Could I Have This Dance? (23 page)

She thought about Brett’s warning to keep her concerns about HD quiet. She couldn’t exactly have the program director knowing that she might start losing control of her hands, could she? No, she’d have to keep her intentions secret, at least from anyone affiliated with the residency program. She checked her watch. She had at least an hour before afternoon rounds with Dr. Fowler. Just enough time for a jaunt over to the basic science building which housed the department of genetic studies.

She took the stairs to the main lobby, then exited the air-conditioning into the muggy summer heat. She crossed the road, heading toward a modern rectangular building striped with blue window glass. Once inside, she studied a directory in the foyer, locating the department she desired on the third floor. She took the elevator and studied the door labeled
Genetics.
There were four physicians’ names listed below the larger label, none of which Claire could pronounce.

She pushed open the heavy door and was greeted by a cheery receptionist. The woman, no older than twenty, had eyelashes too long to be real, and even longer red fingernails. She put down the phone. “May I help you?

“Hi. I’m interested in finding out how I might obtain a genetic screening test.”

“Oh, that’s easy.” She picked up a thick manual on the corner of her desk. “Our department handles all sorts of requests. If you have a specific test in mind, you’ll have to give the patient the lab slip with your signature, with the name of the test and the date. Just have the patient register in the lobby so we can have their patient data recorded in the computer.”

“No, I mean—”

The receptionist didn’t seem to hear. She just kept on explaining. “Of course, most of our testing is done in conjunction with the counseling services. So, if that is required, we set up the sessions in advance of the blood test—”

Claire raised her hand. “No, I guess I didn’t make a clear request. I’m interested in getting a specific blood test myself.”

This seemed like new information for Ms. Longlashes. “Well, I, oh, I … I’m not sure I can help you with that. You have to be referred by a physician requesting a specific test.”

Claire shrugged. “I’m a physician. Can I order a test on myself?”

The receptionist shook her head. “I don’t think so. Just what test is it that you want?”

Claire saw a woman in a gray business suit step into the open doorway behind the receptionist. She had closely cut white hair and a trim figure. Claire looked back at the receptionist to address her question. “Huntington’s disease.”

The receptionist’s expression was blank. She opened the manual and began paging. “I’ve heard of that before,” she muttered. “Just what is Huntington’s disease?”

Claire didn’t really want to get into a clinical discussion with this clerical gatekeeper. Fortunately, the woman in the doorway stepped forward. She spoke softly to the secretary. “Don’t worry about this, Kelly. I couldn’t help but overhear. Perhaps I can assist you.” She looked up at Claire and held out her hand. “I’m Dot Freedman, a social worker. I work in genetics counseling. Why don’t you step into my office, Doctor …”

Claire took her hand. It was warm, like the woman’s smile. “McCall. Claire McCall.” She followed the woman into a small office with green carpeting and walls the color of sand. Pictures of birds—large, colorful prints with captions revealing the scientific genus and species—were evenly spaced along two walls. The third had photographs of young children, and several other family portraits. The last wall was completely covered, from ceiling to floor, with books.

The counselor lifted her hand. “Have a seat.” Rather than sitting behind the large old desk in front of the books, Dot chose one with padded brown leather next to Claire’s. “I take it you’re a resident here at the university.”

“A surgery intern.” She took a deep breath. “For a whole week now.”

Dot smiled. “And you want to be tested for Huntington’s disease?”

Claire nodded. “Right.”

Dot clasped her hands and leaned forward. “Do you have a parent with Huntington’s?”

Claire wasn’t sure where to begin. She shifted in her seat. “Not exactly. I think my father may have it.” She watched Dot’s expression. Her face registered concern and question, so Claire continued. “He has a lot of the symptoms, but he’s never had anyone make a diagnosis.”

“Are you showing symptoms yourself?”

“No.”

“Do you have other relatives with Huntington’s? Perhaps we know the family. We have a state genetics registry which lists all the known Huntington’s disease families in Massachusetts.”

Claire shook her head, and looked at her watch. She had to be in the ICU for rounds in forty-five minutes. “I’m not from here. I’m from western Virginia, the Apple Valley, from a town I’m sure you’ve never heard of … Stoney Creek.”

Dot’s eyes brightened.

“You know of Stoney Creek?”

“I’ve even been there.”

“Nobody around here has heard of Stoney Creek.”

Dot leaned back and laughed, her eyes lighting up like a delighted child at Christmas. “Our bird-watching club did a tour through the area. I spent a whole day tramping through the mountains west of Stoney Creek. In one day, we documented eighty-three different birds.” She launched into a list of scientific names which were immediately lost on Claire. “Oh, my,” she added. “I’ve gone on and on.”

Claire smiled. “I had no idea the valley was so famous.”

“Oh, it’s a wonderful place.” She fluttered her hands in the air, in a way which reminded Claire of the birds Dot loved so much. “Enough of that.” Her face turned serious. “Tell me about Huntington’s disease in your family.”

“No one has ever made a diagnosis. But there is a curious legend in our town.” Claire paused and looked at her watch again. “It’s called the Stoney Creek curse.” She watched the counselor for a reaction. If there was any negative response, Dot’s face didn’t show it.

Claire continued, explaining her situation by telling the story of Harold and Greg Morris and their still, and about the rumors of people in subsequent generations affected by a curse, stumbling about, losing control of their movements and speech. She hesitated when it became obvious that she would have to explain how this applied to her own family. Did telling this counselor constitute breaking her promise to Grandma McCall? She weighed the situation. Her grandmother’s concern was that the information not get back to Wally or the family. Certainly she wouldn’t mind if Claire shared the information with a medical professional. That shouldn’t have any effect on her family.

She looked at the counselor. Dot seemed reliable and sympathetic. Trust seemed her only reasonable choice. “This is confidential, okay?”

“Sure. Everything we do here is.”

Claire explained about the question of her father’s paternity, and the possible family link to the Morris clan. “This is where it gets sticky, because Grandma has never told this to my father.”

“Has your father ever seen a doctor?”

“Not often. My mother took him to a local emergency room, and the physician there just thought my father was experiencing alcohol withdrawal.”

“Hmmm. And you just learned about this yesterday?”

She nodded. “My grandmother kept it a secret until I started raising questions about the possibility of a genetic disease in the family.”

“And you think you may have solved the mystery of the Stoney Creek curse and discovered a previously undiagnosed pocket of Huntington’s disease in one stroke.”

“I’m afraid that’s a possibility.”

“So you thought the best approach to a diagnosis was to obtain a blood test yourself?”

“It certainly would answer the question for me. My whole career is at stake here.”

Dot took a deep breath. “I see.” She paused. “Have you stopped to think what a negative test would mean?”

“I wouldn’t have to worry about HD.”

“But it would still leave unanswered questions for your family. Just because you’re negative doesn’t mean that it’s not something that your father and siblings might face.” She sat up straight. “On the other hand, would you really want to know if you had a genetic disease, if there is no known cure?”

“I hadn’t really considered that.”

“You must also consider that with modern-day medical practice and detailed genetic databases like our own in every state, a population of people with Huntington’s disease would be extremely unlikely. It would be much more plausible from a probability standpoint that the physicians who have seen your father are correct. He may just be suffering from the ravages of alcohol abuse.”

“But what if he’s not?”

“That’s certainly a possibility, Claire, but it is up to your father to see a reliable neurologist who is familiar with HD before a firm diagnosis can be made.” She paused. “Are there other people besides your father with symptoms? A relative perhaps?”

Claire thought about her conversation with Mr. Knitter back at Fisher’s Café. He had mentioned several others whom he said were affected by the curse. “I think so, although I don’t know them directly. There are rumors about the curse affecting people in our valley, but I don’t know of a family link.”

“So all you really have is a suspicion about your father based on his own symptoms, and the report of similar symptoms in a man who may or may not have been your father’s father.”

“Yes, but—”

“And was this man, the one who raped your grandmother, also an alcoholic?”

Claire nodded. “I think so.”

“So there is another possibility. Alcohol could be responsible for their symptoms.

“Could be.”

Dot made a clicking noise with her cheek. “Hmmm.”

“What are you thinking?”

“Just that this is a very complicated and important issue for you. It is going to take some time to resolve this.”

Claire frowned. This was starting to sound very much like a typical, I-feel-your-pain psychology gobbledygook.

Dot went on. “I think you must avoid focusing only on the negative possibilities here. You have to admit that there is still a good chance that your father does not have Huntington’s, and that this is all a very unfortunate misdiagnosis.”

“But it would be easy for you to test my blood, right?”

“A lab test is not physically difficult to obtain. You know that. But that’s not the issue here. The testing process for someone at risk for HD is a process of three to four months that involves our whole team of genetics counselors, an exam by a neurologist, and maybe even a psychiatrist. It’s not just a simple blood test. We do not take our responsibility lightly. Unloading information about a genetic time bomb like HD can have profound physical, emotional, and financial implications.” She paused. Claire could feel her eyes boring in on hers. Claire looked away. “Claire,” she continued, “this is an intensive process, and not an inexpensive one. And the unfortunate reality is that most people pay it out of pocket, not wanting their insurance carriers to know about the result.” She shook her head. “Most fear losing their health insurance or their jobs, if their employers find out the information.”

“That’s discrimination.”

“That’s reality. Most people with Huntington’s disease eventually require full-time nursing care, usually for years. It can be very expensive for a health insurer, so it’s not the kind of patient they want to cover if there is any way out.”

Claire never anticipated a blood test would be so complicated. “How much is the testing process?”

“Three to four thousand dollars.”

Claire gasped.

“But I need to clarify something for you. We’ve never begun the testing process on anyone without a relative with a known diagnosis of Huntington’s disease. It would seem premature to put you through an intensive evaluation only to find out that your father’s problems were explainable by some other malady.”

She sighed. “There is no other way to get a blood test?”

The counselor nodded. “Let’s say a patient has characteristic symptoms of the disease. If a neurologist has a strong suspicion of HD, even in
the absence of a family history, a blood test will usually be drawn. In that case the price is only about four hundred dollars.”

“But that’s not available to asymptomatic people at risk?”

“Right.” She frowned. “Claire, it may not seem fair to you, but we feel we have an obligation not to hand out information about a person’s genes without helping them understand what we’re telling them. In essence, we’re letting people see the future, predicting horrible circumstances like cancer or other serious illness. News like that changes lives, Claire.”

Claire wasn’t sure how to respond. She shifted uncomfortably in her seat and checked her watch. She’d never anticipated that things would be so complicated.

“Not everyone is emotionally equipped to deal with the kind of information we handle. We have some clients that, after the counseling process is over, decide they do not want the information that’s available. They somehow make peace with not knowing, finding solace in the chance that they might not have Huntington’s disease. They’re more comfortable with that than finding out that they definitely will get it.”

“Okay, I hear you. I had no idea how complicated this was. I only heard my grandmother’s news last night, so maybe I just made a quick decision to get the problem solved.” She smiled sweetly. “I think it’s part of what my guidance counselor in medical school called ‘the surgical personality.’”

Dot smiled in response, and Claire went on, “So what do you think I should do?”

“Find out more about others around Stoney Creek that may be having symptoms. Do a little digging to see if anyone has ever had a medical professional make a diagnosis. Find out if there are any relatives with this problem.”

Claire stood up.

“If you find out more about your family, or if you’d just like to chat, I’m almost always right here.”

“Thanks. You’ve certainly given me some things to think about.” Claire held out her hand.

Dot received her warmly and cradled Claire’s outstretched hand in both of hers. Her smile faded. “Claire, digging for family information like this can be frustrating. As you’ve already discovered, tracing a genetic line can be hindered by issues of paternity. Some people may not take so kindly to your questions.”