Sometimes it feels as if Huntington’s is the only thing she knows. Her head is filled with thoughts of nothing else. HD. HD. HD. She looks up at Felix, his brown eyes focused on her, waiting, wanting her, and she wants him, too. And then she’s struck in the heart with what she knows other than HD, the unavoidable truth and the courage to speak it.
“I love you.”
Felix softens. He hugs her and kisses her gently on the lips.
“I love you, too. I know what you’re going through is terrifying and unfair and really hard. But you have to go through it. Right now, you’re just standing still. You’re sinking in it. Let me hold your hand and go through it with you.”
Katie nods. “You’re right. I want to do that.”
Felix smiles. “Good. I love you if you do or don’t have the gene, but I’m not doing a long-distance relationship. I’m not interested in seeing you on FaceTime or Facebook. I want to be in this with you, in person. All or nothing.”
“But—”
“I’m sorry, but at least I’m being clear on what I want. Can you get clear for me? For us?”
“It’s like you’re giving me an ultimatum.”
“I’m leaving in four months,” he says, his outstretched hand pointing out the cardboard boxes. “You don’t seem to grasp this. I feel like you’re deciding not to decide, and then the day will come, and I’ll go and you’ll stay because you never decided what to do.”
He’s right and he’s wrong. He knows her so well. She’s totally stuck. She can’t make any decisions. Does she get her results, or live not knowing her genetic fate? If she gets her results and she’s gene positive, does she break up with Felix or stay with him? Does she move to Portland with Felix against her dad’s wishes, abandoning her family in their time of need, or does she stay in Charlestown?
If she had to give an answer today, she’d honor her father and stay. Interestingly, if HD weren’t in the picture, her dad practically forbidding her to move with Felix might’ve pissed her off just enough to send her packing. But HD is smack dab in the center of the picture, and her dad’s influence gives her one more valid reason to pause, legitimizing her stagnation.
To be or not to be, that is the question. And so far, the answer has been radio silence. But she grasps that whatever she decides or doesn’t decide, Felix is moving in four short months. She grasps this every hour of the day.
“I’m sorry. I don’t know what to do,” she says.
“About the test results?”
“For one thing.”
“I think you should find out.”
“You do? You didn’t even want me to do the testing.”
“Not knowing isn’t exactly sitting well with you. You’re living like you’ve been handed a death sentence.”
“I am?”
She didn’t think he noticed.
“Yeah. I think you need to be okay, really authentically okay with not knowing, or you need to find out.”
So true. But which one should she choose? That’s the million-dollar question. She spends hours every day internally arguing the pros and cons of either decision. Ignorance is bliss. Knowledge is power. Living in the moment is enlightened. Planning for the future is responsible. Prepare for the worst. Hope for the best. By the end of each day, the tally is either even on both sides or too dizzying to count, and she collapses into bed, exhausted from the effort.
“If it’s negative, would you move to Portland with me?”
Katie considers his question as if she’s working through a profound and sacred riddle. It’s a strange shift in perspective, imagining a gene-negative outcome, free of Huntington’s, when so many synapses in her brain have been devoted to practicing the opposite. Then there’s her father’s voice, the one she’s always trusted and tried her best to obey, telling her to stay. Staying in Charlestown. The idea feels like a noose pulled tight around her neck. Staying. She’s shackled to a future as predetermined as her risk of HD.
She looks into Felix’s eyes and sees an invitation to freedom. Freedom from Huntington’s, freedom from the smothering limitations of this neighborhood, freedom to love and grow into who she really is. If she’s gene negative, this is her chance. Sorry, Dad.
“Yeah,” she says. “I would.”
A wide, immensely excited smile spreads across Felix’s face. She feels excited, too, realizing what she just admitted aloud, but the thrill is quickly seasoned with fear and guilt. She told her dad she wouldn’t go. Leaving would break her mother’s heart. JJ and Meghan are gene positive. Who does she think she is, imagining her life gene negative? Why should she be granted such a freedom? Felix hugs her, unaware of the obstinate torment within her, and holds on to her shoulders.
“That’s progress! Excellent. Okay, so now we know what’s holding you back. What about if it’s positive?”
Felix’s hands suddenly feel unbearably heavy on her shoulders, pinning her down.
“I dunno,” she says, knowing.
“Okay; we can cross that bridge if we find ourselves on it. How about just coming with me to Portland this week? Think of it as a vacation.”
Katie presses her temples with her fingers. She’s got a screaming headache. She could use a vacation, an escape. But she could go all the way to Fiji, stay in a five-star hotel situated on a private beach, and she’d still be thinking about HD. There is no escape.
“I really can’t.”
“Fine.”
Felix rises abruptly and returns to the bookcase.
“You still want to watch a movie?”
“I don’t care.”
Katie watches him packing another box, not looking at her. From what he’s told her about his job, she imagines Felix as a powerful and effective manager at the office. Her refusal to see things his way must be making him crazy. But he doesn’t look like a man throwing a tantrum, taking his ball and leaving the playground because he didn’t get what he wanted. His shoulders are turned and slumped, his eyes downcast. Her heart tenses, her blood pulsing hard against her temples as she understands his face. He looks scared. In all her self-centered fear, it never occurred to her that he could be scared, too.
“I’m sorry, Felix. Will you be going out there again before June? Maybe I could come next time.”
Felix shrugs. A taste of her own medicine.
“I’m just not ready to go next week. I didn’t find any subs.”
He says nothing.
“Go pick an apartment without me. I trust you. I’ll love anything you love.”
June first is a Monday. Katie imagines waking up that morning, her books still displayed in her bookcase, her clothes still hanging in the closet, her suitcases not packed, kissing Felix good-bye as he leaves for Logan Airport, staying behind and standing still out of fear of being HD positive. She loves him, and he deserves a life that isn’t cursed with Huntington’s. But what if she doesn’t move, she doesn’t open her own yoga studio, she breaks up with Felix, and it turns out she’s HD negative?
She will have given up everything for nothing.