Authors: Marie Meyer
A genetic dominant disorder that gradually kills nerve cells in the brain. Individuals with Huntington’s experienced loss of coordination, uncontrolled muscle spasms, declined cognitive function, impaired walking and speech…the list went on and on, until eventually, you died.
All I needed was one dominant allele, and I could kiss my future good-bye. By the time I finished my fellowship, I could be presenting with early symptoms. Cardiac surgeons needed steady hands. I stared at my hands…hands I wouldn’t have control over. I stared at Gio. He couldn’t be much over fifty and he was already confined to a wheelchair.
Where does that leave me?
Goose bumps rose on my skin, along with a thin layer of sweat. I shivered. Swallowing, my throat felt like sandpaper. It closed off, refusing to allow any more oxygen into my lungs. The walls closed in.
When my dad walked out on me fifteen years ago, he changed the course of my life…how I viewed life and love. Now, with a four-word sentence, he derailed my life’s goals, everything I’d worked so hard for.
By nature I wasn’t a gambler. I didn’t like taking chances. Too many horrible things happened in my life as a result of having no control, and now, here I was spinning the roulette wheel. Did I have the gene or not? A fifty-fifty chance stood between life and a horrible death.
“I think you should get tested, Sophia. That way you can know for sure,” Gio said casually, like he hadn’t just shot my future to hell. “I can give you the number of a genetic counselor and I have the finest doctor money can buy.”
Genetic counselor? Doctor? Tested?
The train cars kept piling up, slamming into one another. I had to get out of this house. I needed air.
“I have to go.” I stood abruptly, shouldered my purse, and stalked to the door.
“Sophia,” Gio called after me. “Wait!” he shouted.
The second I was out of the library, the air was lighter, and I could breathe a little easier.
“Sophia?” A female voice sounded from behind me. “Are you alright?” Lydia, the woman my dad was living with, came up and put her hand on my back. “You don’t look well. Can I get you some water?”
I shook my head. “No. I just need to leave. I’ve got to go.” I shrugged her hand off my back and worked my way down the hall, toward the front door.
Without glancing back, I ran down the hall, pulled the door open, and stepped into the blazing sunshine. The illusion of a happy summer day was on full display. Trees swayed in the breeze, a couple of bees buzzed from rose to rose, and the sound of children’s laughter floated from the houses down the street. But despite my best effort to focus on those joyful sounds, I couldn’t escape the screeching brakes of my train-wrecked future.
I
slammed the car door shut and gripped the steering wheel hard, before I let my head fall there as well. My lungs heaved and my throat burned like it’d been rubbed raw with sandpaper.
The air around me grew hot quickly, but my shock-addled system wouldn’t allow me to move. My fight-or-flight response lasted long enough to get me out of the house, but now I was frozen, despite the rising temperatures.
Still slumped over the steering wheel, I felt a drop of sweat roll down the middle of my back. I thought about opening the window when I heard a tap on the glass.
A muffled voice called my name. “Sophia.”
My head weighed a thousand pounds. Slowly, I lifted my forehead, my eyes focusing on the person standing outside my car.
Lydia. What did she want?
She tapped on the window again. “Can you roll down the window?”
I started the car. A blast of torrid heat blew from the vents. I reached for the thermostat and turned down the blower before depressing the window control.
With a gentle hum, the window retreated into the door. Lydia smiled and passed the envelope to me. “You forgot this.”
My fingers wrapped around the paper. “Thanks,” I replied hoarsely. I met Lydia’s kind eyes. She was very pretty…and young. I’d guess late twenties, not much older than me. I found it odd she was with Gio and not someone more…vibrant, youthful.
Someone who wasn’t dying of a genetic disorder that could be passed on to her future offspring.
“Why are you with him?” I asked. It wasn’t any of my business, but I was beyond caring about appropriate lines of questioning.
Lydia tilted her head and her eyebrows pulled in when she squinted. “What do you mean?”
Brushing my hair behind my ears, I sat up straighter. “Why are you with Gio?” I said louder. Did she need a more detailed question?
Why are you sleeping with a man who’s dying?
Then the lightbulb came on. Understanding dawned across her face and she shook her head, smiling. “Oh no.” She waved her hands, as if to clear away my awkward question. “I’m your father’s nurse. I do live here, but there is no romantic involvement between Mr. Belmonte and me.” She paused for a moment, then gave an unnerved chuckle.
“Oh.” I glanced at the envelope, tossing it onto the passenger seat before looking back at Lydia. “I’m sorry, I jumped to conclusions.”
She pressed her lips into a smile and waved again. “No apology needed.”
“I should go,” I said, suddenly very tired. I’d survived the earlier train wreck, but now I was spent. I needed to sleep for a day…or ten.
Pressing on the window button, the glass moved back into position. “Sophia,” Lydia added before the window was completely up.
“Yeah?”
“This isn’t my place, but I spend a lot of time with your dad. I’ve heard so many stories. I don’t know if he told you, but the reason he left was so you and your mother wouldn’t see him like that.” She nodded in the direction of the house.
I looked back at the house. Minutes ticked by before I turned back to where Lydia stood. “Cowardly. If you ask me.”
Lydia opened her mouth to say something else—probably to defend my father’s actions—but I finished putting up the window, sufficiently ending our conversation. I was through with excuses.
* * *
I drove without a destination in mind, my car leading me to Wash U’s campus. School had always been a safe haven. When I quit playing soccer, getting lost in schoolwork centered me and brought me peace. In a week and a half, I’d return to my classroom sanctuaries. Lord knew I needed the distraction of lectures, tests, and homework now.
I got out of the car and walked down the quiet sidewalk, finding an empty bench outside the medical library. The wind did little to cool the hot, muggy air. My clothes stuck to my moist skin. I’d chosen the most uncomfortable day to sit outside, but what options did I have? There was no way I was ready to face Mom and Nonna.
Did they know about Gio?
Heaven help them if they did and neglected to tell me I’d just wasted the last four years of my life killing myself to get into med school.
The hush of distant voices floated on the hot breeze, but I couldn’t see anyone. Campus was otherwise deserted. Gio’s voice echoed in my head:
I have Huntington’s disease.
Each word was a nail in the coffin of my career.
What was I going to do? If I went through with the test, I’d have a concrete answer, one way or the other.
But do I want to know if I have it? Do I want to know if I’m dying?
I glanced behind me. Regal and commanding, one of my favorite places on campus, the medical library stood proudly. I’d spent so many hours tucked inside its inviting walls, studying…preparing. For what?
My stomach cramped and my lungs tightened. Tears welled inside me, begging to be released. But I refused to free them. I didn’t cry. That wasn’t me. Crying was a form of letting go, not being in control. I was always in control of everything: my emotions, my grades, my life…my future.
Everything…up until now.
This was the turning point. I needed to gain control of this situation. “What are you going to do, Sophia?” I asked myself. It was okay to talk out loud since no one was around to hear. At least that was how I justified it.
The wind rustled the trees and whipped my hair into my face. I listened for an answer, but nothing came. For the first time in my life, I didn’t have a plan.
* * *
When Mom came into the kitchen from the garage, I was ready to pounce. I jumped to my feet the second she opened the door and threw her keys in the catchall.
“Oh, hey, Soph. How’d everything go?” she asked, pulling her long black hair into a messy bun.
“Not good.” I didn’t mince words.
She’d stopped in her path toward the counter and glanced over her shoulder. “Not good? What happened?”
“Tell me you didn’t know. All I need for you to say is you didn’t know.”
Mom swirled to face me head-on now. “What on earth are you talking about?”
“Mom, he’s dying.”
Her jaw dropped as my words registered in her brain. I breathed a sigh of relief at her reaction. Had she known, she wouldn’t have looked the way she did.
“Come again?” Mom walked to the table and pulled out a chair.
Following behind, I joined her at the table. “He has a genetic disorder called Huntington’s disease. It’s rare.”
“Oh, goodness.” The color drained from her cheeks. “I knew he was in a wheelchair and had hired a full-time nurse, but I had no idea his condition was life-threatening.” Mom’s eyes met mine. “I’m sorry you had to go there alone today.” She patted my leg.
“Mom,” I choked. “There’s more.”
“What?” Concern clouded her milk-chocolate eyes, turning them the color of coal.
I scooped her hands into mine. “His mom died from the same disorder. It’s genetic.” I hoped she understood what that meant without me having to explain. I didn’t think I’d get through the explanation without my emotions getting the better of me.
“Genetic,” she whispered. Then realization cleared away the confusion from her eyes. I’d never noticed how expressive Mom’s eyes were. “And what is it that he has again?”
“Huntington’s disease. It’s a neurodegenerative genetic disorder.”
Again with Mom’s expressive eyes, they widened. “What does that mean?” She squeezed my hands.
“There’s a fifty-fifty chance I could have the same disorder. It’s passed from parent to child. I’m assuming by your reaction that no one on your side of the family has it.” I spoke as if I were talking about someone else…how a doctor would talk to a patient. If I kept it clinical, practiced my doctor-speak, then the words couldn’t hurt me. I wouldn’t cry.
Mom shook her head.
“Dad’s mom died from HD. Dad got the gene from her, which means there’s a possibility that I could have gotten the gene from him.”
Mom’s eyes were glassy, filled to the brim with unshed tears. “What do we need to do?” she asked, almost inaudibly.
I shook my head. “There is nothing we can do. If I have it, I have it. There’s no cure.”
Swallowing, Mom searched my face. “Soph,” she breathed, standing up. As she rose, she pulled my arms up, forcing me to stand as well. Pulling me into her arms, she held me as tightly as she could. “I had no idea.”
I closed my eyes, taking in her comforting scent. Mom always smelled like clean clothes, honey, with the lingering smell of cream carried from the shop.
“Mom,” I mumbled into the crook of her arm. “Don’t say anything to Nonna, please.”
She rocked me for a few more seconds and then pulled away so she could see me fully. “But we don’t know for sure you have it, right?”
I nodded. “I would need to be tested. If I have two recessive genes, I’m in the clear.”
“Well.” She smiled. “Then I need to dry up these tears. Not worth getting worked up about until we have a definitive answer.” She sniffled and wiped her eyes with the back of her hand.
“I don’t know if I want to know, Mom.” I took a step backward, resting my hand on the back of the chair.
“Why not?”
“If I get the test and it comes back that I do have HD, then everything I’ve worked so hard for will have been for nothing. I can kiss practicing medicine good-bye.”
“That’s not true,” Mom argued. She walked around the counter and headed toward the cabinets. Pulling one open, she took out a glass. “You don’t have to have perfect genes to be a doctor.”
I rolled my eyes. “Mom, they don’t let people with degenerative muscular disorders operate on patients. Not to mention, when HD progresses, patients also lose significant cognitive function as well. It’s life-changing, debilitating, and awful.”
She turned the water on and filled her glass. Taking a sip, she turned around. “Oh.”
“Yeah. HD is one of the ticking time bombs of the genetic lottery. It sucks.” My throat closed again.
I will not cry,
I yelled internally.
“So, you don’t want to know?” she asked cautiously.
I shrugged, shaking my head. “I don’t know.” Plopping into the chair again, I pulled my legs to my chest and rested my head on my knees. “How old is Dad?”
She thought for a moment. “Fifty-three.”
“He’s lost the use of his legs and has involuntary muscle spasms,” I said, going over the symptoms I saw Gio present with during our short visit, like he was the crystal ball to my future. I shifted my gaze to Mom. “He’s not that old.”
She walked in my direction, coming to stand behind me. Even with the chair between us, she bent low and wrapped her body over mine, like she could protect me from anything with just her body. I wished that were true.
With her mouth at my ear, she whispered, “We’ll figure it out together,
Patatina
.”
Her words were only marginally comforting, because I could hear her own uncertainty in the statement. And as much as I wanted to believe her, there was no “together.” This was something I’d have to carry alone.
S
oph!”
I rolled over in my bed when I heard my name called from down the hall. Sunlight peeked around the edges of my blackout shades, demanding that I get out of bed.
“Sophia!” This time my name was followed by an insistent knock at my door.
“What is it, Mom?” I answered, throwing my blanket to the side. Glancing at the clock, I saw that it wasn’t quite 7:00 a.m. Was I supposed to work the morning shift today? Was that why she was after me to get up?
“May I come in?” she asked.
I padded over to the door and pulled it open. “Yeah?”
“What’s this?” She held a yellow envelope between us.
Dammit. Italy. I’d meant to throw that away. “It’s nothing.” I went to take it from her hand, but she pulled it away.
“Like hell it’s nothing.” She lifted the flap, a big grin on her face. Her eyes scanned the travel documents inside. “It’s a six-week trip to freaking Italy. Did your dad give you this?”
“Yeah. And I’m not going.”
Her eyes flicked back to my face. “Not going? What? Are you crazy?”
“No.” This time I did manage to snatch the papers from her. “Did you forget about a little thing called med school? It starts in eleven days. I don’t have time to go to Italy. This is yet another example that proves my father knows nothing about me.”
Mom shook her head. “Screw med school.”
“What?”
“You heard me.” Her eyes were like laser beams boring into me. “There is no reason why you can’t start school in the fall, like a normal twentysomething. For crying out loud, Sophia, all you do is study and work. Go! Get a life. Live a little,” Mom shouted.
I shuffled backward. “I have a life,” I mumbled. Her words stung.
“No, you don’t. Honestly, Soph, sometimes I think a part of you died with Penley.”
Ouch. That didn’t just sting; it burned soul deep. The truth hurt.
“Before we lost Penley, you used to smile and laugh all the time. You enjoyed playing soccer, going shopping and to the movies, all the things high school kids do. When she died, you gave all that up and threw yourself into school like a madwoman. What happened to that fun-loving girl?”
I chewed the inside of my lip, waiting for this lecture to end while I toed the carpet, avoiding Mom’s scrutinizing gaze.
“Sophia, I don’t pull rank on you often, but I’m going to this time. You’re going to Italy. You’re going to be a twenty-two-year-old girl for once and have fun.”
I looked up from the floor, my mouth hanging open. “Mom,” I whined. “I’ve got school.”
“To hell with school. You can start in the fall.” She crossed her arms, daring me to defy her edict.
“Like you said, I’m twenty-two. Old enough to do what I want. I’m not going to Italy.”
“When I was your age, I was newly married and you came around shortly after. I love you, Soph. You are the best thing that’s ever happened to me. I wouldn’t change one minute of my twenties. But once you get a job and start a family, you won’t get opportunities like this.” She pointed to the envelope in my hands. “Your dad has given you an amazing gift. Before life gets in the way, you need to do this. You’ll regret it when you’re older. If I have to pack your suitcase and drag you to the airport kicking and screaming, I will.” Mom grinned and then winked.
“I need the distraction of school right now, Mom,” I growled through clenched teeth.
“
Patatina
.” Her tone softened, as did the fire in her eyes. “I’m afraid school has become an addiction for you. Let’s consider this an intervention. According to your itinerary, your flight leaves in eleven days. We’ll do some shopping, get your travel papers in order, and in no time, you’ll be basking in the Italian sunshine. I assure you, it’s much better than Missouri sunshine.”
I deflated, shoulders slumped. “Mom, don’t do this, please. I need school right now.”
“I don’t know what bigger distraction you can ask for than a vacation to Italy. It’s exactly what you need. Think of it as a big history project. You can research our family heritage.”
“You sound like him. He wants me to visit his dad.”
“I knew I always liked your father.” She winked again. Her lack of hatred toward him was irritating.
“Don’t you carry even a little seed of hatred for him for leaving us?” I fell back into bed.
“Like I already said, what good did hating him do me? He wasn’t here; my hatred wasn’t spilling over to him. He wasn’t feeling any of my pain. I carried it alone. I felt it alone. Anger’s heavy, and in the end I was just hurting myself.” A humorless chuckle escaped her lips.
Mom leaned on the door frame and Nonna came up behind her. “What’s the ruckus, you two?”
“Sorry, Mamma, I didn’t mean to wake you.
Principessa
”—Mom glared in my direction—“was flexing her royal-pain-in-the-ass muscles. I had to put my foot down and squash the attitude.”
“Oh, nonsense.” Nonna waved. “My Sophia isn’t a pain in the ass.”
Mom harrumphed, turning her dark stare in Nonna’s direction. “Are we talking about the same girl?”
Here was my chance. I could play this little game, too, and bring Nonna over to my side. “Nonna,” I pouted. She’d never been able to resist my pout. “Mom’s making me go on vacation.”
“Where are you sending the poor girl? Antarctica?” Nonna put in a soft jab to her daughter’s shoulder.
“Her father has arranged a six-week Italian getaway. You’d think he’d booked her a one-way trip to hell, the way she’s acting.”
“
Italia
,” Nonna said prayerfully. Her homeland. “When does she leave, Andrea? I’ll help her pack.”
“Nonna!” I whined. “You’re supposed to be on my side.”
“When someone gives you Italy, you say
grazie
and get your butt on the plane.”
“Thank you, Mamma.” My mother bowed her head to my grandmother.
“Fine. Whatever. I’ll go.” I was beat down and tired. I groaned and hid under my covers.
“I knew you’d see reason. I’m headed to the shop, Soph. Won’t be home until later. Oh, and call the university and get school arranged for the fall.”
“Yeah, yeah,” I grumbled. After this vacation, I seriously needed to consider getting my own place.
I lay under the blanket until I couldn’t hear them talking anymore. When I knew it was safe, I tossed the cover off and sat up. “So much for my freaking plans.” I slapped my hands down on top of the blanket and traced one of the rainbow-colored double helices with my index finger.
“Dad drops an atom bomb on my future, I have to postpone med school, and now I’m going to Italy.”
Can this summer get any worse?