By Sarah Stankorb
“So what are you having tested?” a woman wearing too much make-up and hospital scrubs asked me in the surreal confines of my kitchen. The testing company did home visits. This gruff woman with her rushed demeanor and pink and turquoise eye shadow had come to draw my blood.
“I have a neurological movement disorder,” I said. My arm was laid straight atop the counter with my hand in a tight fist. She wrapped my biceps with a rubber band tourniquet then began shuffling through a box that held orders to check me for DYT6 genetic mutations.
She didn’t look up.
“I mean I have dystonia, and whatever form I have is probably genetic because my mom has it. But I guess my doctor thought it would be helpful to know if it was this particular genetic mutation.”
She shoved forms into a box.
“My veins roll.”
“Thanks for telling me.” She fingered a blue line on my left arm. “I think we’ve got a good one here.”
Perhaps it was because we were in my kitchen, a place where stories are told. Maybe it was her detached silence as she gathered tubes, alcohol wipe, cotton. It was like the trick my therapist used to play, going silent to make me fill the air with my words.
“I’m getting the test because of my daughter, because she might have it.” It was a secret fear I had shared only with my neurologist and my husband.
When Zoe was a newborn, she’d curl onto her side like a caterpillar, legs bent to chest. But her head pitched back as though she were trying to touch the fine wisps of her black hair to her spine.
“Look at that,” I whispered to my husband, Michael, the doctor, the pediatric neurologist. “That’s not normal.” She was two weeks old. She shouldn’t have been able to roll in her bassinet.
“She’s fine. Maybe she has reflux. Let her rest.” I could tell he was just putting me off.
“We’re going to let her sleep, that’s what we’re going to do.”
I remembered back to when I had been a teacher, to a batch of chicks my class had raised to learn about development. Amongst the healthy clucking fluff balls, there had been a deformed one whose head pitched back, its neck a curly-Q. The other chicks, instinctively, had tried to peck it to death. Animals, so often, thin their own herds, keep their genetic lines clean.
“What if she’s got it?”
“If she’s got it, worrying about it won’t help. We’ll help her when the time comes.”
I crossed my arms and looked at my baby, her round cheeks, lips that pouted sullenly in sleep, my lips. I worried about what else she’d inherited from me.
There was a time, before I had children, when I cared only to have a name applied to my limp, my jerky hand, a voice that catches on vowels inside my throat. At that time, I was certain diagnosis meant cure. But over years of neurologists, a smattering of drugs, Botox shot into my muscles to deaden-overactive nerves, being able to wear the moniker “dystonia” has done little to improve my symptoms.
Year by year, my voice becomes just a bit harder to understand, my movements just a bit less refined. It’s a long slump of deterioration ahead, I know, because my own mother serves as archetype. She with her walker, she with her rasp of a voice, she, the woman I love dearly, who I so deeply dread mirroring with age.
But these are my fears, ones I allow myself to quietly own.
Years ago, when Michael and I were just dating, I’d had my first MRI in hopes of finding (and in hopes of not finding) some physiologic reason for my unwilled movements. I was embarrassed, thought that if I didn’t tell my grad school friends about my medical issues, the symptoms themselves would be undetectable. I didn’t tell my mother about the tests, because to some part of me, it felt like a betrayal. That in wanting to cure the disease we shared, I was rejecting a part of her.
“I told my parents. They’re worried,” Michael, my then-future husband told me over the phone. I didn’t recognize his concern, his need to talk to someone about the mysterious impulses that shook the woman he loved like a spastic marionette.
“You weren’t supposed to tell them.” I sighed. “What did they say?”
“They’re worried. Mom asked, ‘But what about the children? Will they get it?'”
“She can go to hell.”
I’ve spent years furious over her concern for children I wouldn’t have for another half-decade. It made me sense a certain dirtiness in my blood, a filth that she didn’t want infecting her clean family line. It made me wonder if she thought my mother reckless for having me. Her words cut to the quick of fears I already carried myself.
Time passed. Whenever I needed reason to harbor resentment toward my mother-in-law, those words were at the ready. But a few years into marriage, my husband and I agreed it was time to start trying to make a baby. I went off the pills (birth control and dopamine), took long walks, did yoga, and hoped whatever trap lay within my DNA, it would skip a generation. My husband told me that most forms of dystonia, when genetic, tend to appear more often in girls. It’s rarer in boys, but then, the symptoms are often worse.
Needing to hinge my hopes on something, I began praying that we would have a boy. I was playing the odds that a girl would inevitably end up inheriting this disease, but a boy, he might be something different, something more like his father, with his careful hands, his fit body.
When he was born, I noticed our son’s chubby cheeks, his lips, his overbite—they were mine. The mystery that had been kicking and tumbling inside of me for months had also performed that most beautiful genetic miracle: my son looked like me. But a darker thought perpetually terrified me, that he would be like me.
On that first day, I studied him carefully, wondering whether he would keep breathing if I looked away, how someone so small could possibly cry so loudly. I also kept watch to see if his hands might tremble or if his voice would quake like mine. Though I would love him just as much, perhaps more, if he shared my neurological disorder, there was an ugly pit inside me that feared it.
Our son grew, as most children do, despite our fears. He crawled early, walked by ten months on legs built solidly, like small, pink tree trunks. He exhibited my husband’s focused temperament, my laugh and stubbornness. We dealt instead with the typical parental challenges: how to overcome tantrums, keep bedtime routines. Thus far, he’s the model of health.
When I got pregnant for the second time, it felt as though we were testing fate, staying too long at the roulette table. This time, with the warm glaze of sonogram goo slathered on my belly, I met my daughter.
When the sonogram tech smiled and said, “It’s a girl,” my breath caught. “She seems healthy and strong.”
And Zoe is strong. It’s as though she possesses the Platonic form for “strong will.” Ask her to do something to which she’s disinclined and you’re likely to suffer a head butt to the sternum. Put her down for a nap when she would rather be awake and the wrath of Athena shakes our nursery. But she delights with a laugh that makes you feel as though you’ve won a prize; a giggle from her requires both humoring her and proving your very worth as a human being.
But she tumbles when she walks. She’s been walking for nine months now and still splatters on the floor for no clear reason. When she dances, she arches her back, one arm stiffly bent like a brawny Rosie the Riveter.
I think about my family tree on my mother’s side. My grandmother, graceful, whip-smart and chasing her mysteriously sick daughter to every doctor she could find to be met with no diagnosis, no good treatment. My mother, unable—perhaps unwilling—to see my funny arm movements as her own, noting the slanted wear of my shoes but never mentioning my limp. If my grandmother obsessed over my mother’s illness, my own was compelled to deny its existence.
And I have landed between—superstitious, feeling as though voicing my fears outside the safe circle of (doctor) husband, doctor would somehow bestow Zoe with the symptoms that will mildly disable her. I dread for her years of people not understanding her voice, not hearing the brilliance that I’m certain resides within her. I worry—seeing symptoms in her so early that I only noticed myself in elementary school—that whatever gene bends our faulty family nervous system, that something has mutated again. That things will be worse for her.
And I say this, much of this, to the woman standing in my kitchen drawing my blood. I look away as the gush of dark red fills the plastic vial. There is so much in that tiny tube—a possible answer, a marker. If the test comes back positive, we could have Zoe tested, have a better sense of what is to come.
“That was quick, right?” The woman asked, nuzzling my blood into a box for shipping. Only two facilities in the country test for this particular mutation. She looks around my kitchen carefully for the first time, eyes tripping over the torn-out coloring book pages on my fridge.
“You got kids?”
It was as though I hadn’t said a word to her, hadn’t spent five minutes divulging how deeply I feared my jangled DNA would ruin my daughter’s life. People do this to me often, pretend to listen, pretend they can understand me. She hadn’t been listening anyway.
“Yeah, two.” Keep the words simple, comprehensible.
She nods, smiles, and bustles out the door to her next appointment. I’m just a pit-stop for her, one of over a dozen people from whom she’ll draw up a small sample, a little blood, a tiny scrap.
I shut the door, not knowing what the results will be, but having just admitted my fears to a stranger—even if she didn’t hear me—I recognize that I’ve begun to accept what the future holds for my little girl. My doctor had told me knowing the genetic marker for my disease might help someday with finding better treatments. Identifying one more person in the population with this rare disorder could help advance research. I’ve done my bit. But I already know what I need to know about Zoe.
She’s mine. She’s mine in ways that one day may infuriate her, may one day impinge upon her outsized personality. But the shame I’ve carried around because of this thing, that can’t be for her.
My blood, so quickly let, may harbor that rotten mutation, but I would not have my children if not for all the rest. I’ve been watching her fall, but missing her run. I’ve been listening for cracks in her voice so closely it’s obscured the beautiful ring of a toddler’s call of “Mommy, Mommy.” I studied her contortions, but missed the dance. And for her sake and mine, I need to begin seeing her as I wish to be seen, something whole.
Sarah Stankorb’s work has appeared in The New York Times, Salon, TheAtlantic.com, CNNMoney, GOOD Magazine and others. She studied ethics at the University of Chicago Divinity School and learned to be good living in Ohio. Follow her on Twitter @sarahstankorb.