Sofia Bae ’22 takes a creative approach on the controversial topic of in vitro fertilization, using a narrative voice to humanize the experience of Jessica Todd.
The first day of school was always the worst. There were whispers when she opened the door to the building, whispers when she walked into her first class, whispers when she sat down and the teacher started talking. She never had to introduce herself because everyone knew her name. It was what they talked about in hushed tones, silently passed notes, the buzz of their phones: Jessica Todd.
But she was used to it by now. In the course of three years, she attended three new schools: none of them lasted for more than a few months before she was pulled out by her worrying father and then homeschooled. Her mother wanted to her to go to school like any other child–like she were any other child, any other daughter in the world–but that was not the case. She was a first and only, and there is danger in being alien.
The bell rang, and she packed her bag and moved to her next class. The whispers followed her through the halls, as if she were wind passing through a field of wheat, and the students parted for her. She knew that they would whisper for a while before the insults began. Test tube baby, they would call her, freak. Monster, inhuman, unholy. These words would be scribbled onto sticky-notes and pasted on her bag. They’d be etched into her desk, sharpie’d onto her notebooks, graffitied on her locker and textbooks until everything she touched would be covered in those words. Mistake, abomination, artificial. Wrong wrong wrong.
“People fear what they don’t understand,” her mother would tell her when she got home, her warm hand on Jessica’s trembling cheek. “You’re just like them, dear. You’re just another girl.”
Somehow she got through most of the school day without any major incidents, but there was one teacher, her philosophy teacher, that was disgusted by her. When he called out attendance, he skipped over her name. When he taught his lesson, he refused to look at her. When he announced their first unit was on metaphysics, he stared straight at her, into her, into every one of her replicating cells. She could do nothing but look down into her textbook and wait until his gaze scraped off of her.
She had a free last period, so she found her way to the school library. It was large and open. The neatly ordered sand-colored bookshelves was filled to the brim with dust-covered books–each section meticulously labeled and separated. The white walls were cracked and peeling, and the whole place smelled like old, rotting books. It was nearly silent, save for the steady hum of the printer chugging out report after report. It felt like time never moved here, as if the whole library was stuck in a bubble. Though Jessica had never been to this particular library before, she knew exactly where she wanted to go.
There was a second floor filled with more cubicles than bookshelves, and it was here that Jessica found herself finally relaxing. Almost no one was up here but her, and the few that were with her were too engrossed with their studies to notice her. She found a cubicle somewhere towards the back, lost in the sea of desks and walls, where she took out her laptop and her journal and began to write.
It is my first day at Fallins High School and no one’s bothered me yet, which is good. Though I don’t think it’ll last. I have a top locker close to the science wing of the school, and I haven’t met the person whose locker is beneath mine. I wonder if they’re nice? If they’re a boy or a girl? I wonder if they’ve already heard about me, though I’m sure there’s no one left in the school who’s unaware of who I am. If they haven’t heard from their parents, or their friends, then maybe from the news, or magazines. I am Jessica Todd, after all. The artificial girl. The girl with no soul. I suppose I am also the girl who won’t get Huntington’s later on in life, but that reward is so far off from now that I don’t even know if it’s worth it.
She paused here, considering to erase her last sentence. But she decided to keep it in. The scientists and her doctors said it was important that she write down everything she was feeling and thinking, to make sure her mind was a sound as the next. She felt bitter about this, but it had to be done.
I just still don’t understand! What difference does it make that I was genetically edited? I was only an embryo, if such a thing can even be called me, and if anything I am more like the average person than I would have been otherwise!
This was not the first time she had written something along these lines. Every since she’d learned to read and write, she consistently expressed her frustration in each diary entry. But there was nothing else she could do. She had no friends to vent to, no one else in existence to commiserate with. The scientists and doctors would nod and jot down some notes, attribute her feelings to the circumstances she was in and the fact that she was a teenaged girl, and she knew that telling her parents would only fill them with guilt and a sense of helplessness. So she closed her journal and fell asleep.
Jessica woke to the sound of her parents angrily whispering. They seemed to do that whenever they thought she was asleep, but the walls were thin and their arguing loud enough to be heard from anywhere in their little house. She rolled out of bed and shuffled downstairs. When her parents saw her, the whispers stopped, and a heavy silence filled the air. There was a bowl of cereal and milk on the table.
Her father was a freelance writer, submitting articles and commissions to established magazines and newspapers. He read everything he could get his hands on: the newspaper, the online news, Twitter, Facebook, Times Magazine, the Scientific American, blogs, and more. He, out of all of them, was the most acutely aware of what the world thought of his sixteen year-old daughter.
Her mother was a geneticist. When they decided they wanted a child, she was the one who suggested that they both get genetically tested. It was her mother who talked her father into it, for hours a day for days. It was her mother who knew that Huntington’s disease ran in both their families, what it could mean for both of them and their future child. It was her who, when the results came back, joked that they should buy lottery tickets. It was her who stayed calm, who thought of a solution so that their child wouldn’t suffer the same end as them.
Today was a Friday. She left home, but she could hear her parents whispering again even before she closed the door. Her father raised his voice. He could be yelling any number of things: that she shouldn’t be going to school, that she wasn’t safe by herself, that for all anyone knew she could collapse at any minute and die. She didn’t get to hear her mother’s response.
At school, she made her way to her lockers. She was no longer given a wide berth. The bustle of school life overriding anyone’s urge to avoid her and stare. When she got to her locker she saw a girl standing in front of it, holding colorful little post-its. Jessica could feel the way her shoulders slumped and she slowly shuffled over, looking at the floor. She was prepared for whatever was written on her locker.
She was so engrossed with looking at the floor that she bumped into the girl, who let out a startled shout. Little colorful squares fluttered to the floor, nearly illegible words printed onto them. Nearly.
“I am so sorry,” she said, “I didn’t mean to like, go through your locker or anything. I didn’t open it, I swear, I just, I saw some people leaving notes on it, and I thought it was cute until I saw what was written on them, and then I thought that wasn’t fair, you know? It’s the first Friday of the school year so they should all just chill.”
She was taller than Jessica, tan with big brown eyes and dirty blonde hair. She was pretty, and she dressed well. Jessica knew she was not someone who would normally talk to her willingly.
“Hey, I’m Susan, ok? But call me Sue, all my friends do.” She held out her hand and Jessica took it, slowly, still unsure of how to act. Was she supposed to introduce herself now? Did Sue not know about her?
“Um, I’ve heard about your, well, you. I’ve heard about you. And I don’t really get it cause everyone tells me something different, but I mean, you’re still a person, right? So. Yeah. And post-it notes are so juvenile. I mean, we’re Juniors.”
When the bell rang for first period, Sue made a quick goodbye and went off, camouflaging with the rest of the crowd. Jessica could only wave, and the rest of the day went by in a daze.
She decided to stay after school in the library, not yet ready to head home. As soon as she texted her father this he texted back, a small barrage of Are you sure, and Is anything wrong, and what if it isn’t safe?
Dad keeps on worrying. I think he’s been looking at the old files, the ones the scientists let him have after he signed mountains of paperwork. He can’t write about the files the scientists gave him, can’t tell anyone unauthorized about them. He won’t tell me what happens if he does, but I can imagine it isn’t good. The files make my dad bite his nails, a habit he once got rid of before college, but my mom hardly pays them a second glance. “It happens,” she says. “It’s the frontiers of science. Things occur, sometimes bad things, and it’s our job to find out why so they don’t happen again.”
The files are of the others, the ones who, like me, would have had Huntington’s if they occurred naturally. They’re labelled by the names of the parents, and contain how many embryos were worked on, how many were carried to term, how many were spontaneously aborted early on. They’re at least two-hundred, and most of the files only a few sheets of paper thick.
Most of them are stamped with big red X’s.
My mom pours over them: the conditions of the embryos, if there were any concerns during the Crispr-Cas9 operation, the health of the mothers, the area they lived in and how wealthy they were, known fertility and any known or potential genetic disorders of either of the parents. Anything that would explain why so many failed so early in the process.
There were a few that made it to term, myself included. More than half of them died before they were 5 years old though. My mom says they’re just working out the kinks in the system, that they’re so close to figuring out all the nuances of the gene-editing technology they’ve finally gotten permission to use. She looks at me sometimes, and into my cells, and she whispers, “sometime soon, there’ll be more children like you. Completely unafraid of Huntington’s. And sometime in the future, I’m sure, no one will have to worry about sickle cell, or down syndrome, or cystic fibrosis, or more. Sometime in the future.”
Only one other has lived as long as I have. Andrew Brown. He was one of the first and his success made everyone, my mother included, when she was young, believe they were close to complete master of the Crispr-Cas9 system. And here she still is, 30 years later, still working the same problem, still ‘so close’ to understanding it. I hope she does, someday, because I’m certainly not carrying on her work if I’m the result of it. Today someone wrote tubie on my phone case, right on the back, for everyone to see. I’m going to need another one.
She paused after that, felt the weight of her next sentence in her pencil.
Remember that dad is right to be worried. Remember that Alexander Brown was shot, 3 days into his first week of college.
If she could, Jessica would have spent hours telling Sue about herself. About all her favorite books and movies, her favorite places to read, the best spots in the library to take a nap. Her journal and her dreams, and what she hoped her future would look like. In that future there is a husband, who doesn’t know about the controversy in her flesh. There is a small house somewhere in green field, dark ivy crawling up past the windows, a sense of contentment. No children, though. Even in her dreams Jessica didn’t want to put another child through an isolation like hers.
But how could she explain her situation to Sue? Jessica can’t bring herself to try. As sweet as Sue is, and as kind and friendly and bright, in Jessica’s eyes, she couldn’t care less. Jessica wanted to be frustrated that the only person who was willing to talk to her didn’t want to know about what she was going through, but Sue’s obliviousness was probably the only thing that kept her amicable. And while Jessica wanted more, she knew she could settle for less.
Sometimes she would get mad at Sue, incorrigibly jealous of how she took her easy life for granted. She would watch as Sue walked down the halls and people smiled at her, wanting to talk. The way boys would stare and the way their hands lingered on her shoulders, hands, back. The way Sue could take her future health for granted, how normal she could be without a price.
Sometimes Jessica couldn’t bring herself to look at Sue. She wished she understood. She wished everyone understood. Understood how she felt, how she was, understood that now, because of science, she would be able to grow into a healthy old age.
If she could, Jessica would explain her situation to everyone during an assembly.
Her explanation would look like this.
I am a person, just like you. I wake up and brush my teeth so I don’t get cavities. I eat three meals a day. I sleep. I don’t like school that much at all. The only difference between you and me is that, in order to be healthy when I get older, the embryo that would become me underwent genetic therapies to edit out the ill effects of inheriting the Huntington’s Disease mutation inside of me.
We are all made up of cells. Billions of them. Inside of each and every one is a nucleus, and inside that nucleus is our DNA. Our DNA is made of nucleotides. There are four different nitrogenous bases that can be in a nucleotide: Adenine, Guanine, Cytosine, and Thymine. The entirety of our DNA is called the genome. Our genome is filled with genes, which are certain segments of DNA. Everyone has genes, and the genes you have come from your parents’ genes.
My parents both have Huntington’s Disease, which means that when they get older, maybe not even that much older, the nerves in their brains will begin to break down. They’ll suffer movement disorders–they’ll have trouble speaking; they’ll involuntarily jerk or writhe; they’ll have muscle rigidity and abnormal eye movements. They’ll suffer from cognitive disorders: they won’t be aware of their own behavior; they won’t be able to focus; they’ll repeat a thought or action over and over. They’ll suffer from psychiatric disorders: they’ll have insomnia; they’ll feel irritable, or sad, or apathetic; they’ll stop wanting to see their friends, and they’ll start to want to die.
Jessica paused, thinking carefully. Was this too much? Too graphic? But it wasn’t, she knew it wasn’t, because this was her parents’ reality. This was other people’s reality, and that she, Jessica, would be ostracized for not having this disease filled her with a deep set anger. If she could, she would yell this at everyone she met, demanding to be heard.
No one deserved this.
Everyone has a huntingtin gene. This gene typically has 35 or fewer CAG repeats. Huntington’s Disease is a mutation that occurs in this gene, where affected individuals have more than 35 CAG repeats. Some people have upwards of 60 extra CAG repeats, and they end up developing Huntington’s at age 20 instead of 30-40.
Huntington’s Disease is an autosomal dominant trait. That means it affects boys and girls, and if you inherit one mutated allele from either your mother or father, you’ll have Huntington’s Disease too. Both my parents have Huntington’s Disease. I’m supposed to have Huntington’s Disease.
But my mom has been working with a tool called Crispr-Cas9, which can enter a cell and edit the DNA within. It can be programmed to target a certain section of a certain gene, and to insert or take out a segment of DNA.
My mom was part of a study, first as an administrator and then as a volunteer. She and my dad wanted a child, but they didn’t want that child to suffer like they would. So she partook in a study which inserted Crispr-Cas9 into several embryos, fertilized eggs, all of which had the mutant huntingtin gene.
So scientists and doctors needed to find a way to neutralize the ill-effects of the mutant huntingtin gene. So they ran two experiments: one which cut out the extra CAG repeats, and another which changed Cas9 into RCas9, which targeted aberrant RNA instead of DNA. I was part of the latter group.
And so far, two people have survived the latter treatment. Me, and Alexander Brown, who was shot and killed when he was 18 years old.
While there have been many other tests which have not been as successful, and yes, Crispr-Cas9 can interact with other unplanned segments of DNA, which can lead to unforeseen effects. But that’s why I am here, and why my mother is working and researching this field. To work out all the issues, make this process safe and accessible to anyone who needs it. Because of it, I’ll be there to take care of my parents, when they get older, and when they lose their ability to move and to think, I can be there for them and thank them for helping me escape a similar fate.
She hated her philosophy teacher.
Jessica had been in his class for months now, and she always did the homework, always studied for her tests, always appeared on time. She never raised her hand, though, and her grade suffered for it. Not only that, she always seemed to miss one or two points on every quiz–always for something completely arbitrary. I couldn’t read your handwriting here, he wrote in red pen, or the birthday of every philosopher is an important one.
Most of her teachers didn’t seem to care much either way; she was just another odd student amongst the rest of them. She made sure to study hard and stay quiet and always hand work in on time, and most teachers appreciated that, so they left her alone. She got mostly A’s in the first semester, aside from philosophy where she had a B-.
Sue didn’t believe her until she saw the physical report card card herself. “That’s amazing, Jessica! You even got an A in physics. I’m so jealous; I got the class average with a C+.”
They started packing their bags, preparing to go home. Jessica again felt a stab of jealousy against Sue–Jessica, too, wanted to be okay with performing poorly. However, she had to be a role model, an ideal, a standard. Even the B- in philosophy was bad; she could already imagine her father, pouring over news articles on how his daughter, the test-tube baby, was having difficulty with philosophy, with understanding how people experience and think about things. She could already imagine the influx of insults: soulless, inhuman, wrong.
Her father would probably want to homeschool her again. It was a shame, really, because Jessica kinda liked this school, and now pretty much everyone left her alone. And Sue, who was nice to her, made all the difference. If she hadn’t met Sue she would have left this school months ago.
As she and Sue began to leave the building, Jessica could hear a snicker behind her, and heavy footsteps following her. She kept her head down and walked a little faster, hoping whoever was behind her would just leave her alone, but the footsteps sped up and a heavy hand landed on her shoulder.
“So you’re the golem, huh? Come on, speak. Can you, actually? Do you understand what I’m saying? Repeat after me: Fr-ea-k.”
Jessica shouldn’t have been as scared as she was. People came up to her all the time, sometimes to glare, or shove her a bit, sometimes they spat at her. But he got all up in her face; she could see the pores on his skin and smell the stench of his breath.
“Let her go! What do you think you’re doing?”
Sue rolled up the papers of Jessica’s report card and hit him over the head with it. He grabbed her arm, and the papers scattered across the floor.
“A’s? She got A’s? What the hell?” He paused and glared at Jessica with a mix of confusion and anger. “Do you know what, I bet they made her super-smart in the laboratory they grew her in. Did you come here to spy on us, you mutant? To learn how to be normal? Or was it to gloat? Show off how much better you are than all of us?”
And to Jessica’s growing horror, the circle of kids gathered around began to murmur their agreement. It’s almost impossible to get an A in math; it makes sense she’d do poorly in something like philosophy, you need to understand people to do well in that class; I bet that’s why she’s so pretty, too; she’s always so quiet, maybe she really is just observing us; yeah, she’s kinda unsettling now that you mention it.
He sneered in her direction. “You really thought you belonged here? With us? You think you’re so much better than all of us here? Well, not everyone gets to be super-enhanced by crazy scientists. Not that you’d understand.”
Sue wrenched her hand out of his grip. “What’s wrong with you, you massive, absolute bully? Just leave her alone! She’s just trying to go home.”
“Yeah, so they can hook her up to tubes in a fish tank or something.”
“You can’t honestly think that you son of a–”
“Why’re you defending her, huh? Are you her girlfriend, or something? Going out with the creep? Huh?”
And Jessica could see Sue freeze for a fraction of a moment, and both of them became aware of the whispers of the students around them. The wind changed, and the sharp little whispers darted over to Sue’s ears, where they rested and murmured to her. Jessica could see the change in Sue’s posture, from aggressive and wide to closed off and unsure. “Her girlfriend? Why would I want to hang out with her?”
That was it, Jessica knew. That was it. Sue wouldn’t talk to her anymore after this. The whispers would start up again, as violent and nagging as they had been the first few weeks of school. She’d get in trouble for this incident, and once the media found out they’d have a field day: Genetically Edited Child Overly Aggressive; Result of Crispr Experiment Can’t Socialize Properly; Do You Want Your Child Going to School with This?
Jessica turned away and ran, out the door, down the stairs, into the street, into the forest. She ran and ran and ran, her heart pounding in her ears, her face red and wet. She ran until she tripped and then she stayed there, on the floor, breathing heavily until the tears stopped and her arms and legs were shaking from exertion and the cold. She laid there and she thought of Alexander Brown, that Alexander Brown. She wondered how he felt. Her shaking hand started writing in the mud.
Do I feel like you felt? Did you feel what I feel? It’s cold here, in the mud, Alexander Brown, cold and alone. I wish I could be swallowed up by the earth, swallowed up and held and hidden. It’s just a body, Alexander Brown, and the world accepts all bodies, even yours, even mine.
The earth accepts every body, because we’re are all just flesh.