by Mia Garcia
She brushed the tear from her cheek. “There’s a brochure too—between the pages—I even remember getting it. When we went to the doctor for a visit and they had these bright and shiny brochures out. Newly designed. All about testing your kids for Huntington’s. I don’t know if you remember that waiting room, but it was always too cold and it had these ugly brochures, but this one, you could tell it was new. I grabbed one. Stuffed it in my jacket and brought it home.”
Each time the wind kicked up, it sent a shiver down her back. “I remember that brochure was the scariest thing in my room. Like it already held the answer. I never read it, then you got sick again and we were all so busy. . . .”
They’d watched her mother like a hawk those days. Any change in temperature, prolonged cough was monitored.
“It was easier to stuff it away,” Lee said, remembering how she’d hidden the brochure between the pages of the notebook, knowing she would not look at it again. “It’s always easier to put things away, Mami. I’m really good at it.”
Now both sat at the bottom of her suitcase waiting for her to have the strength.
“Did it feel like your whole future disappeared when you found out? Dreams just snuffed out of existence? I know I haven’t gotten tested yet, but sometimes it feels like I already know. Deep down. That I can hear the clock ticking down the days.” She let out a shaky breath. “It’s pessimistic and I know you wouldn’t like it, but I have to think you felt it too.”
Her body felt heavy and she leaned a bit till her hands rested on the grass. “You won’t like this, you won’t, but I thought of not applying to college.” If she closed her eyes Lee could almost imagine her mother gasping at the thought. “I am, but it crosses my mind, what the point of it would be if . . .
“You should be here to yell at me about this. To tell me . . . tell me what to do.”
Lee took one deep breath and looked back to the tree, signaling her father and aunt. They would come join her and take one more moment together before leaving. “I’m sorry, Mami, this is not the happy update you deserve. I miss you, and I love you.”
THAT EVENING AUNTIE Rose and Lee’s father shared cooking duties. They opted to make some classic grilled cheese, because nothing warmed you in cold weather like grilled cheese. Lee watched them shuffle around each other in the kitchen, coating bread with slabs of butter then hearing it sizzle when it hit the pan.
“What are you putting on that grilled cheese?” Auntie Rose peered over her brother’s shoulder as he layered two different cheeses on the sizzling bread.
“Gruyere and another cheese I picked up at the market.”
“What’s wrong with American cheese?”
Her father sighed. “Nothing is wrong with it, I’m just trying something new. You’ll like it.”
“Hmm.” Auntie Rose went back to coating the slices of bread with butter. “Don’t ruin those grilled cheeses.”
“You’ll like it!” her father repeated, then turned to Lee. “Back me up here.”
Lee raised her hands. “Don’t bring me into this, I have no idea what this Gruyere grilled cheese is all about.”
“My own daughter.”
The cheese oozed out of the sandwiches as Lee, her father, Auntie Rose, and Cameron simultaneously reached for a triangle. Auntie Rose’s husband worked late, but still, they’d made enough to feed the neighborhood if they needed to.
“Well?” her father asked after they’d all taken a bite.
The cheese was still warm and gooey, complementing the crunch of the buttered bread.
“It’s delicious,” she said, taking another half.
“See?” he said, satisfied that he’d proved his point. “A friend at work is a bit of a foodie and gave me the recipe.”
“Lot of foodies in tech?” She imagined it was easy to get hungry if all you did was stare at a screen all day. Or at least that’s what she imagined they did all day.
Her father nodded. “We all have our hobbies.”
“Well, I approve,” her aunt said, reaching for another half of grilled cheese.
“Told you to trust me.”
Later, when everyone’s bellies were filled with cheese and bread, Lee snuck back to the room she was sharing with her dad and pulled out the notebook, the brochure still between its pages. It was dated now. The shiny graphics that made Lee grab it in the first place felt cheesy and childish. Turning it to the back she recognized the website at the bottom.
One her fingers had typed many times before, and she was surprised when her computer didn’t autocomplete the address.
Huntington’s Disease Society of America.
It was still as plain as she remembered it; the first thing to draw your eye was the giant What is Huntington’s Disease? right at the top before giving the visitor the lowdown:
Huntington’s disease (HD) is a fatal genetic disorder causing progressive deterioration of nerve cells in the brain.
Yep. Her stomach hurt.
It deteriorates a person’s health and has no cure.
No cure, so that was still the same then. Of course it was; if they’d discovered anything new since her mom died, her father would’ve told her. That, and it would be all over the news.
Lee hovered over the menu, seeing: “Genetic Testing and Family Planning.” With reluctance she clicked on it.
People at risk face a difficult choice. . . .
She scoffed. Difficult felt too light of a word.
There is no “right” answer.
Then how would she do this?
Did she really want to know? Part of her screamed YES, the other simply screamed, feeling like a deer caught in the headlights as a truck headed straight for her. She clicked on other pages that reminded her she had a fifty-fifty chance of inheriting HD, and if she did the following would await her:
Changes in coordination, involuntary movements, mood changes, irritability . . . and those were just the early stages. The stage where they still had hope, where they wondered if something was happening or if her mom was just getting clumsier, overworking herself, just having a bad day, week, month, year.
It was a thought that bothered Lee—did she accidentally drop that cup or was it something inside her? Was everything a sign, or was it nothing?
Then came the middle stage where movement becomes more of a problem. Where you add medication and go see specialists to help with involuntary movements and speech problems. Where you fight and fight and fight to keep going. Then there’s the late stage where her mind was still aware, where she smiled when Lee walked into the room. But where she couldn’t walk and couldn’t speak. Where they fought in different ways.
Her fingers hovered over the Where to Find Help page when she heard the creak of the stairs and her father calling for her.
She closed the laptop, placing her notebook on top as her father came in.
“Where did you go?” The bed creaked from his weight. He tossed his slippers by his open suitcase and stretched out on the twin mattress. It was comically small for him, but he might just pop the air mattress if he tried sleeping on it.
“Just . . .” Lee stared at the blank page. Was it waiting for an answer too? “Writing to Jessica about our lessons.”
Her father smiled. “You know I’m so happy about the Spanish lessons, right?”
Lee nodded, finding she couldn’t keep her father’s gaze.
“Did you tell your mother?”
“Oh.” Lee deflated for a moment. That would’ve at least been something positive. “I forgot.”
“Don’t worry, baby.” He stood, placing a hand on her chin, lifting it until their eyes met. “She knows.”
THAT NIGHT AS her father slept, Lee read over the information once again, not any closer to figuring anything out. She picked up the phone and texted Jess.
Lee: What if this resolution thing doesn’t work? Like . . . there’s a reason why I haven’t done it yet.
It was probably too late for Jess to respond, but within minutes
a message came in.
Jess: Tell me about it.
Lee: ?
Jess: Work it through with me. Word vomit it all out, it might help.
Lee didn’t know where to start, it all felt overwhelming and complicated. How could she write it all down for Jess to understand?
Jess: Let’s try something else. Close your eyes.
Lee: Uh.
What the what? The phone buzzed, it was Jess calling.
“Okay,” Jess said on the other side, “I realized if I asked you to close your eyes how would you ever read the messages? Now close your eyes.”
Lee sighed and complied. Even if Jess wasn’t in the same room, somehow she would know that Lee wasn’t following instructions. “Okay. Eyes closed.”
“Imagine a road.”
“Jess, what is this?” she whispered, not wanting to wake anyone up this late.
“I’m trying to see what you see. Now imagine a road.”
Lee pictured the road ahead of her covered in gravel and extending far beyond her.
“Done.”
“Now,” Jess continued, “picture a fork in the road. The fork is taking the test. The right side is you don’t have the genetic markers for HD, and the left is that you do. Now what do you see?”
“What do you mean?”
“Close your eyes and look to the right,” she said. “What do you see? What does the road look like? Is it long? Is it difficult?”
“It’s—” Lee pictured it, focusing on the right side of the fork. The road went as far as her eye could see. The grass around it was green and filled with flowers. There were things off in the distance, too far for Lee to see. “Long, green, like I could walk on it forever.”
“Okay.” Jess’s voice carried Lee. “Now turn to the left. What do you see?”
The image shifted to an uneven road that stopped abruptly at a dead end, nothing after it but darkness.
“Lee?” She heard Jess’s voice on the other side of the phone. “What do you see?”
“Nothing.” She swallowed. “There’s nothing there.”
Lee waited for Jess to say something, exhaling when she finally heard her voice on the other side. “That’s the problem, isn’t it? You aren’t going to take this test until you change the way you see the road.”
And how exactly was she supposed to do that? And how did you change a road that wasn’t wrong? Huntington’s was a dead end, and lying to herself wasn’t going to help that.
“Lee?”
“I’m gonna go. Just need to think about some stuff. Thank you for calling, though.”
When she hung up she drew out the roads in her notebook, extending the left one till it reached beyond the page, but it bothered her. That wasn’t real. She scratched out the image and turned the page and went back to the website, writing down the information on the Where to Find Help page. When she was done she turned the page and wrote: Getting Tested: Pros & Cons.
Below pros she wrote: Knowing.
Below cons she wrote: Knowing.
Ryan
“JIA BA BUE? Did you eat?” were the first words out of Ryan’s grandmother’s mouth when she came on-screen. No matter what time of day it was his Taiwanese grandmother always made sure to ask. She wore a bright-blue hat twice the size of her head, her favorite travel hat, key in keeping the sun from her eyes. She had two of them in the same color to be safe.
“Yes, I ate, Ama.” Ryan balanced his little sister, Katie, on his lap, who was ready with her portraits. She was the perfect distraction from his haircut that was not growing fast enough for his grandmother’s liking. He received weekly email forwards on how raw eggs or this vitamin or that extract was the key to hair growth and was he taking them? Even now he could see her eyes travel up to his scalp. He gave Katie a squeeze, and her five-year-old self jumped right in.
“Look, Ama!” She pushed a paper up against the screen until all you could see was splotches of color. “It’s you.”
“Is it?”
Katie nodded, and Ryan pulled the portrait back so she could see it more clearly.
“That’s nice. I look happy. How’s school?”
“Good!” Talking about her day was Katie’s favorite subject, though truthfully most things were. “I hit Michael Wallace in the knee on Tuesday because he pulled my hair.”
“Zuò de hăo.” His grandma nodded. “Always go for the knee like Ama taught you.”
“Ma!” Ryan’s dad popped in behind Ryan. “That’s not funny.”
“It wasn’t supposed to be.” She shrugged and smiled at Ryan. “When are you going to do another portrait of me? The old one needs a friend.”
His grandmother never failed to ask him this since he’d gifted her with a portrait several birthdays ago—it was the final push she’d needed to accept that her eldest grandson was going to be a painter, not a doctor. After that she’d insisted she always knew he would be a painter and that it wouldn’t be long before his art was famous all over the world like Cheng-po. Even when he thought he’d never draw again, his grandmother was right there to remind him: once an artist, always an artist. He wished he had her faith.
Ryan saw his dad slink off screen, returning to the chaos of the kitchen. Nice. He’d have to change the subject on his own. “How’s Florence?”
When Ryan’s grandfather had passed away four years ago, his grandmother decided she couldn’t bear to stay at home and mope. In addition to her biennial trips back to Taiwan, she now traveled in the winter or spring (whichever was cheapest) to someplace new for a month. So far she’d been to Thailand, New Zealand, and now Italy.
“I’ve had three gelati already! And joined a local protest for student rights!” His ama always reminded him you had to fight for the equality others took for granted. Growing up she’d been part of many civil rights marches and was the main reason Ryan knew anything about politics. She giggled, suddenly looking years younger. “I’m sending you some supplies I bought at a store called Zecchi. An art student recommended it. He was sketching at the Uffizi—not as good as you—and I just walked up to him and asked. Small store. Those are always best, don’t you think?”
“You don’t have to spend your world travels—”
She waved the complaint away. “I sent the package already, you’ll need them for your class.”
Of course she would know. “Dad! You told her?”
“Of course he told me,” she huffed. “You’re my grandson.” She smiled, leaning into the phone camera. “I told you it was still there.”
Ryan nodded, and his ama smiled back. “You’ll see,” she said. “You’ll see. Now thank your ama and put your father on.”
“Xièxie nĭ sòng wŏ zhè me bàng de lĭ wù, Ama,” he said. His grandmother nodded, happy he was practicing his Mandarin. Her own tongue was accustomed to slipping between Mandarin, Taiwanese, and English.
“Can I stay on?” Katie bounced up and down, waving at the screen. Ryan passed her to his father, who took his place in the chair.
“What are you making?” his grandmother asked.
“I’m going to try the flan,” his father replied.
“Again?” She looked disappointed at the strategy.
Ryan’s parents had been involved in a sort of food war for as long as Ryan could remember. Every two weeks one of them tackled a dish from the other’s family recipes. If they pulled it off they got bragging rights for two weeks. If they didn’t, well, his dad still brought up that time his mom screwed up youfan (sticky rice), even though she killed the pork dumplings weeks before.
This week it was his dad’s turn, and he made a second attempt at a flan made with evaporated milk—which should’ve been easy (his mom’s words, not his), but it didn’t set in the middle.
“Did you wiggle it?” he heard his grandmother say.
“Of course I did!”
“It looked funny,” Katie volunteered.
“It doesn’t have to look pretty,” his father said, hurt that the simple dish had bested
him.
“Tasted funny too.” Katie erupted in a heap of giggles.
“Katie,” he warned.
“Don’t listen to your dad, Katie. Always speak your mind.”
They kept chatting, his mom popping in to the conversation to throw some shade. Later they signed off as his grandmother was heading out for another walk and a gelato or two.
“You really going to try this flan thing again?” his mom smirked.
“I will not let the flan win, Sandra.”
His mom laughed, sitting to watch her husband tackle the recipe. It was an old recipe from her mother that she’d translated into English—most of it—but if he needed any help translating, that’s what trilingual children are for.
Ryan loved his parents during these times. Usually they were busy lawyers spitting out jargon over the dinner table, but on these nights they were just two silly, still very much in love people, having fun.
He didn’t notice he was pulling out his phone, but before he knew it he was looking through his old photos again. Ryan and Jason kissing at a party (Lee had snapped that one), making faces at the camera, Jason on his bed, asleep—he hadn’t noticed when Ryan had taken that one.
For a moment Ryan swore he could feel Jason’s hand in his, remember the first time he felt his fingers curl around his. Jason had looked at Ryan like it was the simplest thing in the world to hold his hand, but for Ryan it felt like the world was going to burst. He didn’t know that feeling would echo again when they shared their first kiss just moments later.
“What?” Jason had said, the goofiest grin on his face as Ryan had stared at their hands intertwined.
Ryan shook his head, a bit embarrassed. He should be playing it cool, shouldn’t he? But he couldn’t, not when Jason’s hand felt so good in his. “Nothing. Just . . . this feels good.”