A child is born with a rare and fatal disease, coming to grips with what it means to live.
|Lannie was born March 4th, a thin, pallid baby with hardly any breath in her lungs. She lay on the cot, swaddled in a pink, fluffy blanket with matching knit cap and slept fitfully, her small face scrunched in unease.
Anne looked down at her new child. She could still feel her kicking in her womb, remember the joy she'd felt when the doctor had told her the good news that she was pregnant. The same doctor who had come to her wooden-faced a few months later with the results of the prenatal tests. The unborn child had Geirart's disease, a rare and fatal disorder in which the blood and nerves of the body slowly start to wither, the disease working inward from the extremities until it eventually attacks the heart, lungs, and finally the brain. The oldest recorded human with Geirart's disease had died at 16 years old, entombed in a limbless, rotting shell.
The doctors begged Anne to abort the pregnancy. They said she could try again, that the chances were extremely slim that the next would have Geirart's. But Anne had refused. She'd sung to Lannie, read her books, and smiled when she kicked. She'd rub her belly, assuring the unborn Lannie that the world would want to meet her, and that although the future might be scary, it was worth living.
It wasn't until just past her 1st birthday that the ends of Lannie's fingers and toes began to turn blue, and she would whimper, sucking on her hands and shaking. Despite the experimental drugs she'd been on since birth, it seemed Geirart's had begun. Anne took her to the hospital where a team of doctors gathered around, poking her and hmm-ing, testing her blood and examining her fingers. It was confirmed that Geirart's had indeed come for Lannie, and there was nothing they could do to stop it.
Anne decided that the best course of action for her daughter was amputation and prosthetic limbs. Medical science had come a long way, and although neurally-controlled prostheses were still in their infancy, they offered Lannie a chance at a somewhat normal, pain-free life. The decision was taken all the way to the Supreme Court. The medical procedure had never before been done on an infant, and it was undecided whether it was ethical to subject someone to it, if they could not vocalize consent or dissent. It was ultimately declared legal, but the judges attempted to claim what moral high-ground they could by also protesting loudly that Anne had allowed the pregnancy to continue. They vowed to stop such ethically reprehensible decisions in the future.
By age five, Lannie had prosthetic hands and feet. She could run, climb, and play with the other children. But she was told she shouldn't stand too close to the microwave. Anne tried not to hover over her, but she had all the same protective instincts as other parents, amplified by Lannie's unique condition. When Lannie came sobbing into the kitchen one afternoon clutching her hand to her chest, Anne's stomach did a somersault, though she tried not to let it show. Anne bent down, softly stroking her daughter's hair with one hand, while the other gently pried apart Lannie's hands. She saw threads of cracked fiberglass and blood at Lannie's wrist. Bone protruded from the skin just before the transition to metal.
“Ooh, Lannie what happened?” Anne asked softly, trying to keep the worry from her voice.
“I.. I fell off the tree and.. and I landed on my hand.. and.. Mom it really hurts.” Lannie sobbed.
Anne stroked her short blonde hair and kissed her forehead. “There there Lannie, it'll be okay.”
Anne took Lannie to the doctor's office, where a splint and cast were administered, and eventually a new hand.
It wasn't until her 7th birthday that Lannie noticed a pain in her wrists and ankles. At first she thought the prosthetics were simply too small. She'd grown out of a number of hands and feet at this point. But it had only been a few weeks since her last replacement, and they seemed to fit perfectly. She rubbed them, trying to get the constant, aching pain to go away. Her mother noticed and a crease appeared above her thoughtful gray eyes.
Geirart's had continued its slow creep to Lannie's brain. It etched itself into the flesh at Lannie's wrists and ankles, a gray-green pallor seeping into her skin, her hands and feet responding sluggishly to her commands. Eventually, Lannie was given new forearms and calfs. She spent several weeks in the hospital, eating nothing but strawberries and ice cream. When she got home, she spent another several weeks moving slowly about, getting used to her new limbs. She had wept the first few days, missing her old body, wishing she were normal like the other children. But her mother had held her, rocking her gently and singing to her, telling her it would be okay. Lannie had listened, and tried to believe.
In fourth grade Lannie won the spelling bee and got second place in the science fair, as well as celebrating her 10th birthday all in the same week. It was almost too much to take in. She ran about the house on metal and fiberglass legs, holding her yellow ribbon and neatly-printed plaque aloft in rubberized fingers and squealing happily. The next week, her friends noted her absence from school. Lannie had to go back to the doctor's office, this time her knees and elbows ached, her fingers and toes twitched uncontrollably. The doctors warned that the next stage of the disease would be more difficult. Geirart's had begun to make its way to the larger muscles and tendons, and the body would begin to react more violently.
Lannie was in bed for over a month this time, barely able to lift her head, her limbs awash with pain despite the numbing medication. She didn't cry, however. She simply lay there, too weak to feel much of anything, only wishing she could get up and go outside, go see her friends, her dog. Anne stayed by her bedside whenever possible, but couldn't be there 24 hours a day. When Lannie finally took her first few halting steps on new compressive-distributive thighs, steadying herself with new semi-hydrostatic biceps, she realized that life would be tough, but she tried to remember what her mother had told her.
When Lannie was fourteen she had her first crush. His name was LeBron and he had gorgeous green eyes with simply amazing curly brown hair. He was nice, and after some convincing, he agreed to be her boyfriend. Anne wasn't thrilled. Fourteen seemed too young for having boyfriends. Her own first serious relationship hadn't been until college. But she didn't say anything. Lannie was overjoyed, and LeBron seemed nice enough. It was in Honors History II that Lannie passed out. Lannie's classmates were understandably upset, and the teacher immediately sent for the school nurse. Anne was called at work and panicked, crying all the way to the school. Lannie woke in a hospital bed, her mother clutching her metal hand and looking as if she hadn't slept in days.
“Hey Mom... what happened?” Lannie asked.
“Oh honey... you passed out.” Anne replied.
Lannie paled. “At... school? Did anyone see?”
“That doesn't matter. Your friends are just worried about you, and want you to get better, that's all.”
But Lannie wanted to crawl into a hole and die. She would be the laughing stock of the high school, or at the very least the subject of every gossip session from here until the end of time. It was a few days later that LeBron broke up with her via text. He said he was sorry, but it was just too much, and they hadn't really been together very long, and he really hoped she would get better soon. Lannie had cried for days.
They said she'd nearly died during surgery. Her heart had stopped for a full 2 minutes. It was only thanks to the machine pumping blood through her system that she was still alive. Her heart, lungs, and lower intestine were now completely artificial. She would have to go back in a few months to have the upper half of her intestines, her stomach, and various other organs replaced. Until then, she could only eat a very restricted set of foods. Even more restricted than before.
When she got home, she refused to leave her room, she wouldn't even get out of bed. After three months, Lannie tried to kill herself. She took half a bottle of the pain killer she'd been given. Anne had rushed her to the hospital and they'd pumped her artificial stomach. As soon as she was well, Anne had given her a verbal lashing of which Lannie had thought her incapable. It frightened Lannie, coming from her normally calm, even-tempered mother. Anne had railed at her, calling her selfish and stupid, shallow and short-sighted. Then she'd yelled at her about how much good she could still do, and how life was hard and the future was always uncertain, but you had to fight and try to make the world a better place, and to stop feeling sorry for yourself. At the end they'd both cried, and Lannie had come out the other side respecting her mother more. She was now determined to make the most of what she had, instead of focusing on what she didn't.
Lannie finished high school, breaking records as the oldest-ever living person with Geirart's Disease. She got a full-ride scholarship to Artifact's College of Prosthetic Medicine, which surprised no-one. It was only three months in that Lannie had her second ever crush. Her name was Malory, and she had the same big green eyes as LeBron. She laughed without reservation, seeming to lean forward in everything she did, seeing the world as if through a magnifying glass, her large greens eyes made even larger by her thick, horn-rimmed glasses and halo of frizzy hair. Each person she met was a strange and fascinating creature, worthy of love and attention. Lannie never felt singled out with Malory. She felt like she belonged, that Malory wanted her there. She never felt singled out for being strange, because Malory found everyone and everything strange. But Malory seemed to enjoy Lannie's particular brand of strange the best.
Lannie graduated college top of her class, with Malory standing beside her. Together they were a formidable team. They had already broadened the field of prosthetic medicine far beyond what was expected of students, and they hoped to continue to break ground and change lives. By this point, Lannie's condition had progressed so far that her artificial body extended all the way up to her neck. She herself had designed and built the joints which fused to her spine directly below her brain. She was a marvel of modern medicine, but they still had not found a way to stop the spread of Geirart's disease.
Just short of Lannie's thirtieth birthday, her artificial heart went into cardiac arrest while she slept in her quiet country home east of Minneapolis. Malory was alerted automatically by the integrated monitoring system they'd installed together, and she drove Lannie the 4 miles to the hospital where they both worked. It took nearly six hours to stabilize her, but she lived. They both agreed she didn't have long left. Lannie called her mother and gave Anne the bad news. Anne was there the next day, hugging her daughter and holding back the tears she'd held back since she was born. Lannie reassured her that everything would be okay.
The next day Lannie got on a plane to a far away country, one that didn't have an officially-recognized government or stable medical infrastructure. She met with a man who introduced himself as Dr. Lang. As they walked the few blocks from the strip of dirt that served as the airport to the train station, they passed a woman sitting on the sidewalk, leaning against a building. Her arms and legs were covered with a thin shawl, but Lannie could tell they were withered and unusable. The woman's face was dark, her eyes half closed. Beside her was a bowl, which Lannie guessed was for money. She stopped, and bent down to the woman, who's eyes opened slightly to look up at Lannie's synthetic skin and greying neck. Lannie's guide waved a hand and said something. Dr. Lang translated.
“He says ignore her. She's not even human any more. Just flesh that hasn't yet learned to die.”
Lannie stood, reaching in her pocket for some change and dropping it into the bowl beside the woman. The guide shrugged and looked away, as if finding her painfully naive. They continued to the train, which took them halting and sputtering to the hospital. It was small, smaller even than Lannie's house back home, but it was clean and the machines were modern and sleek-looking.
Dr. Lang led her to a brightly lit room populated by a single table. He motioned for her to lay on the table as he began to wash his hands in a sink in the corner of the room. Lannie's heart beat in her chest as she looked at the table, stark and white in the bare room. She'd had countless surgeries, but none like this. This was the last step. Like the ship of Theseus, she wondered at what point she was no longer who she had been. She remembered reading somewhere that all the cells in the human body are replaced every seven years. So after seven years, not a single part of you remains the same. And yet, you are considered the same person. You have the same social security number, the same name. But you think and act and are so different. Who, then, was she now? And who had she been before? And who would she be in the future?
She looked again at the table, and thought of the choice before her: to struggle on with life, or end it. To be, or not to be. She could end her suffering now. She could stop the pain before it consumed her mind, before it drove her into the shame of helplessness that comes immediately before death. There was no honor in living. But it would end here, in a country far from home, with a man she'd only just met.
Or she could live, for as long as she was able. She would suffer, her body would fail and there would be no replacement for her brain. She would wither, her friends and family would watch her inevitable decay and be unable to help. But they would be with her, to the very end. And she would fight, to the bitter finale, the closing of life's final curtain. Was it noble? Or stupid? Who would judge her either way?
Lannie swayed, the weight of her decision causing her to become dizzy. She didn't know what she would decide. But ultimately, she would decide.