“What do you mean you’re not going to tell Charles?” I can feel my mouth hanging open; disbelief etched on my face like crude graffiti.
“Exactly what I said. I’m not going to tell him.”
I shake my head, trying to dispel the words attempting to lodge in my cerebrum as solid fact. My new husband’s proclamation hovers between us, something nearly corporeal, the first invisible obstacle upon which our fledgling marriage has stumbled.
“I’m not going to tell David either.”
At this, I close my eyes briefly, struck with a jolt of visceral psychic pain. He closes the door behind us as I toss down my black handbag and kick off my black heels, pulling the clip from my hair. It springs free and resumes its natural state of frenzy, a lifelong burden which Mark requested I tame prior to his ex-wife’s funeral.
“What’s that look for?” he asks guardedly. I’m certain he already anticipates the objection I’m about to draw. He does not anticipate these feelings’ ferocity; how quickly and deeply I have bonded with his sons.
“Mark,” I begin and pause, taking a breath and placing my hand on his bicep before I start again. “I love Charles and David like I grew them in my own womb. They are not my stepchildren; they are my children. You know that, right?”
“Of course,” he says tersely, shifting slightly, so my hand falls from his arm to lay by my side. “They love you, too,” he adds, an afterthought as he turns to walk down the hallway.
“Well…,” I start, trailing after him, fully prepared to advocate all night for these children – for my children. “I’m glad to hear that. I think…”
Mark stops abruptly and whirls around to face me.
“But they’re not your children. They’re my children and Candice’s children, and this was always our decision.”
I reel back. It has been so long since he has said her name; when absolutely necessary, it is only ever “Charles and David’s mother.” Now, it seems sacrilege to have spoken something we’re always forbidden to utter, like it will jinx the boys; like it will rub off.
“But…” I protest uncertainly. “But I…”
“Just drop it,” he commands and disappears into the gloom of the kitchen.
I know he does not mean this the way it sounds. He is grieving. He is in shock. But he is wrong because Charles and David are my children now. Their future is irrevocably tied to mine; their happiness is my happiness.
And I truly believe they both deserve to know.
And I truly believe they both deserve to know.
“Because there is no cure.”
The old name comes from the Greek word for “dance.” That word is “chorea,” and thus this hellish disease used to be called “Huntingdon’s Chorea.” It is a macabre moniker; it refers to the involuntary jerks, and tics patients suffer as their nerves literally break down. Unfortunately, that’s only the beginning because the condition is degenerative. Eventually, patients cannot move, unable to speak, unable to swallow as their mental faculties decline into dementia.
Nowadays, it’s called “Huntingdon’s Disease,” and it is genetic. It is very, very genetic. It takes only one carrier to pass on the gene responsible for Huntingdon’s; only one mother or father, only one of the men and women who answer that Darwinian drive to reproduce, nurture young, and propagate the species. It takes only one chromosome to ruin generations, to ruin human lives. It is hard to grasp the true tragedy of the disease through the sterility of Mendelian genetics, but nonetheless – as dictated by that good old Punnett Square – any offspring born to a Huntingdon’s carrier has a fifty percent chance of inheriting the disease.
You’d think it would be more complicated than that, but it’s not. Fifty percent. Yes or no. Heads or tails. Life or death. A future, or the lack of one.
Because there is no cure.
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“Do you want to know how it was?” Mark challenges. “Do you want to know how bad it got before you were even in the picture?”
“Please!” I say desperately. “I’m not trying to hurt you, or undermine Candice, or insult your parenting!”
We have been fighting for hours.
“But you are,” he states firmly. “You’re saying you know what is better for my boys than I do; than their own mother did.”
“But I’m not!” I exclaim, begging him to see my point of view. “I just think Charles and David need to know what could happen. They deserve to know if this is something they will face.”
“You don’t know anything,” he sneers, anger emanating from every pore. “They had to watch their mother die. Even after we moved out and I married you, they had to see it. And there is no way I’m going to tell them the same thing could be in their future. They’re too young!”
“They won’t be young forever,” I say quietly. “They’re going to ask questions eventually.”
“But they’re not really going to get it,” Mark yells, and I understand everything in a flash of insight. Never underestimate, of course, the power of compartmentalization, the power of denial.
“They’re not going to get it,” he repeats, and turns his back on me to retreat into the bedroom.
I sigh heavily, disturbed and deeply exhausted. I think of Charles and David, safe at their grandparents’ during Candice’s funeral, and feel a flash of terror. I wince; my breath hitches. My emotional mind spirals – I think of them stumbling and stuttering, quality of life draining away, unable to communicate, unable to move – and I have to force my brain away to contain the bile that rises into my throat.
Finally, I toss my wine glass into the sink and walk into the dark living room to collapse on the couch. Right now, I have no desire to sleep next to my legal partner, the father of the children I am legally adopting. Instead, I lie awake until morning.
“Mommy is dead,” says Charles witheringly
There is a test.
It is, to be clear, only a test. It only predicts; it does nothing to heal. It is good for identifying the genetic marker; it is good for letting an individual know what is in store.
A child, for example, who has a parent with Huntingdon’s can take this test; they can see the 50% into which they fall. They can know, as early as infancy, if their life will devolve into something unfathomable before they’ve even had a chance to come into themselves; they can know if they will die young.
But – and here’s the existential part – is that a good thing to know?
Does it help to know the future? Does it help to know now what will come to be? Does it help to risk the loss of hope for the chance to end up with all the hope in the world?
And who gets to make that decision?
“I realize, suddenly, that I will have to make a choice.”
I spread peanut butter on bread, smiling at my stepsons over the breakfast bar. I am making school lunches the next day while my husband showers for work.
“Eat your breakfast,” I encourage.
“I don’t like oatmeal,” complains Charles, the elder boy. He is opinionated and stubborn, the spitting image of his father. David is several years younger, the rainbow baby after Candice had a series of miscarriages, from what I understand. He is thoughtful and soft-spoken; he looks like his mother.
“I know,” I say. “But eat it anyway.”
“I miss Mommy,” says David, apropos of nothing, and I pause with the knife in the peanut butter jar.
“Mommy is dead,” says Charles witheringly, and I hear the agony under his words.
“But I want her,” says his brother, tears starting to fall, and my wise mind suddenly glimpses the future.
I see my stepsons’ graduations. I see their weddings. I see daily life, and vacations, and New Years’ Eves. I see their blissful ignorance to the monster in their DNA. I see the birth of my grandchildren (step-grandchildren, I suppose, but that still makes them mine); I see those grandchildren grow.
Then I lose wise mind, and I see Charles and David, confined to their beds, trapped in bodies which no longer work. I see their funerals before either has reached the age of 40. And then I see the same story yet again, the same tragedy, only it is the grandchildren; and on, and on, until I have to physically dig my nails into the flesh of my forearms to stop the vortex.
“Hey, guys…” I say hesitantly, new to parenting, new to grief. “Your mom…”
“Was very sick!” interrupts my husband, entering the kitchen. He shoots me a glare for mentioning her, then picks up his coffee and briefcase and lays his hand briefly on each of his son’s heads. “But your stepmother and I are healthy, and we will never leave you.”
“That’s right,” I agree, for lack of anything else to do. “We’re always here for you.”
Lunches are collected, and the bus is caught, and I wash the breakfast dishes, deep in thought. My feelings have now surpassed concern, or love, or personal opinion. Now, I feel an ethical obligation; I feel a moral duty. My sons need to know what killed their mother; they need to know before they plan for careers and mortgages before they procreate and unknowingly pass on a death sentence.
My phone beeps, interrupting this musing. It is Mark apologizing for his bad mood, for yelling at me, for making me feel inadequate. He is sorry, he texts, for disrespecting me as his co-parent.
There is a rush of love, of gratitude for this wonderful man – these wonderful children – choosing me. I was alone before; I was lonely. Now I am a vital part of a family, and I realize I also have an obligation to the integrity of this intimate unit.
The hours pass. I clean; I pay bills; I fold laundry. Mark calls, offering to stop by the store to pick up dinner ingredients. He tells me he loves me; that I am a wonderful wife and mother.
The boys return from school, bounding off the bus and bursting through the front door. I give snacks, exclaim over art projects, set them up at the table for homework. My husband texts, saying he was pulled into a meeting; he suggests ordering pizza and promises to be home soon.
The boys and I have dinner. We watch a show, and I draw a bath. The whole time, my emotional mind is focused on Huntingdon’s like a laser; it conjures up what I will wear to their viewings when I am an old lady with custody of their children. At the same time, my logical mind reflects on my husband, on our relationship. It remembers our courtship, our vows; it reminds me of orgasms and security and affection and a lifetime of tomorrows together.
I am torn between duty and respect, between love for my children and love for my husband, between all that is right and all that is easy. Just like Cassandra, I am doomed to know the future but never be heeded; I am the only one who knows what might actually come to pass. I cannot stand this dialectic of truth and falsehood, the conflict deep in my soul. It feels like nails on a chalkboard, like a cat pet the wrong way.
I tuck them both into bed, the door downstairs opening and closing as Mark returns. I hear him enter the kitchen, drop his briefcase, check the refrigerator.
I realize, suddenly, that I will have to make a choice.
I look at the sleepy children beneath their comforters; I think of my best friend downstairs.
“Boys…” I say weakly. “I…,” and I trail off as I realize I have no idea what to say next.
“Which came out of the open door – the lady or the tiger?”Frank Stockton, 1882
Shannon Frost Greenstein (she/her) resides in Philadelphia with her children, soulmate, and persnickety cats. She is the author of “Pray for Us Sinners,” a collection of fiction from Alien Buddha Press, and “More.”, a poetry collection by Wild Pressed Books. Shannon is a former Ph.D. candidate in Continental Philosophy and a multi-time Pushcart Prize and Best of the Net nominee. Her work has appeared, or is forthcoming, in McSweeney’s Internet Tendency, Pithead Chapel, Bending Genres, Epoch Press, X-R-A-Y Lit Mag, and elsewhere. Follow Shannon at shannonfrostgreenstein.com or on Twitter.