by Harry Kraus
“Betsy! Slow down. I didn’t get it.”
“He didn’t give you a ring?” She dropped Claire’s hand and leaned over to pull a trash can from beneath the desk to empty it into the large black plastic bag she carried. “I don’t get it. Did he give you something else? I heard of a man that gave a woman a car for an engagement present once. But it’s not like you can wear a convertible or anything. I—”
“He didn’t ask me.”
This news stopped Betsy’s pressured speech. “I, uh . . . well.”
“We had a nice quiet evening in Brighton. We ate by candlelight at DeAngelo’s. Then we saw a movie. That was it. No ring.” She shrugged and looked away. She didn’t want Betsy to see her tears. She quickly dabbed her eyes.
“You said he wanted it to be a special night.”
“It was, I guess.”
“Maybe Italian food is special to a man,” she said. “But a woman needs jewelry to make a night special.”
Claire lifted her briefcase. “It’s been a long day, Betsy.”
“What is that boy waiting for? It’s not every day that a beautiful, smart young lady like you comes along.”
Claire had expected an engagement ring. The night was going to be special, John had said. The night. That’s what he’d been hinting at, hadn’t he?
But he hadn’t come through, and now, at this moment, with all the other pressures, Claire just felt like having a good cry.
“He must be crazy to let a woman like you get away,” Betsy continued.
Not as crazy as you might think, Betsy. John knows all about me, all about the baggage I’m carrying around.
“Look at you. You’re a doctor, pretty as any model I’ve ever seen. That boy must not be too—”
Claire brushed past her, avoiding her gaze. “Thanks, Betsy.”
Claire walked up the hall, past Cyrus, who seemed to be hanging out near the exam room where Lucy knelt wrapping Lena’s ankle. She hurried by, choking down a sob as memories of her broken engagement to John Cerelli came tumbling back.
I missed my chances with John. Now he knows me too well. Any relationship with me could spell a life of disaster.
He knows all about the cloud I live under. And he’s afraid to make it his.
He knows all about the curse.
Chapter Two
Claire pulled into the long driveway leading to her parents’ home and wiped her tears with the palm of her hand. She hadn’t wanted to C move home. Now, with her medical degree behind her, she was supposed to be moving onward and upward, not backward. She hadn’t lived with her parents since age sixteen, when she’d left to escape an intolerable situation with her father and his short fuse. But that was long before they’d come to know that her father’s problems were deeper than the alcohol he used to drown his trouble, long before she’d even heard of Huntington’s disease. Now she spilled tears because of her father’s misery, because of the disruption to her plans his illness had forced upon her, and because every day she knew of her own risk to inherit the HD gene that had unraveled her father’s life.
She switched off the ignition to her new Volkswagen Beetle, a gift from her grandmother, Elizabeth McCall. She spent a moment collecting herself. It was time for strength. Her mother would need encouragement, not another burden to carry. She took a deep breath and exited the car, pausing briefly to polish away a water spot on the shiny blue fender.
Della, her mother, met her at the doorway. Della was Claire twenty years in the future. Both were strawberry blond, medium height, with a pretty smile and a voice that fell pleasant upon a listener’s ear, soprano and strong, not piercing but soft, touched by the South in an accent perfect for comforting a child with a skinned knee or melting a man’s soul.
Della smiled and held Claire at arm’s length. “You didn’t call me.”
Claire shrugged. “I didn’t have news.”
Della frowned.
“Mom, he didn’t ask.”
“But you said—”
“I said I thought he was going to pop the question,” she said, collapsing on an old flowered couch. “It turns out that just being out for a quiet romantic dinner with me is enough.”
Her mom sat across from her and leaned forward. “Give him some time. He’ll come around to realize the gem he gave up.”
As their conversation lulled, Claire picked up the sounds of her father’s arms and legs whistling across the sheets of his bed and thudding into the padded railing with erratic, senseless rhythm. Although he was down the hall in the master bedroom, the noise reverberated around the tiny ranch home as a constant reminder that illness lived there too.
She stared straight ahead, talking to her mother, but looking past her through the front window to the green yard and the forest beyond. “John’s afraid of the curse. He—”
“Don’t call it that. You hate it when other people use that term.”
Claire sighed. Her mother was right. But Huntington’s disease felt like a curse. Unfortunately, no one knows just what child of an HD parent is going to be affected. Huntington’s disease is a genetic illness passed from parent to child at the frequency of a coin flip, one half cursed, one half free. The HD gene lies dormant for decades, unleashing its disastrous and eventually fatal effects in midlife just as work, life, and love are supposed to be generously sampled and enjoyed. The HD gene is dominant. If it is present, the person carrying the gene will develop the illness, unless they die first from another disease or trauma, an event which for most would be a tragedy, but for the person carrying an HD gene, could be a blessed Rapture before the Tribulation. And so, at the peak of life, the person with Huntington’s disease begins a slide, maybe slow, maybe rapid, through mental dullness into a noncommunicative apathy. Life’s goals are crushed. Relationships are shattered. Even simple jobs become monumental obstacles. And there is no cure.
Claire looked at Della. “John doesn’t want to have to care for me if—”
“He never said that.”
“He doesn’t have to.”
“He does so well with Wally, though.”
“Mom, I see it in his eyes, the way he looks at me.”
“That’s called love, Claire.”
“No, he’s trying to see inside me, Mom! He looks at me as if he could stare past my mind into my cells, right into my genes.”
“Don’t you go lettin’ that boy look in your jeans!”
“Mom!”
Della grinned, then restrained her lips into a proper, more demure smile, more subtle, then pushed her lips forward in a silent kiss to accompany a wink with her left eye.
Her mom could be so silly. But silliness was part of what made living with her mother such a joy. In the midst of the mess of changing her husband’s diaper, Della would diffuse the stress by calling out, “Code brown, ward three,” as if she were an army general.
She coped. They laughed. But everything was not always happy. She’d seen her mother on bad days. On days when she yelled back at the disease after Wally had cursed her again. “Give me back my husband! Give me back my Wally!” Della took his face in her hands and slowed the bobbing that made eye contact impossible. “I know you’re in there,” she said, tears streaking her mascara. “And I know you still love me, Wally McCall.”
Claire allowed the corners of her mouth to turn up. “You know what I’m talking about!”
Her mother shook her index finger at her daughter. “You’re talking about letting a boy see inside your jeans, and I won’t have it! Not while you’re under my roof!”
Claire snickered. Her mother couldn’t say it with a straight face.
Eventually, their smiles faded, and Claire listened again to the thumping noise coming from the other room. “John will propose to me if I test negative for the HD gene.”
Della shook her head. “He’ll ask you whether you’re negative or positive.”
Claire couldn’t dismiss a nagging doubt. “Maybe, but he’s the one who pushed so hard to get me through the testing
process.”
“He just wants you to know, Claire. He wants to know so he can move on with life, knowing what he’s facing, not the unknown.”
“Knowing what he’s facing?” Claire raised her voice. “What about me? I’m the one who could end up like Wally.”
“There are times when I’d change places with Wally in a second.”
“You’re crazy!”
Della’s hand came down on Claire’s arm, which she squeezed to attract Claire’s attention. “And what about your spouse? Don’t you think I’ve suffered? I’m the one saddled with taking care of everything. I do the cleaning, the cooking, the feeding, the bathing, the diapering. Then there’s the finances that HD has stolen, the work that never ends on an old house that needs a major makeover, and I never get to have my husband hold me. Even a kiss with Wally is a bruise waiting to happen.”
“But you have your dignity. Wally’s lost everything.”
“Self-pity isn’t an attractive option for you, child.”
Claire took a deep breath and relaxed back against the couch again. “I know, Momma. I know you’ve suffered.”
“Don’t blame John for wanting to know. I think he should know what he’s getting into.”
“Or not getting into, as the case may be.”
“You really think he’d run away now? You think he’d leave if he knew you would get Huntington’s?”
“He did before. He broke our engagement.”
“The circumstances were different, Claire. Do I need to remind you how you strayed away while you were in Boston?”
“It gave him an opportunity to get out and still save face.”
“I can’t believe you said that. That man is a diamond. I can’t blame him if he takes it slower this time. He doesn’t want to have his heart shattered twice.”
“Mom, he should be sure I love him. Last year in Boston was different. I’ve grown.”
“And you should be convinced he loves you. He moved down from Brighton to be close to you, didn’t he?”
“Maybe he wants to keep an eye on me this time.”
“Should he?”
“Mom!”
“John has spent many hours in this house, many of them just with Wally and me, while you slaved away up in Boston. He watched how I dealt with the Huntington’s, asking me questions about how I cope and where my strength comes from. He knows what he’s getting into, and I’d be surprised if he turns his back on you if you are carrying an HD gene.” She stood up and walked to the kitchen. “I think he just wants to know so he can meet the future straight on, and not be blindsided by the unknown.”
Claire nodded. She hoped her mother was right. John had called it quits during their former engagement, but Della was correct in reminding Claire that it was only after Claire had foolishly entered another relationship. This was different. John needed space, more time.
Della interrupted Claire’s thoughts. “Wally choked again this morning. Turned blue and everything. I thought I was going to have to call the ambulance.”
“Did you give him coffee? You know we can’t give him that.”
“Of course not,” Della said. “I was feeding him oatmeal. Dr. V told me to avoid liquids without a thickener. Thin liquids go down so fast he can’t swallow without choking.”
Claire nodded. Dr. Visvalingum, or simply Dr. V, was Wally’s neurologist over at Brighton University. He’d come by the house numerous times, in spite of the hour drive. He’d handed out practical information by the gallon. He wasn’t lost in esoteric tangents, as happens with so many professors.
“Do you think we did the right thing with refusing the feeding tube?”
Claire nodded emphatically. How many times did she have to assure her mother that it was okay? “Daddy said he didn’t want it. He told me that months ago, and I know he understood what he was deciding. When he’s finally lost his ability to swallow, he wants to die. We have to let him go when the time comes. It’s his way, Mom.”
“I hate to see him choke.” She put her hand to her lips. “It scares me.”
“I know. But the day is coming—”
“Don’t say it, Claire. I know it’s coming. He’s going to die. And some days, believe me, I’m tempted to push him over the edge.” She lifted the curtain to the window over the kitchen sink. The sky was just beginning to color. “But then there are other days that, just for a moment, I catch a glimpse of the old Wally. And I know I can go ahead for another day.”
“Grandma offered to pay for a nursing home. You don’t need to do this, you know.”
“It’s my job, Claire.”
“Why? Penance for past behavior?” The words were out before Claire could stop them. She’d always suspected her mom was motivated by guilt over her unfaithfulness, yet somehow always appeared to be the loving wife to everyone else.
Della didn’t flinch. “There was a time that I stayed with him only because I felt guilty. But that was long before HD.” She paused and locked eyes with her daughter. “Love isn’t about what my spouse can do for me.”
“I’m sorry, Momma. I don’t know why I said that.”
Her mom walked forward and tussled Claire’s blond hair. “Because you inherited my keen sense of intuition, I guess.”
Claire turned and looked down the hall toward her father’s room, the room her parents used to share. Della slept in the guest room now. Sleeping with all Wally’s noise was only possible for those with total deafness. “I hope you’re right . . . about John, I mean.”
“I guess we’ll find out soon. You will keep your appointment for the results, won’t you?”
“John is picking me up at eight.”
Della nodded. “God is sovereign.”
Claire knew what her mother meant. God’s control over our lives cannot exert itself outside his loving character; that is, she needed to trust that even the bad things in life are to be received from God knowing that he is working in love, working everything for eventual good.
God is sovereign. She’d heard it a million times. But to Claire God’s sovereignty sounded like an excuse to cover up for God’s mean streak.
“I know,” she responded numbly. “Tomorrow I’ll know. The threat of uncertainty will be gone.”
She plodded down the hall toward Wally’s room.
Tomorrow I’ll see if John really loves me. The cloud will be gone. It will either be sunshine for life, or time to prepare the lifeboat. Heavy rain is comin’.
Chapter Three
The next morning, Claire opened her eyes to complete darkness, except for an eerie green glow coming from her clock radio that said T 4:00. Next door, Wally rustled the sheets and rattled the rails. He was quieter at night, not calling out or grunting, but even during sleep, he tossed his limbs around as if he were a marionette and HD a cruel puppeteer with insomnia. Claire rolled over and back, left and right, and finally rose to make coffee. Today’s the day. She’d habitually referred to it as “D day” for “DNA day,” the day when she found out the results of her genetic testing for Huntington’s disease.
She counted five scoops of coffee as she filled the filter, then shrugged and added a sixth, figuring she would need the extra jolt to overcome the hour. With the coffee brewing, she anticipated, for the millionth time, her reaction to the test results. Would she laugh or cry or merely show no reaction at all? Could a loss be so deep or a relief so comprehensive, that she would be paralyzed from expressing emotion at all?
Perhaps she would faint, or dissolve into retching sobs, or jump up yelling, “Yes! Yes! Yes!” She’d imagined her responses so many times that she feared whatever response she might show would seem practiced.
But how can someone know what her response will be, when given a magic glimpse into the future? Maybe God never intended for her to know. Maybe he designed HD to strike in midlife, so people at risk for HD would live normal lives, work and bear children, and unknowingly pass the genes along. No, that didn’t make sense. God had given some researcher somewhere th
e smarts to figure out the gene and formulate a test, so he must have intended for her to know.
Claire shook her head. That made little sense either. Somewhere, somehow, God had given someone else the smarts to make an atomic weapon, so that means we’re supposed to use it? Her reasoning was circular, and the thoughts wore a deep groove in her mind from going over and over the same territory.
How would John react? Predicting his response was easier for Claire. Positive or negative, John would put his strong arms around her shoulders . . . to give support, or commemorate the new freedom. His hug would be a brace, or a celebration, but a John-hug, nonetheless. That thought brought a smile.
She inhaled the rich aroma of the coffee and sat at the kitchen table alone, thinking about John. John, the great hugger. She liked that about John Cerelli. She’d known other guys who didn’t know the art of a great hug. They either hugged stiffly like she was their little sister and their mom made them do it, or saw a hug as some kind of passion avenue to get farther down the road. But not John. He hugged gently when she needed support, passionately when she needed love, and with added zest when the Atlanta Braves performed well in post-season.
She drank two cups of coffee, read the underlined portions of the Pauline epistles from her mother’s leather Bible, then changed into her running shorts and a T-shirt just as the sun was coming up. She slipped out into the morning air and jogged three miles, trying not to think about the test results. It was a hopeless endeavor, as anyone who has tried not to think of a white elephant has discovered. Pretty soon it became an imaginary game of fate in the balance. Every truck that passed her was a positive test; every car was a negative. She grumbled under her breath as she slowed to a walk up the lane. She should have never grown up in the country. There were too many stupid trucks.
She returned to find her mother busy with Wally’s first diaper change. She helped her dress him in a pair of jeans, which hung baggy over his bones. They slipped on a buttonless knit shirt. Buttons and Wally were a near-impossible combination. Claire shook her head. Her father’s chest looked like pale skin stretched over a birdcage. He’s in the final stages. He can’t consume enough calories to keep up with his constant motion.