Arnav Moudgil
One in Four
“Take that tacky little thing out of your hair,” Marie said, slamming the driver side door. It was raining and they were late. Two shakes of the umbrella before tossing it on the passenger seat. One quick look in the vanity mirror. The makeup hadn’t smudged; it still clung to her faint wrinkles. Her hair was starting to frizz in the humidity but her hat would hide it. She turned the key, ignoring the clock-like chime of the “Check Engine” light. It had been on for a month. The car was fine.
“Anyone behind me, Addy?” Marie asked.
“Nope, you’re clear,” her daughter replied. As the car backed down the driveway,
Marie caught a glimpse of her eleven year-old. “Young lady, I told you to take that out.”
“But Aunt Lizzie gave it to me,” Addy said. “Don’t you think she’d want me to wear it?”
They were stopped at a light, and Marie was silent. “Handmade in Mumbai,” Lizzie had said. Christmas five years ago. “All the little girls had them in their hair.” Marie had never liked it: a large, gold-plated butterfly with fake diamonds studding its wings. It was something old ladies bought in souvenir shops.
“You know, you’d look cuter with your hair down.” The I-94 ramp was the next turn.
As Marie started to take it, a car swerved in front of her. She braked, punched the horn, but the offending car disappeared.
“Are you okay?” she asked Addy.
“Yeah, I’m fine,” Addy said, leaning sideways. “What happened, what did you do?”
“It wasn’t my fault,” Marie responded, inching forward. “Some jerk cut me off.”
“Oh, okay.” After a few seconds, Addy said, “I like the way it looks, I’m keeping it.”
“Fine.” Marie was tired, tired of working to put together this funeral. She hadn’t
been sleeping well. Only a handful of homes did cremation, and they charged extra. Would there be an open casket? What clothes would she be bringing? It didn’t matter to Marie, her sister would be ash soon. But she picked what Lizzie would’ve liked: a sheer white Tshirt from India, with a thread-count so low it looked like gauze, and a blue floral skirt with rubber sandals. If Lizzie had a parasol, she could have been at the beach.
When they were young and the rain would knock the power out, Lizzie would say, “Let’s go outside!” She would slip Marie’s arms into the sleeves of a pink raincoat and her feet into checkered galoshes. Sharing the shelter of a transparent umbrella, the pair would traipse through the yard, Lizzie turning over rocks, Marie tripping over them.
“Are you okay?” Lizzie would ask, seeing Marie’s bloody knees.
“I’m okay,” Marie would reply, “I’m really tough.”
“Good. Close your eyes and stick out your hand.” Marie did, then felt a drop, like a fleck of dirt. It was moving.
“Ew!” Marie said, opening her eyes to find a pillbug walking across her palm. She wanted to wipe it off but Lizzie held her wrist. “No, look, it’s a roly poly bug. See?” Lizzie tapped it and it curled up into a perfect ball, still, harmless. It unraveled after a few seconds. “That’s so cool!” Marie said, grinning up at her sister. They were twelve and five, a pair of homespun explorers. “Let’s go find other cool things,” Lizzie would say. When they came back inside, their heads would be jeweled with drizzle.
“Let’s do some math, sweetie,” Marie said.
“Do we have to?” said Addy, busy reading billboards.
“You don’t want to fall behind in class. Tell me, what’s reciprocal of the square root of sixteen?”
Addy thought about it for a few seconds. “One fourth,” she finally said.
“Yes.”
They were ten minutes late, but no one was at the reception yet. Rows of plastic chairs sat in a corner of the foyer, facing Lizzie’s open casket. She had opted for this instead of a private room because the foyer had a tile floor, and the ceremony needed a small fire. The casket was just beyond this space, with only the top half propped open.
Lizzie lay there looking asleep at last. Near the end she had total insomnia. Sometimes she acted out her dreams. Marie once walked in to find her sister lying down, eyes closed, trying to brush her hair, her hands waving tremulously as if she were in a trance. Marie panicked: her sister’s body was acting of its own accord. She shook Lizzie’s shoulder, harder when her sister didn’t wake.
“Lizzie, wake up!” Marie had said.
“What, I am awake!” Lizzie had answered. She couldn’t maintain her pulse or her blood pressure, but she always thought she was awake.
Lizzie had lost so much weight, her skin had sagged and stretched, almost translucent. The mortician tried to cover up the gauntness and the mottling, but it couldn’t fool Marie. Even with all the makeup, fifty-two never looked so old. Lizzie wouldn’t have wanted to be seen like this.
Silver trays, wrapped in aluminum foil and full of samosas and garbanzo beans, lined the adjacent wall. Marie’s stomach roared, unexpectedly, as she walked towards the aromatic snack table. She had never taken strongly to ethnic cuisines, but it was one of the few requests Lizzie had made while she was still lucid.
“I don’t want to be buried away,” Lizzie had said, glistening. Her breathing was shallow; words were tossed together between gasps.
Dr. Singh came first, followed by a bearded man wrapped in a pale orange sheet.
“Sorry we’re late,” Dr. Singh began, but Marie cut him off.
“It’s okay, we were too.”
“This is the pandit, Pandit Mukherjee,” he said, motioning to the man behind him. “He will be performing the ceremony.”
Marie looked him over: three stripes of sandalwood paste on his forehead, a beaded necklace held loosely in his right hand. He folded his palms together and bowed. Unsure what to do, Marie mirrored him.
“Please, feel free to set up,” she told them, indicating the space between the casket and the chairs. “Everyone will be here shortly.”
They trickled in: friends of the family, old teachers, international acquaintances. “I’m so sorry for your loss,” Mrs. Pratt said. Her husband was the vicar of the Anglican Church Lizzie and Marie went to as kids. Lizzie hadn’t gone in nearly thirty years. She spent that time instead traveling the world, making friends on every continent. They were easy to pick out, the ones who smiled awkwardly, exchanging generic pleasantries. One of them was Greek, another from Kenya, some South Americans who could hardly put together a complete English sentence. But if there was one country Lizzie always returned to, an adopted homeland, it was India. She felt there was always something new to discover there. Her work was never done.
Lizzie had been a global nomad since she received her diagnosis twenty-five years ago. Her time abroad was measurable in decades. She usually returned twice a year, for Christmas and Addy’s birthday. In Addy’s room was a pushpin-studded map of the world, one pin in every country Addy got a postcard from.
Some people tell others to live every day as if it were their last. Lizzie actually did.
“Ms. Cheslow, how nice of you to come!” Marie saw an eighty-five year old woman heading towards her, clutching an aluminum walker.
“Hello Marie,” she said. “I’m so sorry.”
“Thank you. I’m glad you could make it. Please, take a seat.” The pair sat down in the back row. “Are you okay? Can I get you anything?”
“I’m fine, Marie. This must be Addy,” she said. Addy said “Hi,” then Marie added,
“Sweetie, why don’t you get us some snacks?” Her daughter left.
“How are you? This must be so difficult.” Ms. Cheslow said. She used to live down the street, babysitting the little girls. Cookies, candy, TV: she coddled them like the children she never had. Even after Lizzie had gone off to college and Marie was old enough to take care of herself, Ms. Cheslow still called to see if Beth needed any help. Then one day she moved a few counties over to take care of her parents, and, after their death, never came back.
“I’m holding up,” Marie said.
“Good. Remember to take care of yourself.” Age hadn’t dulled her mothering instincts. “I loved the stories she used to tell. Remember the stories? The one about Egypt?”
“They were wonderful.” Marie said, smiling.
“I always wanted to visit Egypt,” Ms. Cheslow gazed around the room. “Honey, I hope you don’t mind me asking. What did she die of?”
Marie hesitated, a lump forming in her throat. It hadn’t become any easier to answer.
“It’s called familial fatal insomnia. She basically lost the ability to sleep.”
“How strange.”
“It runs in the family. There was nothing we could do.”
“At Beth’s funeral they said she had a stroke.” Ms. Cheslow was now staring at the casket. “Was that the same thing?”
“No, our father had it.”
“I remember that. You couldn’t have been two. He had dementia. Couldn’t tell us what month it was.”
“We didn’t know about this condition back then. Lizzie was the one who heard
about it and put it all together.”
“Is that why she dropped out of medical school?” Ms. Cheslow looked at Marie, who was staring at the floor. She put a hand on Marie’s shoulder. “Did she suffer long?”
Physically, the final few were the worst. She couldn’t sleep, couldn’t swallow soft foods, and remained mute for days on end. In the hours of clarity she had, she was too weak to talk or write. She lay in her sweat-soaked hospital bed waiting for relief. The first sign–a sleeplessness she couldn’t shake–had come almost a year ago. Mentally, she had been waiting twenty-five years for this moment–half her life she had suffered. One lecture on prion diseases grew to several nights in the school library, pulling down book after book on neurological disorders.
Lizzie wanted to know exactly how her father died. Beth tried to resist at first, denying anything had been wrong with her husband’s brain. But Lizzie’s accurate descriptions could not be ignored.
For months Lizzie wrestled with her suspicions, unable to focus on anything else. If her father had it, she had a fifty percent chance of having it too. She had to get her DNA tested; she had to know, there and then, whether or not her life would end the same way. A few weeks later the geneticist showed her the test results, and her life swerved. For half her life, she had suffered knowing this
“Are you sure you’re fine, dear?” Ms. Cheslow asked.
“I’ve got it together, Ms. Cheslow, don’t worry. This day is about Lizzie.”
“No, I mean,” she paused, “if it runs in the family, are you going to get it too?”
That was the question. Everyone had asked it, and those that knew more, like
Lizzie’s doctor, wanted her to know the answer as well. Just like Lizzie, Marie too had a fifty percent chance of developing familial fatal insomnia.
“You have to get tested,” Lizzie had once said, having dropped by unannounced.
Her appointment was set for that afternoon. “Come on, we’re going.”
Marie was barely eighteen and she hadn’t seen her sister in months. Lizzie still looked the same: pink streaks in her hair, flare cut jeans, a sandy canvas jacket. Part hippie, part cowgirl, she was roping Marie along.
“I don’t think so. You can’t just barge in here and tell me what to do.”
“I’m not messing around, Marie. We’re talking about our lives here.” Lizzie had said.
“I can’t deal with all this now. I’ve got homework and exams and all of a sudden you’re saying we could both have some horrible disease? ”
“You don’t believe me?”
“I don’t know.” Lizzie stopped leaning against the doorway. The car keys jingled in her hand, and a humid May breeze brushed the back of her neck. Marie continued to fill in calculus worksheets.
“We need to know.” Lizzie had finally said. “I need to know. It’s for the best.”
“Dammit, Lizzie!” Marie turned back to face her sister. “Not everything you do is ‘for the best.’ You haven’t seen what Mom’s been like the past few months. I go to school and sometimes she’ll still be in bed. I’ll come home and she’ll be washing the same dish over and over again. She’s the one who needs help, not you.”
“She’ll be fine, we’ll get her to talk to someone. But right now we need to take care of ourselves.”
“That’s so typical. Keep thinking about yourself.” Marie had always been both awed and frightened by her sister’s limitless curiosity, but now it was gnawing at her patience. “Go ahead and find out if you want, but leave me out of it. I’m fine with the way things are.”
“Are you sure?” Marie had turned back to her work. When no reply came, Lizzie said, “Okay,” and went downstairs. Soon, the garage door creaked open.
Marie still hadn’t been tested. She was glad to be in charge of the funeral preparations, if only for the distractions they provided. Dr. Singh had given her the names of several genetic counselors; the list lay untouched on her desk. Only Marie knew the reason for so much procrastination: Addy, now leaning over the snack table, grabbing for napkins. The child for whom she had spent thousands in fertility treatments would not be able to stay just a child if Marie’s test was positive.
If Marie had it, then Addy would have to be tested, and even if Addy didn’t have it, how could Marie continue to take care of her? The disease could be right around the corner. It might strike next year, it might wait a decade. Eventually it would peel away layers of sanity and bodily function until her cells simply gave up. There was nothing to stop it or slow it, no place to hide from it. Once she knew, her clock would begin.
Addy came back with the food, but neither woman was hungry.
*
Marie and Addy sat on the tile floor next to Dr. Singh, all three facing the small fire. The pandit launched into Sanskrit verse. At first the noise lashed against Marie’s ear, violent, nebulous, tumbling between trills. When the pandit pointed, Marie added a spoonful of clarified butter or a handful of puffed rice to the fire. Soon the air was stifling with melting fat. It almost hurt to breathe. Everything looked old: the fraying cloth, the scuffed brass pots, the slipshod earthen oil lamps, even the spoon Marie held, worn smooth over the ages. It was from a simpler time. People died, they honored it, and life marched on.
Marie wanted a staid church service, like the one she’d had for their mother. It should have been in a language everyone could understand. Now, caught in the pandit’s subliminal lilts, Marie found herself a stranger at the funeral service she had planned herself. It was Lizzie’s fault. She had spent the better part of her adult life collecting adventures. How could Marie compete? Stories about piano recitals became flat soda to Lizzie’s champagne. The days of doing everything together disappeared when Lizzie did.
Marie wasn’t going to let the disease define her. She had married right out of college, to a young commercial airline pilot. She would get to see the world too, she thought, just on her own terms. And for a while she did: Christmas in Vienna, summer in the Alps. But as the marriage grew older they were taking fewer vacations. The airline industry downsized and Marie couldn’t conceive. Jack’s extra routes paid for the fertility treatments; one after another they all failed. The positive thinking that the doctors first prescribed had been spent.
It was after the divorce that Marie began reconnecting with her sister. Lizzie was the one who suggested going to a sperm donor, trying one last time. Perhaps it was remorse over having lost touch with her sister that Marie allowed herself to give it a try. When it worked and Marie became pregnant, Lizzie was the first to know.
Throughout the past eleven years, Marie hadn’t helped but feel a certain pride that motherhood was one happiness Lizzie knew nothing about. And yet, after watching Lizzie’s progression in this last year, there occasionally arose in her mind the thought, uninvited, that if she did carry the lethal gene, the last thing she should have done was pass it on to the next generation. That’s when she would lie down next to her sleeping daughter and wrap her arms around Addy, willing her tears to stop.
The ceremony ended as abruptly as it had started. Addy nudged Marie’s knee; the fire was dying and everyone was staring at her expectantly. Dr. Singh stood up first and went to a box next to the casket. He took a handful of marigolds, pressed them to his forehead, then sprinkled them over Lizzie. The rest of the audience followed suit, some stopping to say a few words, others tucking the flowers into the casket’s crevices. Marie and Addy were last, and the tart, acrid scent was overwhelming. Marie had nothing to say. She had watched her sister enjoy the last half of her life before coming home to die. Somewhere within her sister’s skull lay the diseased brain, riddled with holes. Under a microscope it looked like a pink, useless sponge. Marie felt a chill. She strewed the vermilion flowers in Lizzie’s blonde hair and moved on.
Dr. Singh came over to close the casket. With the help of a few volunteers, he and Marie lifted the leaden weight. They trudged to the crematorium, a warm cement chamber redolent of bleach and ash. In the center was the steel cremator. The oven door was already pulled open, revealing a glowing orange maw. They hoisted the casket up a few inches and slid it into the oven. The funeral director pulled the door up, sealing the chamber with an echoing metallic snap. Marie stayed behind as the rest of the procession filed out, rubbing her hands together, trying to revive them. The crematorium’s warmth had no effect on her. She forced herself to picture her sister’s face, soon to be incinerated, cradled in the bosom of that furnace.
Many began to leave, while those that stayed picked at the leftovers. In a few days she would collect the ashes, then in a month go to India with Dr. Singh to scatter them in the Ganges. A year’s suffering had come to an end; she took a deep breath. Dr. Singh walked over to Marie, but she spoke first.
“Thank you, for everything. I can’t tell you how much it meant to Lizzie to have you as her doctor.”
“I should be thankful too. She never hesitated to criticize me. You don’t forget a patient like her, never.” He bit into a samosa and scanned what was left of the mourners. There, just below the corner of his lip, Marie noticed a smear of green chutney on his white beard. Laughing, she handed him a napkin, and Marie felt hollow. Lizzie’s saga was over and she dreaded what should come next. This intermission was her numb vacation. She wished it could draw out forever.
“I know I’m being blunt, but have you given any more thought to having yourself tested?”
“It’s still too soon.”
“Please call if you have any questions. Twenty-five percent is a very serious risk.” Twenty-five percent: that was the number he pinned to Addy’s chance of having familial fatal insomnia without knowing if Marie had it or not. If Marie knew, that number would either go up to fifty percent, or disappear to zero. That’s all they saw her daughter as, a series of calculations to predict whether or not a misfolded protein would shred her brain’s ability to control her body. She was tired of it. Her daughter was not a failure of evolution.
She went to the door and stood just inside the threshold. The sky was clearing. The crisp air flushed her lungs of the stale funeral home atmosphere. It filled her emptiness. Addy walked up behind them and headed across the street to an open field. Marie watched her climb up a small ridge and come to the base of a lonely honey locust. Addy looked up into its branches. They hadn’t spoken much about the death. There were no more tears; they dried up when Lizzie was at her worst, and all Marie wanted was the relief her sister deserved. There were no more questions; Addy had been told what she needed to know. Her aunt was sick. Nothing could be done.
Dr. Singh came up next to Marie, still eating. They watched Addy throw one arm around the lowest branch and hoist herself up. The butterfly ornament, still resting on Addy’s head, was glinting in the sun, tracking her every move.
“Be careful!” Marie called.
“I will!” Addy yelled back.
“She’ll be fine,” Dr. Singh added. “Kids are so resilient. She’s pretty tough.” But Marie didn’t hear him. Instead, she watched her daughter disappear into the canopy, a glass marble waiting to drop.