Excerpts

Chapter One chapter one CHRYSE BORGHES 1237 La Lacedemonie The moment one shared life explodes into two, both lives hang in the balance. Chryse had already lost two children and despaired that a living being would ever enter the world from her perilous body. She feared every kick beneath her ribs would be the last, and that she would look again into the dull eyes of a life snuffed out before its time. She awoke in the night with a gush that drenched her bedclothes, then a searing pain that made her feel as if she might tear in two. She had no time to send for the midwife, but she was a midwife herself, and she knew this child was coming early. Her husband, Jéhan, had marched with his regiment the day before and was encamped far from home. Tonight she was alone, crouching on the dirt floor while a rainstorm raged and wind wailed through the gaps in the wooden shutters. After a minute's pause, the pain began again. Had there been a messenger to send, she could have found help in one of the other houses surrounding the residence of the Frankish prince Villehardouin, who ruled the valley and the land beyond. But there was no messenger. In the end, it was not her experience that guided her when the time came; the knowledge came from the labyrinth of childbirth. At dawn, the pains came hard and fast with no time to breathe between, and then he was there, first head, then body, all four limbs-- blessed Theotokos, mother of God . A boy with the sea-gray eyes of a newborn. As she lifted the slippery child into her arms, he took his labored first breath. His lips were dusky blue; he fought the air like an enemy. Not this one, too, please no. Chryse cut the baby's cord with the scissors she had used for others' births. Did she imagine the resistance in that twist of vessels, the reluctance to sever the last physical connection between herself and this delicate life? Around her neck the mother's amulet of protection swung forward, etched with the she-demon Abyzou being stabbed by a holy rider's sword. You will not have him, Abyzou. This one is mine. She rubbed her son roughly with a cloth until he squirmed and wailed. She had not had time to draw water from the well or to warm it on the fire to mix with salt. Chryse swaddled her son and put him to her breast. He struggled between sucks, pulling away while his little chest heaved with effort. Chryse had seen tragedy come to lives that started just like this one. She closed her eyes. Profitis Ilias, who looks upon new mothers and babes with compassion, hear this prayer. Breathe air into his lungs... The wind gusted, clattering the bare branches of the olive tree outside. Profitis Ilias, answer me, and I will promise you whatever you ask. The wind stopped as suddenly as it had come, and into the silence a voice spoke in Chryse's head. Bring him to me now . Chryse wrapped her son in a wool blanket and bound him against her chest; his heart beat fast against her own. She pulled her cloak around them both and closed the door behind her. At first the road was flat, winding through the valley's bare-limbed orange trees, but soon it began to climb. Myzithras, it was called, this solitary peak rising starkly out of the valley, silhouetted against the snowcapped Taygetos mountains behind. It was just daylight, and goats' bells echoed in the morning air. Mud made the way treacherous, and the boulders were slippery with moss. Once, Chryse lost her footing, and she wrapped her arms around the bundle on her chest, rather than putting her hands out to break her fall. With that instinct, she realized she had become a mother. Chryse's knee hit rock, and the pain made her eyes tear, but then she was up again, her robe muddy and her knee burning. Farther up, the trees thinned and the wind blew fiercely with nothing to block it but scrub and scattered gray-brown rocks. As Chryse neared the peak, the sun cleared the ring of mountains surrounding the valley. Finally she reached the tiny shrine of Profitis Ilias, its white stone bright in the sun. Chryse ducked inside the low doorway. It was quiet in the shrine, the wind blocked by the thick walls, but the silence was receptive, an ear into which prayers might be spoken and heard. She unwrapped her son from her chest. His eyes were closed, and for a moment her heart stopped. But there it was, a lift of his shoulders, his next breath. She straightened her arms to raise the baby above her head. "I have brought him to you," Chryse said. She waited until her arms ached. When the answer came, she could not tell whether the voice was in her head or in the air. In the years that come, a city will grow upon this hill, where my shrine now stands. The city will flourish as the heart and soul of this land and its people. You shall name your son after me, and he shall be mine. He will serve the city that grows upon the hill for all its days, and in return I shall breathe air into his lungs. But heed me: for when I call him he must come, and his lives will be in my service. "I heed you, Profitis Ilias, and my son heeds you also," Chryse said. A wind rose again: first a hum, then a rush, and finally a keening wail, and at the sound's peak her son took the first strong breath of his life. His face flushed and his eyes opened to fix upon her face. As Chryse made her way down the steep path back to the house, she heard an echo: For when I call him he must come, and his lives will be in my service. Chryse's son felt suddenly heavy with the weight of that word: lives. HELEN ADLER January 2015 New York It's a weighty name, Helen. I'm not Greek, or Spartan for that matter, which would be more accurate. No one is really Spartan anymore, not since Menelaus had the bad luck of marrying the most beautiful woman in the world. My mother, who was a New York Jewish girl, was reading the Iliad when she was pregnant with me and got inspired. My face is fine, but no wars have resulted from it. I consider this a good thing. Names are the least of what we load on our kids' little backs, inadvertently or otherwise. "Parenting is not for sissies," my mom used to say. I would like to tell her, now that I am a parent, too, how right she was. I was reading Mary Renault's Fire from Heaven when I found out I was pregnant, which partially explains my son's ending up with the name Alexander. I say partially because I'd always loved the name, but having Alexander the Great on the brain when a baby was beginning life in my belly hammered the decision home. Alexander seems to be handling his name fine so far, but there is an opacity about kids. You never quite know what they're thinking, even when they tell you, which they usually don't. Alexander is particularly opaque, especially about what's bothering him. Until he blows. But, fortunately, that doesn't happen very often. He reminds me of his dad, Oliver--the way he thinks before talking, as if he is gravely considering the consequences. Oliver almost never got mad either, and I don't like to remember the few times he did--especially now. I am always looking for things that remind me of the best of Oliver, now that memories are all that's left. Alexander is a natural place to find them. I try not to look too hard. My kid is himself, he's not a window into someone else. Almost a year later, I wonder whether my memories of Oliver are accurate. Was he actually perfect or do I just remember him as perfect? I suppose there is an advantage to dying suddenly. No one has time to think of you as sick, or failing, or needy. No one gets tired of your whining, no one has to watch you fade in the months before the end. Butterflies, I read once, die by just drifting to the ground, beautiful to the last second. Poetic, but it doesn't help me much at the moment. I am not at the point of appreciating anything positive about Oliver's death, though some well-meaning acquaintances say at least he didn't suffer long. I don't know how long it takes to drown, nor whether drowning for a minute is worse than dying slowly, like my dad from Parkinson's disease. So I can't console myself with that, either. It is not a coincidence that I have devoted my life to studying the science of neurodegenerative diseases, while I watch my father gradually slow down to a nearly motionless state, except on those terrible moments when he falls and can't stop himself from hitting the ground. He went from playing tennis to playing checkers, from living alone to living with help, and finally, reluctantly, from his apartment to a nursing home. Our paths were linked: nursing home for him, neurodegenerative disease lab for me. My last few months with Oliver were ordinary. Oliver and I ignored one another healthily, the way normal parents do once the child eclipse hits. I was writing a proposal for a National Institutes of Health grant, while trying to imagine how we'd host Thanksgiving dinner for my extended family in our six-hundred-square-foot Manhattan apartment. Oliver was preparing for a foster child's adoption case that kept him talking long after we'd turned the lights out. In the meantime, we were preoccupied with ordinary things: complaints from the downstairs neighbor about my walking barefoot to the bathroom in the night, and Alexander's troubles with writing in second grade. Oliver coaxed Alexander through p 's and q 's and b 's and d 's, more patient than I ever could be. At night, we had moments together, if not necessarily at leisure. "How's my sweet cellular biologist?" he'd say. Oliver was the only person I've ever met who used the words sweet and cellular biologist in the same sentence. The week before he died, Oliver came home after Alexander's bedtime to find me staring at a screen filled with incorrectly formatted tables. "Bad at Excel," I said grimly. He kissed the back of my neck. "How about some help?" he said. Oliver's competence with Excel was legendary. He sat down next to me. I watched, letting relief wash over me. A few months later I was on my own--with Alexander and Excel. The first Monday in February blossomed into an epic childcare fail. The afterschool program I'd relied on to amuse Alexander until I could exit work--as usual, running, leaving multiple unfinished tasks in piles on my desk--had been shut down by a stomach bug. This meant Alexander, now a restless fourth grader who would have already spent seven hours that day sitting as still as possible in an overheated public school classroom, had to join me for a critically important, endless afternoon meeting with potential donors, a meeting that my lab's survival hinged upon. My research is, for want of a better word, basic. This means that I study things that nonscientific people would find incomprehensible or downright dull. Most of the time, I work with cells growing in a dish. The implications of what I do are big, but the cells are tiny, and my job is tough to explain. "So, how does it help people exactly, this, er, science you are doing?" my aunt Delia asked while filling her mouth with a roast beef canapé at our wedding. That was neither the first time I'd heard that exact sentence, nor the last. Despite all that, the actual experience of growing nerve cells is mesmerizingly beautiful: the elegant pattern of their delicate projections silhouetted like tree branches in winter, the gray-white grainy electron microscope images of mitochondria, the cells' powerhouses, with their curious internal folds, hinting at mystery. On the way to Alexander's school, I plotted the best approach to avoid a work/life disaster. I could give him a device with a screen and headphones, then put him in a corner. There was also bribery--the $49 Pokémon box he'd been begging for. I was still scheming when I picked him up at Door "C," the eloquently named exit to the asphalt play yard behind his public school. Alexander looked poignantly alone, his head turning while he searched for me. His backpack seemed impossibly big on his hunched shoulders. In that moment he looked, fleetingly, like Oliver on our first deliberate date, a boat tour of the Hudson River. I'd seen Oliver first that day too, searching the crowds for me. That was the moment I'd fallen in love, when his face was filled with anticipation, the first stirrings of what would become our future. I barely remember the boat ride, but I remember Oliver--his light hair rising in the wind as we pulled out, the way he kept his eyes on my face, his generous laughter every time I tried to be funny. And I remember the two muffins that he'd brought for our breakfast, along with one coffee and one tea, just in case. We'd shared the coffee. My voice broke when I called Alexander's name, my throat tight with remembering. Then Alexander's eyes caught mine and he was rushing past his harried-looking teacher and into my arms. He smelled of tuna fish and Elmer's glue. I bought him a pretzel that was as big as his face. Not exactly bribery, but I hoped it might help, and while he bit through the salt-dusted dough, I started to explain. "So, Alexander, I have a meeting today, and since day care is closed, you'll have to come with me." I forced myself to pause and listen--something Oliver had tried to teach me. He used to say that I'd give Alexander something to worry about when he hadn't been worried to begin with. Alexander went back to the pretzel, which he'd pulled apart. He took a bite from the right half, then the left half, then the right again. "I like to keep it even." "It's a long meeting. I won't be able to talk to you. There will be a lot of grown-ups you don't know. There will be a lot of grown-ups I don't know." "Why are you having a meeting with a lot of grown-ups you don't know?" "To tell them about my science and convince them that they should give me money for experiments." We were close to the subway station now, standing in front of the store with the best Pokémon cards. I stopped, wondering whether to introduce a bribe. "What science?" He'd asked me before, but there was something different about the way he asked now. The words I'd been planning for the funding meeting popped up first. I culture rodent neural stem cells for experimental striatal transplantation into a mouse model of Huntington's disease. Mom brain and science brain faced off inside my head. "Uh... I take immature brain cells, baby cells that haven't turned into brain cells yet." "Where do you get the cells?" "From mice." "How do you get them out of the mice?" We were heading into dangerous territory, but it was too late. "I take them from mouse brains." "You cut their heads open?" "After they are put to sleep." "And what happens when they wake up?" "Ah... they don't." Alexander looked down at his sneakers. I looked down, too. The soles were shredding off, and he'd broken both shoelaces. I moved my gaze to Alexander's sweatpants, which were three inches too short. "You have to kill them?" "I don't want to hurt the mice. They help me make sick people better." Alexander brought the two pretzel halves together and tried to get the edges to match, which, of course, they no longer did. "I'm not hungry anymore," he said, handing me the pieces, which were slightly damp where he'd bitten them. I wasn't hungry either. After the mouse conversation, I thought we were done talking about my science. It turned out, after I'd stocked Alexander with three packs of Pokémon cards, several of which he declared "super-rare," that we weren't. "What problem are you trying to fix with the baby mice?" Alexander asked as our train stopped at a signal in the subway tunnel. "I told you I study Huntington's disease, right?" Alexander nodded. "The rare brain sickness?" "Right. It makes people lose their memory and have movements they can't control." "Can I get it?" He looked worried. "No, it gets passed on from one generation to the next, from parents to their children." "In the blood?" "Not exactly the blood. Huntington's comes from a problem with the genes, the DNA, the messages in cells that tell them how to grow. Almost all cells have DNA in them." Alexander looked only slightly less worried. "So I could get it from you?" "Sweetie, no! Not at all. I don't have it." "And you can't get it?" "No--you can only get it if you're born with the gene." He puffed out his cheeks with relief. "The kid gets it just like the mom or dad?" "About half of the time," I said, translating autosomal dominant inheritance. "Often it gets worse from one generation to the next." "Why?" "Because the gene has too many copies of three chemicals in a row, called 'triple repeats,' and when the new cells of the new person are made, the copies multiply. The more copies, the worse things get, and the earlier the problem starts. That doesn't always happen, but it can." "That sounds scary." "It is," I said, ruffling his hair. My little scientist. "The worsening from one generation to the next is called 'anticipation.' That's one of the things I'm studying, so that maybe we can stop it from happening." "I thought anticipation meant getting excited." "Right, usually. In this case, it means that Huntington's disease in some families comes earlier and earlier, from the grandparent, to the child, to the grandchild. It's a different kind of anticipation." He sighed again, wrinkling his forehead. I wanted to smooth out the worry with my hand, but that wouldn't touch what was troubling him. "Are you still worried?" "No." "It's good to talk about this with you," I said, risking directness. "Even though it's kind of upsetting, I'm glad you're interested." "Of course I'm interested." Alexander shuffled through the cards in his lap. "This one is Hoopa," he said, pointing to fine print I could barely read. At thirty-nine, I dreaded reading glasses. I'd promised myself never to wear them on a beaded chain around my neck. Alexander had no problem reading the card. "He can summon these rings, and if you go through them, you get transported to another dimension. Hey, can I have my pretzel?" The Pokémon cards worked for a while, getting Alexander through the dullest part of my meeting. The visitors today were identical twins, sisters in their midthirties named Alicia and Alina, patient-advocates who volunteered to tell their stories about life with Huntington's. They wore matching outfits: green turtlenecks and black pants, black sneakers with bright white treads. One sister had long red hair, loose and fuzzy about her face, the other had the same startling shade of red, but cut short in tight curls. Entering the room in tandem, they mirrored one another--as if one sister's twisting head, the dance-like jerks of her arms, were an invisible force reflected by her twin. As one head tilted, the other did, too, and their paired movements had an eerie, rhythmic beauty. Although they were courageous and inspiring, speaking eloquently about their fight to maintain as normal lives as possible, they knew they would worsen, in awful simultaneity. They'd seen their father losing first his balance to the involuntary movements of chorea, then his mind, then his life, several years before their own symptoms began. They tried to hold on to the knowledge that every individual with Huntington's disease has a different body, mind, and heart. They told stories of family members who tested negative and were consumed with survivor's guilt. They recounted their agonizing decisions about whether to get pregnant, and about their mother, who, in her darkest moments of despair, had regretted having had children at all. After everyone left, Alexander gathered his cards and stuffed them in his backpack. "You said the bad protein, the one that gets made by the bad gene--doesn't fold right?" I smiled. "Yes, kind of like how you fold laundry. But with laundry, folding badly is better than not folding at all." I saw he'd been gripping the Hoopa card tightly in his hand, so tightly he'd bent it. He sighed, opening his hand up and flattening the rectangle of flimsy cardboard. "It's okay about the mice, Mama," he said finally. "You have to stop the chorea." He put his hand in mine and we stood up together. "And I'll work harder on folding the laundry." We walked back to the station to catch our train home. EUDOXIA She awoke from a dream in the dark. Once, she would have opened her eyes to see her narrow bed, the thin coverlet of threadbare wool, the earthen floor of the cave tucked into the mountain. Now she was blind--she could stare at the brightest sun without flinching. But her inner eye had sharpened, slicing through visions. The prophecies come from the dark. The night was warm, too warm for a fire. Her thoughts flitted like a moth around a candle while darkness brooded around her. I have a fortune to tell, for those who have the stomach to hear. It is a dream of generations, a dream of movement and madness. The house of Lusignan shall flock to me, hungry for an answer, grasping for a cure. So it shall begin. I cannot see the end. Excerpted from Anticipation: A Novel by Melodie Winawer All rights reserved by the original copyright owners. Excerpts are provided for display purposes only and may not be reproduced, reprinted or distributed without the written permission of the publisher.