Celeste takes us to a model bedroom. They call it a “studio apartment,” but that’s a joke because it doesn’t have a kitchen or a living room or a dining room. It’s a room with a bed at one end and a couch and two armchairs at the other end. There’s a matching wardrobe and bureau, from IKEA I think, and a flat-screen television (with cable, Celeste notes) mounted to the wall.
“Most of our residents make their apartments very homey. Lots of artwork on the walls, family pictures. You can bring a quilt from home if you’d like,” Celeste says, smiling gently at Mom. “We encourage you to do whatever you want to make this place feel as much like your own as possible. We know it’s only the second best thing,” she adds, glancing at me, “but we hope it can be a close second.”
“Nice,” Mom says, surveying the room, the way she used to when we’d go to open houses on the weekends. Even though we weren’t looking to move, Mom would go online, find some open houses nearby, and take me with her to check them out. (“It’s like a free pass to snoop in someone else’s house, Rose. Think of Rear Window.”) As an architect, she always loved looking at other people’s homes, and she passed her curiosity along to me through those visits to grand old mansard Victorians and pastel-painted Colonials all over Cambridge. Of course, the real Mom would not have found this place up to her standards. It’s basically a white box with some furniture—none of the character Mom loves, or used to love, anyway. No crown molding, no quirky nooks or built-in shelves or anything, and the floor is clearly laminate, not real wood.
“Chhheck out the view,” Mom says to me over her shoulder. I push her chair over to the window and we survey the backyard gardens.
“This is just a model unit, Mom. Your view might not be this nice.” Dad shoots me a look, but I’m not saying it to be mean. It just seems like they shouldn’t make the model unit have the nicest view in the whole place. It’s manipulative.
“Can I request a room with a vvview?” Mom asks Celeste.
“You can. We’ll do our best to accommodate your preferences. Of course it depends what’s available when you … uh…” She trails off. It’s the first time I’ve seen Celeste search for the right words. Like she hasn’t rehearsed this part, or she’s forgotten her lines. “Whenever you make the decision. To transition.”
On a table by the window, there’s a potted plant with purple flowers. I reach out and run one of the petals between my fingers. Fake.
“I’ll leave you folks here for a few minutes,” Celeste says. “I’ll just go get some paperwork, and I’ll be back in a few.”
Dad nods at her. After she’s gone, the three of us look around the room, numbed. Stunned, maybe, I’m not sure. We’ve certainly gone silent.
After a moment, I clear my throat. “I have to tell you guys something.” My palms are sweaty, and a wave of nausea sends a tingling sensation through my spine and gut. “Well, I already told Mom this.”
Dad looks confused. He turns to Mom, alarmed. So she kept my secret.
“I took the HD test. More than a month ago.”
“You did what?” Dad’s voice is low and angry, or maybe just scared.
“There’s no point in fighting about this again, Dad. It’s done. I’ve done it, and I made an appointment to get my results. And I’m hoping you’ll come with me.”
“Ro—come on. I know you think that this is the right thing, but … are you sure you want to do this?” he asks. “You could go off to Cunningham, enjoy yourself, not worry about it for a few years.”
“I’m sorry, Dad. But I can’t not do this. I need to follow through.”
Of course, since I took the test, I’ve managed to lose the person who was actually willing to be with me through this whole thing. Or maybe “lose” is the wrong word—throw away. I’ve called him four times since our fight—and I’ve lost count of the unanswered texts. I’ve steeled myself to the fact that he meant what he said: he’s done.
Dad shakes his head, but doesn’t say anything. I forget, sometimes, that these results dictate my father’s future as well. He’ll watch me suffer, after he’s watched her suffer. A car accident that killed all of us probably wouldn’t be the worst thing that could happen.
“You told your mother about this, but not me?”
I shrug. I wish I could apologize, but I’m not sure I know how. Dad stares at the floor for a minute, and I wonder if he’s going to yell, or cry, or tell me I’ve betrayed his trust. But then he nods, like he understands.
“Chhhild,” Mom says suddenly, opening her mouth wide to get the word out, like she does now. “If I had known about thhhis”—she gestures around the room—“I might not have had you.”
Dad gets up, his eyes full, and goes into the hallway. It’s just Mom and me, staring at each other over the fake purple plant. Mom almost never talks about her diagnosis. In fact half the time she seems less aware of her symptoms than we are. “Unawareness” is a symptom itself, Dr. Howard has told us. Mom never talks about her feelings about living with the disease, about deteriorating, about dying. But as soon as I think how strange that is, that she never talks about it, I realize that I never ask her. Maybe that’s why her decision to make these plans was so surprising to me. I’ve stopped thinking of her as a person with feelings as complicated as my own.
It occurs to me, only now, that when Dad said that Mom wanted to take control of her life by choosing McClaren House, it was the same as me choosing to take this test. When there’s so much out of our control, we deserve to make whatever choices we can hold on to.
“This disease is ugly,” Mom says, her tongue protruding and then disappearing back into her mouth as she forms the words. “But it isn’t everything.”
Thirty
The next morning, after several minutes of speed-pacing around my bedroom, I call Caleb again. This morning is the last time I will be this version of myself. By this afternoon, I’ll be a person who knows my HD status. This version of me will never talk to Caleb again, unless I do it now.
His phone rings a few times, then goes to his deadpanned voice mail that I’m now getting used to hearing, the one that tells me he regrets falling in love with me: “Greetings. You have reached the answering service of Caleb G. Franklin. Please leave a message after the beep and I will return your call as soon as humanly possible.”
I’ve never asked him what the G stands for in Caleb G. Franklin. Suddenly that seems like a weird thing not to know about him, and I need to know right away. I call back two more times, but he doesn’t answer.
* * *
Dad pulls into the underground parking lot and finds a spot near the elevator bank. We sit in silence in the car, the engine still humming. Inside the clinic, there is a person who knows my fate.
“Ready?” Dad asks, turning to me. “This is what you want, right?”
I nod. It is what I want. I think. Of course, I won’t completely know if it’s what I want until I know the outcome of the test. But by then it’ll be too late to change my mind, so I just have to trust that this is the right thing to do.
As we ride up to the fifth floor on the elevator, I think about the return trip. I visualize the concrete barricades between the rows of parked SUVs, the low-hanging ceiling, the parking attendant collecting tickets, validated in the hospital lobby for everyone lucky enough to leave alive. The parking lot smells of gas and hot air, I remember that. It will smell the same when I leave. Everything will be the same, but nothing will be the same.
The receptionist smiles at me, a closed-mouth sympathetic smile, as Dad and I take seats in the waiting room.
“I’ll let Roxanna know you’re here,” she says. It’s Roxanna who will deliver the news. I’ve known this all along, since I met Roxanna, but it’s still chilling. Roxanna knows. She already knows. The paper is in front of her, and all she has to do is open her mouth and tell me.
We wait for two minutes, or maybe ten, I can’t tell. There’s a light buzzing in my ears, like the sound of everything around me is heightened a little b
it. I sip water from a thin paper cup, but my mouth doesn’t absorb any of the moisture.
And then she comes out, looking just like herself: it’s business as usual in the field of telling people bad news.
“Rose, are you ready to chat?”
Chatting. That’s what this is, apparently. I turn to Dad. He just stares back at me, like he’s trying to look straight through my eyes and see my brain.
We follow Roxanna into her office.
“Please, sit down.” She gestures toward the sofa and sits herself in an armchair opposite. If it were good news, wouldn’t she just tell me?
She looks me in the eye—maybe it is good news. Would she look at me, if she were about to deliver me a death sentence? I stare at the same old sand dunes painting over her head. You know how they say your life flashes before your eyes right before you die? I think I’m having a moment like that, except it’s not my whole life; it’s just the piece that’s happened since the last time I sat in this office and was subjected to the crappy painting on Roxanna’s wall and her earnest head-cocking.
I didn’t sleep at all last night, which I guess isn’t a surprise. I just lay there on my bed, staring at the ceiling where the constellations once glowed. Constellations my mother wouldn’t have made, for a daughter she wouldn’t have had, if she’d known she was going to get sick. Going through the motions of getting dressed and eating breakfast this morning, in a house my mother will one day soon not live in, I felt like myself inside out and maybe having just gone through the spin cycle on the washing machine. If only they’d invent a washing machine for cleaning out genetic errors. Wouldn’t that be a clever way to resolve this situation. Although, on second thought, I suppose that’s what the eugenicists thought they were doing, and look how that turned out. So never mind.
All of this goes through my mind in an instant, staring at Roxanna’s wall. I look directly at her now. She has freckles spread across the bridge of her nose and a large, hard-to-ignore mole under her left eye. I wonder if it’s annoying in her peripheral vision, or if she’s so used to it she can’t tell it’s there anymore. She cocks her head to the left. Then she squints at me, purses her lips, and cocks it to the right. It must be bad news.
“Rose, remember that whatever your results are, they won’t change anything about the way you live your life right now,” Roxanna says. “You aren’t sick today. You won’t be sick tomorrow. You can go to college. You can work. You can have a family. All of that. It doesn’t change.”
I can love the journey. That’s what my mother would say.
“Even if you do test positive, you have years left to live normally,” Roxanna adds.
She’s wrong. I’ll never live normally. But normal-ish, at least. I hear Jay, suddenly, echoing in the back of my mind. “You know what they say about rules.” I didn’t know what he meant the first time, but now that I hear it again in my head, I understand.
As Roxanna opens her mouth, I put up a hand.
“Stop.” I take a breath. “Dad, I want to go.”
“What?” He looks confused.
“Let’s go.”
“But, Ro—you were so sure—don’t you want to—”
I shake my head. “No,” I say. “No. I’ll wait.”
I’ll wait.
SUMMER
Rule #4: Rules are meant to be broken.
Thirty-one
I get an iced tea and wait nervously for Caleb on the rickety yellow bench in front of the bookstore in Porter Square. It’s one of those perfectly bright, dry, sunny days, and it feels like every resident of Cambridge is out and about, buzzing around, wearing the wrinkled short sleeves they’ve unearthed from the bottoms of their drawers.
Seeing him makes me want to melt. It’s been almost a month. After the first week, when I called him and got his voice mail so many times in a row, I forced myself to stop trying.
Now graduation is just a few weeks away. My mother has lashed out at me three times since I last saw Caleb. I skipped the prom last Friday, even though Lena tried to force me to go—which was fine, really, because a night in a crowded, sweat-filled hotel ballroom, in a fancy dress and high heels, isn’t exactly a must-have life experience for me. But as much as I tried to ignore the thought as it lurked around in my brain, it did occur to me that Caleb would’ve made me go. And that he probably would’ve made it fun.
So I called him again, and this time he answered, and agreed to see me. Now, here he is, just like normal, in a red T-shirt and jeans. He has new glasses and his hair looks recently buzzed, but other than that, he’s the same.
“I’m sorry,” I blurt out, barely waiting for him to sit down. “I’m sorry I was a jackass. All you wanted to do was be there for me, and I’m just incapable of accepting a good thing. You were being great, and I was awful.”
“You weren’t that awful,” he says, smirking a little. “Look, I’m sorry too. I’m sorry I left like that and didn’t call you back. My mom says I was being selfish, that I was pushing you too hard, and she’s right.”
“Your mom said that?”
He nods. “I get that you need to make the decision that’s right for you, whatever that is.” I think he’s rehearsed this. “And it’s not easy. I’m sorry.” He looks at me now like he’s going to cry.
I inhale as hard as I can. I have to tell him what I’ve come here to tell him. “Can we have us back now? Please?” I ask.
Caleb puts a hand on my knee. “HD, I’ve done a lot of thinking about this, and I’ve come to a conclusion.”
“What conclusion?”
“That I do not care.”
“You don’t care?” My voice comes out sounding small, and it feels like my heart has traveled to my stomach. Or my stomach’s in my throat, or something. Whatever it is, something is mixed up with my insides.
“Nope. I don’t care if you’re sick, or healthy, or want to ride trains around the world forever, or whatever other ridiculous things you have planned. I just want to be your person, for now, and I would like you to reciprocate. So yes, HD. I would like to have us back. If you would.”
His forgiveness unravels me. He cups one hand around the base of my neck, and wipes a tear off my cheek with the other. Then I have to say the other thing, without thinking too much about it. “I went to see Roxanna. For my test results.”
Caleb sits upright on the bench. “You what? What happened?”
Quickly, I tell him about Roxanna, and the waiting room, and walking out without my results. When I come to the end, he looks as confused as my dad did in the moment.
“So in the end, you went with—nothing? Your decision is indecision?” A deep rut forms between his eyebrows.
“It’s not indecision.” I chew on my straw and try to find the rights words to explain what’s in my head. Or my heart. I can’t tell which is which anymore. “This is my decision. I can’t know yet. I need to try to be normal for a little while. Or at least normal-ish.”
“Normal-ish?”
“What?” I say. “It’s a thing.”
“Normal-ish,” he repeats, nodding slowly. “Okay. We can live with that.”
We.
“And here’s the thing,” I say.
I’ve broken all my rules already. There’s no point in trying not to, not anymore.
“I love you. I know it took me a while and I know I’m a pain in the ass but … that’s the thing. I love you. Okay? Happy now?”
Caleb gives me a wry half smile, the look he always has when he already knows something and I’m reporting the realization as if it’s breaking news.
“What?” I ask. “Aren’t you going to say anything?”
He shakes his head. “You are truly one in seven billion, HD.”
“So, is that … okay? That thing I just said?”
“It is okay.”
After I let the relief flush through me, I lean up toward him and kiss him, hard. I’ve never done that before in public. “Can I ask you something?” I say, when I pull my face away a
nd he looks at me, bemused.
“Yes.”
“What does the G stand for? In your name?”
“Giles. For my grandfather.”
Of course. Caleb Giles Franklin, named for his grandfather the artist, who gave him a sketchbook and the gene for art.
“One more question,” I say. “Will you still watch paint dry with me?”
He laughs, big and raucous, his shoulders bouncing up and down, like I haven’t seen in too long. I’ve missed that laugh.
“I will still watch paint dry with you, HD.” He wraps an arm around my shoulder and pulls me in close. “Maybe we could make it the quick-dry kind, though.”
I punch him in the arm and then burrow myself in his chest, where I think I’ll stay for a while. Or at least for now.
Acknowledgments
First, a disclaimer: This book is just one imagined story—it isn’t intended to be a comprehensive account of Huntington’s disease or the experiences of families coping with it. To explore these topics in greater depth, the Huntington’s Disease Society of America (www.hdsa.org) and the Huntington’s Disease Youth Organization (www.hdyo.org) are great places to start.
That said, in writing Rose’s story, I relied heavily on those who know much more about Huntington’s than I do. Nancy Downing, PhD/RN, generously answered my questions and shared excellent resources. Masha Gessen’s brilliant book Blood Matters, as well as the research and writings of Alice Wexler, Nancy Wexler, Amy Harmon, Gina Kolata, and Kevin Baker, all provided invaluable guidance.
Rules for 50/50 Chances Page 26