The Biofuel project in Boston lasted three years. Felix thinks the rollout in Portland would take roughly the same amount of time.
“I dunno, at least a couple of years.”
“So what’s holding you back?”
Her eyebrows lift as she shoots him an exasperated look, a gesture stolen from her mom’s playbook. Don’t play dumb with me, young man.
“Your unknown gene status,” he says.
She nods.
“Okay, so what happens if you’re gene negative. Would you go?”
She thinks. It wouldn’t have to be forever. If her mom and dad need her help, she can adjust her life when that happens. If she doesn’t have HD, she has no reason not to go. She loves Felix. She can’t bear the thought of losing him.
“Yeah, I think I would.”
A nervous thrill rushes through her after hearing herself voice her truth aloud, and a stupid smile spreads across her face.
“Okay, and now the other possibility. What if you find out you’re gene positive?”
And just like that, her smile retreats. The nervous thrill is shuttled into memory.
“I dunno. I feel like not going and breaking up with him would be the right thing to do.”
Eric nods.
“So you think that’s what I should do?”
“No, no, I’m just listening, understanding your thoughts.”
“What would you do?” asks Katie.
“I can’t answer that for you. I’m not in your shoes.”
Katie looks down at her feet. She’s wearing black Toms.
“Plus, I don’t think Felix would want to live with me,” says Eric.
“Very funny.”
“You don’t have to be a martyr, Katie. If you’re gene positive, you could have fifteen to twenty years with no symptoms. That’s a long time. A lot of things can change in that amount of time. There’s plenty of real hope in the research being done. We could have a really effective treatment or cure by then.”
Fifteen to twenty years. Enough time to hope for JJ and for her, Meghan, and Patrick if they’re gene positive. Too late for her dad.
“It’d be a shame to end an important relationship, to cut a man you love out of your life because of a disease that, if you’re going to get it, won’t even interfere with your life for maybe another decade or more. Maybe there’s a cure in ten years, and HD will never interfere with anything. And then you gave up Felix and Portland for nothing.”
“Sounds like you’re trying to convince me to get the test.”
“No, I didn’t mean for you to hear that. I’m not here to influence your decision either way. I’m here to help you process the potential impact of every possible outcome. I’m just trying to paint a picture for you, to show you that your life doesn’t have to stop or go off the rails if you take the test and find out it’s positive.”
“Yeah, but it still doesn’t seem fair to Felix,” says her Irish Catholic guilt.
“Not to be a downer here, Katie, but you’re really young. You’re only twenty-one. I know you guys are in love, but chances are, you two don’t end up happily ever after, together forever. Chances are, you’ll love a few more guys before it all works out. And none of that has anything to do with HD. It’s just life.”
She’s not realistically thinking about marrying Felix, but, to be honest, in the back of her mind, just for fun, she’s trying on gowns. And Felix would look so totally hot in a black tux. It could happen. Her mom was married with three kids when she was Katie’s age. She wonders what her chances are of ending up with Felix. Probably not as likely as her chances of getting Huntington’s.
“Have you been in love before?” asks Katie.
“Yeah,” says Eric, hesitating, as if he has more to say but is unsure of whether it’s appropriate to share it. “I’ve loved three women. Really loved them, but none of them lasted. Relationships are hard. At least they are for me.”
“This is so weird. I mean, I don’t really know you, and we’re talking about stuff I don’t talk about with anyone.”
“That’s my job.”
“Oh,” says Katie, visibly deflated.
“I didn’t mean that it’s not personal. We’re sharing really intimate stuff here. I get what you mean. You can’t really make this kind of decision without rolling up your sleeves, stripping off the armor, and going in deep.”
“Which decision? Moving to Portland with Felix or taking the test?”
“Both.”
Katie nods. Eric waits. The air between them swells with a sticky silence.
“One thing we didn’t talk about last time when we went over the genetics that you should know. Remember we talked about the expanded HD gene. Thirty-five or fewer CAG repeats is a negative result and means you won’t get HD. Forty or more CAG repeats means you will definitely get HD. Well, the test isn’t completely black-and-white. There’s a gray area.”
Eric pauses. Katie’s stomach tightens, and she braces herself. She has no idea what he’s about to say, but her intuition is sounding every alarm.
“If you have thirty-six to thirty-nine repeats, it’s a result I can’t interpret. This is called a reduced penetrance allele. This is the gray area. With thirty-eight or thirty-nine, you probably have a ninety percent chance of getting HD in your lifetime if you live long enough. It’s probably around seventy-five percent if you have thirty-seven CAG repeats and fifty percent for thirty-six repeats, but none of this is exact. We can’t really say for sure when the number is between thirty-six and thirty-nine.”
He waits, exploring Katie’s face for how this new information is landing in her. It landed like a fuckin’ drone attack. She never saw it coming. It was a big fat lie of omission. A bait and switch. She’s so pissed, she can’t even find the words. She takes a deep breath. There they are.
“So let me get this straight. I could take the test and get an answer that’s not an answer.”
“Unfortunately, yes.”
She can’t believe it. This can’t be right.
“So I could go through all this bullshit, decide I want to know, and then if the result is gray, I’ll essentially still be at fifty-fifty.”
“Yes.”
“Well, that fuckin’ sucks.”
“It does. But it’s the best we have.”
“You should’ve told me on our first date.”
She hears what she just said. She’s too pissed to blush.
“I mean appointment.”
“I know. I’m sorry. Sometimes, I find it’s too much information to lay out on the first visit. Has any of this helped?” asks Eric.
It did right up until everything went gray.
“I dunno.”
“You don’t have to decide anything today. But if you want, we can walk down to the lab, have your blood drawn, and sent for the test.”
“And then I’ll find out if my CAG count is black, white, or gray.”
“Yes. And in four weeks, if you still want to know, you can come back, and I’ll tell you your results. Here’s how that visit will go down if you decide to go through with it. You and the person you bring to support you will be called in from the waiting room. I won’t know your results before you come in, so whatever my face is doing when you first see me means nothing. If I smile or look distracted or whatever, it doesn’t mean anything. I’ll ask you whether you still want to know. If you say yes, then I’ll open your envelope, read your results, and then tell you the news.”
She tries to picture them in this same office in four weeks. Eric has a white envelope in his hand. He opens it. And the winner is . . .
“So what do you want to do? Do you want me to escort you to the lab for a blood draw?”
Truth or dare, little girl. What’ll it be?
“Hope is the thing with feathers
That per
ches in the soul
And sings the tune without the words
And never stops at all.”
“Fuck it. Yeah, let’s do it.”
CHAPTER 19
Katie is heaving deep, wild sobs as she scribbles over another word with a black Sharpie. She’s frantic yet determined to be thorough, to destroy every letter. She pushes hard against the wall, stabbing at the words as if she were holding a knife instead of a pen, wanting to kill them all, and she’s frustrated with the impotence of the soft, fine tip.
She presses harder, as hard as she can muscle, ignoring the burning ache in her right shoulder, annihilating every lying word. She draws over each letter until it’s unrecognizable, eliminating the evidence of what she once believed in. She believes in nothing now. Her bedroom is chilly, but she’s a furnace fueled by anguish, hot from feverish exertion and the enormity of the job, the front of her shirt damp with sweat and tears.
Finally, she’s inked over every last letter. No more quotes. No more false hope. She steps back. Her bedroom walls are covered in black, jagged, outraged explosions, like an artist’s abstract interpretation of war. Her walls are at war. A better reflection of her reality, she thinks.
She catches her reflection in the mirror over her dresser. Her cheeks are stained with mascara, twin black streaks running the length of her face. An impulse seizes her, impossible to resist, and she takes the Sharpie to her skin, tracing the mascara trails, running the indelible black marker from eye to jawbone, up and down, up and down. She studies herself in the mirror without expression.
With the marker still in her hand, she scans the rest of her room to see whether she’s done. She finds one more thing. She stands on her bed at the headboard and attacks a peaceful meadow of white space, a stretch of wall yet unaffected by the black war. She writes the letters CAG over and over in a horizontal line until there are forty-seven. Forty-seven CAGs.
The number of CAG repeats dancing inside the mind of her only sister.
SHE COULDN’T SLEEP in her room after that. She’s been staying with Felix for the past three days. She couldn’t face what she’d done or even Meghan just yet. To say that Felix is worried is an understatement. He actually took two sick days off from work to stay with her. She sank into his bed and didn’t move for much of anything. He brought her food, which she ate, but only because he insisted. He wiped a facecloth soaked in rubbing alcohol on her cheeks until her skin was raw and finally clean. She slept and cried and stared at his walls.
Innocent, neutral, gray-green walls. He has a giclée print of Rockport Harbor, a cheerful image in bright Crayola eight-pack colors. Red, yellow, and orange buoys. A green boat. A blue sky. There’s the photograph Felix took of the USS Constitution at sunrise, the historic warship in the foreground, the modern city in the background, black and silver lines against a blushing sky. Finally, there’s a black-and-white woodblock print of the New York City skyline, Felix’s hometown, a place Katie has never been. His walls comforted her, providing refuge from the walls of her bedroom, of blotted-out lies and a deadly DNA recipe, from the invisible walls surrounding and closing in on her and her family, threatening to crush them all.
She’s living in a horror movie, and this hideous monster is on a rampage, tearing through the O’Brien family tree, chopping off branches and tossing them into the chipper. And the beast won’t be satisfied until there’s nothing left but a stump, the only evidence of their existence to be traced by her mother’s grief-stricken finger along the concentric rings.
First her grandmother and her dad. Then JJ. Now Meghan. Meghan’s going to get HD. She imagines Meghan with chorea like her dad has, unable to dance, and it shreds Katie’s insides. She closes her eyes, but she can still picture Meghan with chorea, and Katie wishes her imagination would go blind. Meghan’s going to die with HD. Katie can’t imagine her life without Meghan. She can’t. She won’t.
For three days, she found refuge in Felix’s bed, snuggled under a heavy blanket of guilt and shame. She’s been treating time like an easy, abundant commodity, something she could cavalierly afford to waste. Underneath Katie’s petty jealousy of her older sister, there’s an honest admiration and respect she’s been aching but unable to express. Behind the constant comparison and competition, there’s the memory of friendship and sisterhood she misses. Outwardly, Katie’s shown Meghan mostly hostility and resentment for several years. But inside, beneath the armor that has so effectively kept them apart, there’s love.
In truth, Katie has longed to be close with Meghan for years, but taking responsibility for her role in their rift and raising her hand to go first felt too daunting. She’s such a coward. Instead, she’s procrastinated, content to stay in the familiar habit of envying Meghan, believing her mind’s invented story of the sister who got everything and the sister who got nothing, playing the role of Meghan’s opposite and adversary, the victim. She assumed she had forever to fix things between them. And now, like her dad and JJ, Meghan is HD positive.
It’s time to let this shit go.
Today, Katie rejoined the world. She taught her nine thirty Vinyasa class and then took Andrea’s Hour of Power at noon. It felt good to move, to go through the motions of a regular day. Hearing the familiar cues and moving through the asanas began stitching her back together.
She’s almost home now, climbing the stairwell to her apartment. It smells of fresh paint. The door to her bedroom is partly open. She sees a paint-splattered drop cloth on the floor through the crack.
She pushes the door open and stops on the threshold, stunned. Meghan is standing there, holding an uncapped Sharpie. She turns to face Katie. She’s smiling.
The black explosions and the forty-seven CAGs are gone. Her room has been repainted a robin’s-egg blue, Katie’s favorite color. To her amazement, every quote is back on the wall in roughly the same location where it had been, now in Meghan’s handwriting.
“Don’t be mad,” says Meghan.
“How?” asks Katie. “You have them all. You put everything back.”
“I sometimes sit on your bed when you’re not home and read your walls. I have for a long time, even before all this. The quotes help me, and I really need them now.” She pauses. “I think you do, too. Please don’t give up on me.”
Meghan walks over to her sister and folds Katie into her arms. Katie hugs her back, overwhelmed with relief, gratitude, and love. Their estranged bodies fit together easily, their embrace a favorite memory. Katie steps back and wipes her eyes.
“I won’t. I promise,” says Katie. “I miss you, Meg.”
“I miss you, too.”
“I didn’t know you valued or even noticed any of this. Actually, I thought you thought my yoga quotes were stupid.”
“Where did you ever get that?”
“I dunno. You guys always tease me about the juice cleanses and the chanting and the Sanskrit words.”
“It’s mostly JJ and Patrick who tease you. We don’t mean anything by it.”
“Yeah, but you’ve never even been to one of my classes.”
“I didn’t think you wanted me to. You’ve never asked me to come, and I assumed that meant you didn’t want me there.”
Katie’s been waiting for Meghan to attend one of her classes, and when this never happened, she assumed Meg thought yoga was beneath her, that Katie was beneath her. And all this time, Meg’s been waiting for an invitation.
“I definitely want you there,” says Katie.
“Then I want to go.”
“It’s not that big a deal. My classes aren’t exactly Swan Lake.”
“It’s a huge deal. You’re a yoga teacher. That’s so cool. I’d love to take one of your classes. But the only pose I know is Dancer’s. I’ll probably make a fool of myself.”
Katie shakes her head, smiling. Meghan’s never made a fool of herself in her life. Katie thinks about HD, about her dad stumb
ling, falling, grimacing, dropping things, looking like a fool to anyone who doesn’t know what he has. Meghan’s future.
“I’m so sorry, Meg.”
“It’s okay. It’s not like I’m dying tomorrow.”
“No. I know. I meant, I’m sorry for being such a jerk to you for so long.”
“Oh. Me, too.”
“I wish I didn’t waste so much time.”
With the Sharpie still in her hand, Meghan walks back over to the wall and finishes the quote she was replacing when Katie walked in.
“Being deeply loved by someone gives you strength, while loving someone deeply gives you courage.”
—Lao Tzu
“Let’s start from today. Okay?”
Katie nods. “Wait, what’s this?” she asks, pointing.
“Stay in the Fight.”
—Boston Police Department
“That’s from Dad,” says Meghan. “There are a couple more additions.”
Katie’s eyes travel the perimeter of her room until they land on the wall just over her mirror. She laughs, and Meghan laughs readily in response, knowing what Katie is reading.
“These demons don’t know who they’re fucking with.”
—Patrick O’Brien
And then there is her mom. The lengthiest quote in the room, written in cursive above her headboard where the deadly chain of CAGs had been three days ago. The prayer of St. Francis.
Lord, make me an instrument of Thy peace;
Where there is hatred, let me sow love;
Where there is injury, pardon;
Where there is error, truth;
Where there is doubt, faith;
Where there is despair, hope;
Where there is darkness, light;
And where there is sadness, joy.
O Divine Master, Grant that I may not so much seek
To be consoled as to console;
To be understood as to understand;
To be loved as to love.
For it is in giving that we receive;