Could I Have This Dance? (41 page)

Claire glanced at Brett and turned her back. She felt her heart quickening, pounding in her chest. She felt her cheeks flush. Was the news she had waited for so long finally available?

Claire heard Nadienne sigh. “Dr. V’s office was supposed to call you earlier this week. His secretary assured me she would get you on Wednesday or Thursday.”

“I’ve been at the hospital most of the week.” She paused. “I suppose you understand, being a resident.” She lowered her voice and walked away from Brett. “Is my dad’s test positive? Does he have HD?”

“I didn’t think I’d be the one to tell you.”

“He does? He has it?”

Nadienne was quiet for a moment. “Yes.”

Before Claire could respond, Nadienne added, “Dr. V is so excited about working with your family and searching out the family tree. He wants me to go back out to Stoney Creek this week and do some of the leg-work. He was so impressed that a surgery intern could make such a rare neurologic diagnosis.”

Nadienne’s insensitivity made Claire’s jaw drop.
How can you researchers be so out of touch with a patient’s feelings?
She shook her head and closed her mouth.
Wonderful. I’ve made my first impressive diagnosis. And I’ve never been so unhappy to be right.

Finally Claire mumbled “Thank you” before quietly promising to call back. She dropped the phone in its cradle and avoided Brett’s eyes.

How would our little game have gone if Brett knew I might be carrying a gene for Huntington’s disease? Training someone with HD to hold a scalpel could be a disaster!

Claire had suspected this moment was coming for weeks. Ever since she first saw the patient with HD in the ER, her gut had not allowed her to completely rest. Well, now she knew. The waiting was over. Her father had HD.

She reached up and pronounced the judgment which summed up her own feelings about her chances of climbing the pyramid. She held out a silent “thumbs-down.” She turned and walked back into the kitchen, where Brett studied her face.

“What’s going on, Claire?”

“Nothing.” She shook her head.

“Nothing?”

She shrugged. “My father isn’t well.” She looked down. “He drinks too much.”

Brett nodded and reached out to touch her shoulder. “You okay? You look like you’ve seen a ghost.”

“I may have, Brett,” she muttered.
The ghost of Stoney Creek.

Part Three

Chapter Thirty

F
or the next month, the already worn fabric of the Wally McCall family began a slow unraveling. Coping with the news that one is at fifty-percent risk for a disease that will destroy you in your prime affected each one in different ways.

For Claire, immersion into work became an umbrella which shielded her view of HD, the risk she privately referred to as “the cloud.” She shared the news with no one in Lafayette, for fear that the knowledge of her risk would buy her a quick exit from her dream. With competition at a premium, a program director would be silly to train a surgeon who was likely to develop an illness which would end a career as it began, and put patients in jeopardy if the surgeon twitched while holding a knife. One thing became clear: The more she wanted to know if she had the HD gene, the more she feared the result and the future a positive result predicted. To have the genetic test would remove all uncertainty, but she couldn’t face knowing she had the disease. If there was no cure, what was the point in knowing? On the other hand, if she was disease free, she could proceed with her life without the cloud which hung over her head like a threatening storm. But for Claire, at least for the present, not knowing if she carried the HD gene was more comfortable than finding out that she definitely had the gene, and so she opted to work forward and live life as if the cloud wasn’t there. That, however, became increasingly impossible. Every day, it seemed, brought some new reminder that the horizon looked bleak. Frequently, it was the every-other-night rundown of her phone messages, each bringing new news from Stoney Creek as Huntington’s disease impacted the McCalls.

The calls were always from Della, who kept Claire informed of each new family tragedy. “Please call your brother and convince him to get tested. He’s started racing his motorcycle, and last week he took up skydiving. He’s convinced he’s going to die young because of Huntington’s, and he says he wants to live a full life while he can.” Della sighed. “I’m afraid he’s going to kill himself with all these dangerous activities. Please call him.”

Claire avoided the call, not because she didn’t want to please her mother, but because she didn’t know how she could convince Clay to do something that she herself was unwilling to do.

Margo, in a desperate attempt to put the HD question to rest, began the genetics testing immediately upon hearing the news of her father’s diagnosis. She traveled to Brighton for weekly visits with a genetics counselor, a required part of the testing process. Kyle agreed to go once, but after that, feigned disinterest and cited his business obligations. After Margo’s third visit, she returned to Carlisle to find that Kyle had packed his bags and moved in with a college coed who had been flipping burgers part-time at Kyle’s restaurant. Kyle cited a loss of love, the pressures of business, and a sudden realization that he and Margo had drifted apart. He refused to acknowledge a fear of Huntington’s disease, but Margo and Claire suspected a different story. Sadly, Margo blamed Claire, citing the origins of her problems when Claire revealed the family curse.

Ironically, Wally and Della seemed to fare the best. Finally, they had a real reason to explain Wally’s symptoms. Even the news that his biological father was not John McCall failed to devastate him, a fact that Della thought would surely push him over the edge. In fact, after surviving his hospitalization, Wally seemed nonplused that the father that he’d been estranged from for so long before his death was not his father at all. “I knew I was different. I never felt like a McCall,” he said.

The biggest improvement came with the beginning of an antidepressant medication, and some appropriate counseling which helped Wally to reach for something other than a whiskey bottle to cope with the stress of a body no longer able to cooperate with his mind.

For Claire, the cloud was the beginning of a downward spiral. She had always been such an optimist, looking forward to her future in medicine with a near invincible attitude. Now, it seemed, the future carried an uncertainty that threatened her confidence and made her question the calling she had clung to for so long. And now, instead of digging deeper into her Christian faith for help, she faltered, unsure if God had really been watching. For years, she had fled from her roots, spiteful of the reputation of being the town drunk’s daughter. Now, the very roots she had pridefully ignored were back, firmly attached, creating a link which Claire would have given anything to shed. To Claire, it all seemed a huge cosmic mistake. God couldn’t possibly have given her such a strong desire to be a surgeon and infused every cell in her body with a gene that would make that dream impossible. Or could he?

And if he had, could she trust him? How could the loving God she’d learned about in Sunday school be the same one apparently orchestrating
this family disaster? And if he wasn’t in control, who was? And if he had given her the HD gene, he’d have known about it since before her birth. And since she hadn’t done anything to deserve such a terrible fate, how could he ever be considered good and loving? There could be nothing loving about a God who could predestine her to a life of suffering.

Slowly, Claire’s image of God began to change. It had been months since she’d darkened the doorway of a church building, weeks since she’d embraced meaningful prayer. The only one she dared share her feelings with was John, and he didn’t seem to be comfortable with her doubts. Coping with the unknown was accomplished by working harder and longer hours at the Mecca. If her head was in surgery, she couldn’t be worrying about HD. She worked long hours on the vascular surgery service, memorizing patient data and ignoring “the cloud.” After a month of vascular surgery, she rotated onto surgical oncology, where she poured every spare moment into memorizing cancer staging and treatment protocols. So her internship standing seemed strong. Her secret was intact. And her spiritual life was a joke.

It was a Friday evening after a long week on the oncology service when she spoke to her fiance by phone.

Claire thoughtlessly stirred the pan of instant macaroni and cheese and balanced the phone against her ear. When John mentioned getting a test for HD, she pushed the pan to the back burner and began to pace. “John, we’ve talked about this before. I’m not ready for any test. I’d rather not know than know I’m going to get HD.”

“It’s not just for you, Claire. I think I have a right to know.”

“You do?”

“I’m going to be your husband. I should know.”

“I don’t want to know the future if the future is bad.”

“It may not be bad, Claire. We have to know, so we can plan.”

“I’m afraid to know. I don’t want to think about it.”

“Claire, you just can’t go through life with this thing hanging over your head. It affects you. You’ve let it change you. Why don’t you just get tested so we can put this thing to rest?”

“Because I’m not ready to face a future with Huntington’s disease. The thought of ending up like my father terrifies me.”

“But you might not have the gene.”

“Right. And I don’t want to know if I do.”

“So what do you do? Just pretend it’s not there?”

“Maybe. For the most part, that’s exactly what I’m trying to do. Fortunately, I love my job, and there’s practically an endless number of hours I can spend doing it. So I work and try not to think about HD.”

“You can’t live life that way. It’s running you. Someday you’re going to need to get tested, so you can forget this, or learn what it means to leave it in God’s hands and trust.”

“I cant.”

“You can’t get tested?”

Claire paused. “Look, Cerelli. You’ve always been the laid-back one. Take life as it comes and don’t worry about the what-ifs, remember? So why is it you’re the one who suddenly has to know? Why aren’t you sitting back and trusting just like you’re preaching to—”

“I’m not preaching—”

“And I’m not trusting!” Her voice ended in a sob.

“Claire, I—”

She inhaled sharply, rhythmically, in a gasp, a sucking sound stopped only by her hand over her mouth. She’d never verbalized it before. But it was pretty obvious by her anxiety. She wasn’t trusting God, wasn’t even sure if she thought he was trustworthy anymore.

“How can I trust him?” she cried. “I feel so betrayed.”

“Regardless of your feelings, God still loves you. Even if he allows you to get HD, that doesn’t change anything.”

“I hear the words with my brain, John, but unfortunately, my emotions can’t seem to comprehend. All I’ve wanted to do, what I
thought
God wanted me to do, is in jeopardy. Having HD means giving up everything I’ve worked so hard for. How could God do this to me?”

“Claire, God is not ‘doing this to you.’”

“It feels like it. It sure doesn’t feel like love.” Her eyes began to sting.

“Remember back at Brighton, we talked about the problem of pain with Pastor George. You wanted answers for your patients. What did he say?”

Anger welled up as a bitter gall in her throat. She hadn’t intended on dumping it all out on John, but he asked for it. “Yesterday I saw a thirty-six-year-old with inoperable pancreatic cancer. He was holding his Bible, so I smiled and told him I was a Christian, but even while I said it, I felt like such a hypocrite. He looked at me and asked me why he had to suffer.” She halted. “I didn’t know what to say. I know all the pat theological answers,” she snapped before continuing in a mocking tone, “‘God’s ways are not our ways.’ ‘In all things God works for the good of those who love him, who have been called according to his purpose.’”

“That’s true, Cl—”

“Well, what if I don’t love him? What if I’m not called?”

“Claire, uh, honey, uh—”

“What if he’s getting me back for abandoning my family when my father was sick?”

“He doesn’t work like that. It’s not tit for tat. Evil touches the righteous and unrighteous. It’s part of the Fall.”

Claire didn’t want to hear it. She didn’t want theological arguments. She wanted to cry on John’s shoulder. She fought the urge to hang up. She took a deep breath and counted, trying to slow her racing heart. When she reached ten, she responded, “All of the things we studied seem shallow when you’re the one facing pain.”

John stayed quiet. She’d unloaded things that she’d never had the nerve to express, the quiet doubts that people in pain are too afraid to confess.

Finally John sighed and cleared his throat. “So what did you tell your patient?”

“I put on my sweetest Sunday school smile and I said I’d pray. Then I practically ran out of there to a call room for a good cry. I felt so plastic. All of my practiced theological answers fell short when I looked at the pictures of his children on his hospital tray table.”

“We don’t understand it, but God allows evil to touch us to accomplish his purposes. He even allowed evil to touch his only Son, so why should he—”

“John! Stop!” Claire felt like screaming. Instead, she restrained her voice and took a deep breath. “My patient didn’t want theology. He needed someone to hold his hand.”

“But there are answers, Claire. The Bible—”

“There is a time for theological analysis, answers to the why questions, but, unfortunately, everyone affected by pain experiences it emotionally. All the intellectual arguments in the world do nothing to ease the initial emotional upheaval.”

“Come on, honey, it’s got to be an encouragement to know that all things work together for good.” John raised his voice. “You can’t make a mockery of the Bible.”

“I’m just telling you how I feel. And I’ve started looking at all my pat answers, and once I was the one facing the trouble, they all seemed a little silly.”