t share these fantasies with each other for obvious reasons. Instead, they took turns waking up from nightmares and sobbing into their pillows. The most common reassurance was “We’ll get through this,” which was, of all things that could possibly be said during what Don and Amanda would eventually describe as the worst month of their lives, the least realistic sounding.

  One day at the hospital, Maria had a series of seizures and stopped breathing. She was placed on a ventilator and remained in a coma for a week. At that point, her diagnosis was “neurodegenerative disorder.” No one had seen anything like it in the history of Rainbow Babies and Children’s Hospital. They planned to fly in a neurologist from Columbia University in New York, a Dr. Boza whose interest in the situation, everyone knew, was more scholarly than lifesaving.

  Meanwhile, Maria was dreaming in shapes of white and maroon. There was nothing about the days-long visual of these shapes that suggested meaning as human beings are commonly taught to think of it: no narrative and no opportunity to ascribe them a narrative, regardless of how abstruse such a narrative would be—the shapes never changed in size or color or dimension, never moved faster or slower across Maria’s injured brainscape. The only intelligible things about them were that they were the colors white and maroon, and that they were moving. The fact that these shapes existed confirmed for Maria that she was alive. They preserved her higher-order thought, frozen though she was by her hundreds of lightning-fast seizures and her breathing tube.

  When she arrived, Dr. Boza looked at Maria’s brain scans in a room full of interns, all of them awaiting her diagnosis. The scans revealed nothing to her, so she ordered another CAT scan and asked about Maria’s history, specifically her exposure to encephalitic diseases. She learned Maria had a clean bill of health prior to this hospitalization. But Maria’s karyogram revealed something Dr. Boza never thought she’d see in her lifetime: a chromosome-four deletion associated with Déphines’s disease. If this was, in fact, what was causing Maria’s illness, she would only be the fourth sufferer in the history of modern medicine. The disease—first detected in 1862 by a Belgian doctor called Rolande Déphines—was a condition of the brain suffered by children under the age of four, where developing brain tissue turned degenerative and cannibalized healthy tissue. Déphines’s two cases had been the landmark ones, and there had been another one in Israel in 1987. None had survived.

  Meanwhile, in the pediatric ICU, the two nurses tasked with staving off pressure ulcers shifted Maria’s small body ever so slightly, emptying the contents of her catheter bag. The maroon and white shapes moved across Maria’s inflamed brainscape as they had done for the past week. Then—and this would end up being Maria’s first conscious memory of her time alive—the shapes stopped, and her head opened and was flooded with light. There were noises that sounded like speaking and then noises that sounded like screaming but she couldn’t see much. Her vision was grainy and glazed, black and white, and then finally colors in meaning-signifying shapes. The first combination she saw was green and light brown and black: a nurse in green scrubs, her skin light brown and her hair black, her hands up over her head waving, shrieking. The sound of her shrieking something Maria could understand: “She woke up! She woke up!”

  “All of you seem really nice,” Maria began, addressing the circle of nurses and interns around her, “but I’ve been here long enough without being able to speak with my mom and dad—I think that’s long overdue, don’t you?”

  Breanna, the nurse who’d first seen her awaken, nodded in astonishment. “We’ve called them both.”

  The amazed reaction of the nurses and doctors startled Maria. She asked to see her file and another nurse handed her a clipboard, his hand trembling. Maria read: Maria Timpano, female, DOB: 5/8/92. She read that she was risk-negative for any number of heritable and lifestyle diseases. She read that she’d suffered several grand mal seizures and had been stabilized on a ventilator. Her diagnosis was Déphines’s disease.

  “What’s Déphines’s disease?” she asked.

  “We don’t think you have it anymore,” an intern said.

  “Then why am I here?” she asked. “I want to go home.”

  She tried to climb down off the bed but Breanna rushed over to her and picked her up. “You can’t leave the room yet, sweetie.”

  Behind Breanna, a few other nurses were telling her that they didn’t think she was allowed to pick Maria up. Maria squirmed in Breanna’s arms. “It seems like if I can walk, I should be able to walk on my own,” Maria said.

  When Amanda and Don first saw Maria up and walking around her room in the pediatric ICU, giving exploratory tugs to IV tubes and messing with the gauze in the lowest drawers, they at first didn’t believe this was their child. Maria was intelligent, it was true, but this child, this Maria clone, had the purposeful curiosity of an adult scientist. She was not yet three.

  “Mom!” she said. “Dad! Hi!”

  Dr. Boza was now obsessed. She wanted to know how this child had beaten certain death, and whether her genetic tenacity could be distilled, bottled, and administered to the numerous ventilator patients in ICUs across America. Maria was photographed in her bunny T-shirt and diaper only (toilet training was somehow not a part of her rapid development), standing against a whitewashed wall in the pediatric psych ward, smiling mischievously, hands behind her back. In the printed version of the case study, a black bar appears across her eyes to protect her identity. Don and Amanda were invited on Good Morning America and then The Oprah Winfrey Show—they accepted both invitations and consented to the use of footage of Maria completely destroying a Stanford-Binet administered
by Dr. Boza, scoring somewhere in the two-hundred-plus IQ range. Oprah particularly loved a clip of Maria’s response to an offering of green Jell-O in the hospital: “I think if everyone had to eat hospital food for six months, they’d understand exactly why I’m making the face I’m making.”

  Maria spent much of her early childhood in the pediatric psych ward. Sitting on the bed, kicking her legs and looking at the far-off ground, listening to RNs talking, Maria could feel time’s passage as the future slipping grain by grain into the past. The present was a thin, habitable sliver of things where they sat now. These slivers made all the difference, these sharp little knife’s edges. Maria balanced herself on them, listened to what happened around her, submitted herself to scans and X-rays and the chirping sound of Dr. Boza’s voice, knowing that whatever moment she was living in was only that moment for so long, until the future leaked in a little more, and then it was the past. This would happen, she knew, until the future had emptied itself out entirely.

  She was released from Rainbow Babies and Children’s in October 1996 to much fanfare from all peds staff. Dr. Boza wore a plastic tiara with pink stars attached by springs—she put it on Maria’s head, kissed her on the cheek, and said, “Thank you. Thank you so much.” By then the hospital could have been wallpapered twice-over with scans of Maria’s small body. Don and Amanda told every curious news outlet that their daughter was going to live a “normal life,” which was, because of all the media attention Maria’s case had now attracted, absolutely impossible. Weeks after her release, the family appeared on 60 Minutes, Maria with her black hair in red-ribboned pigtails and a plaid dress with red plastic apples as buttons. They all went out to dinner with Mike Wallace before filming, at a mahogany-toned place in Manhattan that served a lot of chargrilled red meat. Don ate heartily—Amanda, who was still a vegetarian at that point, ordered a house salad. Maria ate a plate of pasta with chicken Bolognese and answered Mike Wallace’s patient questions. He was smaller than he looked on TV, but his face was wide, awkwardly tan, and shiny. She could sense a very private sadness in him.