In the doctor’s office, she and Tom sat in space-age black leather chairs in front of Dr. Misner’s desk. Mara would never forget the desk—one of those ultramodern black affairs that looked more like a spaceship than a piece of furniture, with gleaming chrome legs that matched the ones on the chairs. It was more whimsical than serious, she thought, and she wondered how people who actually had medical issues responded when the doctor delivered bad news to them from behind it. He might have the sympathetic eyes, warm hands and soft voice of a physician skilled in delivering sobering news, but all of those effects would be completely undercut, she guessed, by the unconventionality of the desk.
While Mara occupied herself with thoughts about office fixtures, she could hear the former classmates catching each other up on the missing decades between medical school and that evening. She smiled while the two men compared notes about practices and office staff and children, confident that she and Tom would be on their way back home shortly, this futile appointment behind them.
After the reunion chatter was complete, Dr. Misner turned to Mara, smiling kindly, and asked how he could help. She smiled back blandly and said nothing.
“Well,” he said, unfazed, “why don’t we start with an easier question? Let’s talk about your medical history.”
As much as Mara was determined not to take the entire affair seriously, she decided it would be good cover to at least appear cooperative. And her medical history wasn’t complicated; it began and ended with her, since the orphanage had given her parents no information about her birth parents’ medical condition or history. She told him as much as she knew.
“Okay, then, now we’re rolling,” Dr. Misner said, clearly pleased with himself for having established some rapport with his recalcitrant patient. “Let’s start again with discussing why you’re here,” he said, and before Mara could fix him with the same blank stare she’d begun with, Tom jumped in.
“Would you rather I cover it?” Tom asked, reaching over and taking her hand. Mara nodded, and with his hand still around hers, Tom spoke quietly, almost apologetically, as he described to the other man the changes he’d seen in his wife. While he spoke, Mara stared at their joined hands and told herself the stories she was hearing weren’t about her. She had been forgetful, somewhat impatient, a little irritable. But the woman he was describing sounded psychotic—objects hurled at the walls (or Tom) on what sounded like a weekly basis, doors slammed over minor misunderstandings, expletives shrieked not only at him, but at Gina, too, and Steph, and even Pori and Neerja.
After a while, she tuned out the physician she was married to and watched the one behind the desk. He was making notes on a yellow pad as he listened. Mara tried to peer surreptitiously over his desk to see what he was writing, but she wasn’t able to make out any of the words. Now and then, she saw him underlining certain words, sometimes adding big, loopy circles around them. He asked a number of follow-up questions, and as Tom answered, Dr. Misner added more lines under words, more circles around others.
Mara shifted uncomfortably in her chair, pulling her hand away from Tom’s. It was clear Dr. Misner felt he was on to something, and she grew increasingly anxious, and increasingly unsure of her defense strategy.
When Tom was finished with his recital, Dr. Misner looked up from his notes, glanced at each of them in turn and asked, “And how long have the involuntary arm movements been going on?”
Mara asked, “What involuntary arm movements?” while at the same time Tom said, “Over a year.”
They turned to each other with gaping mouths, each stunned by the other’s answer. Though she didn’t want to do it, Mara forced herself to look at her hands. To her horror, they were moving back and forth over her legs, out to the arms of her chair, back to the middle again, as though her lap were a piano and she were playing a complicated piece. Quickly, she shoved her hands under her thighs, pressing her legs down hard. Tom murmured something soothing and patted her leg.
Dr. Misner circled a word on his yellow pad. He circled it again and added an underline. Then he nodded thoughtfully, studying his notes for a moment before raising pained eyes to Mara. She cleared her throat and shifted again in her chair as he reached into one of the drawers in his spaceship desk and took out a business card. Rising slowly, almost reluctantly, he walked around the desk to Mara and Tom’s side. He leaned against the desk with a tired sigh, folded his hands in his lap and trained his soft eyes on Mara.
The expression on his face made her lips start to tremble, so she cast her eyes to the floor. His shoes, expensive black loafers, were tapping a rapid beat against the carpet. She stole a quick look at his face again and realized: he was nervous. Her lips trembled more.
She wanted to get up and walk out before he could tell her what he was anxious about. But Tom would only say she hadn’t met her obligation, and would drag her back again another day. She took her hands out from under her legs and gripped the arms of her chair, forcing herself to stay put.
“Mara,” Dr. Misner said gently. “Tom. I can’t express how sorry I am to deliver this news. And before I go on, let me say we can’t know for sure without a blood test. But based on everything you’ve told me, about the forgetfulness, the mood swings, the irritability, the depression and anxiety, and based on Mara’s physical symptoms, I’m afraid I’m unable to rule out Huntington’s disease at this time. I’d like you to see a specialist. There’s a Huntington’s clinic at Baylor Hospital, downtown. Evan Thiry is the man who runs it.” He handed the business card to Tom, then folded his hands again.
“Dr. Thiry can take you through some cognitive and physical tests to determine whether Huntington’s is a real possibility. If he agrees with my theory that this may be what’s going on with Mara, he can confirm it or rule it out with certainty by doing a blood test, which you may or may not decide to undergo. But whatever you decide, Dr. Thiry’s clinic can provide a number of services, both medical and emotional, that I think the two of you may benefit from. And later, when she’s old enough, your daughter. They have wonderful pediatric social workers on staff who can help children deal with—”
He paused for a second before speaking again. “I’m so sorry. I’m getting ahead of myself. I’m looking at Tom here, and I know he understands Huntington’s. But I shouldn’t have assumed you know about it, Mara. Have you heard of Huntington’s?”
She thought she had. She remembered hearing Tom talk about it once—after he’d read about it for a class in medical school, maybe? Or had one of his partners treated a Huntington’s patient? She couldn’t recall, and she wasn’t sure she’d ever heard all the details about the disease, but she could guess now, based on how Dr. Misner was acting, that it was something truly horrible.
She turned to Tom, to ask him to remind her what it was he’d told her about it. She hoped he’d roll his eyes and tell her the other man was way off base, that whatever it was that was going on with her, it didn’t warrant Dr. Misner coming around to the front of his ridiculous desk, leaning toward her the way he was leaning, looking at her the way he was looking, talking about specialists and blood tests and social workers who could help her daughter cope. But Tom’s eyes, shining with tears, told her something else.
Mara turned back to Dr. Misner and shrugged, and he put a large hand on one of hers. His eyes never leaving her face, he described the disease in a low, gentle voice. Tom pulled his chair closer to Mara’s and put an arm around her, and out of the corner of her eye she could see him studying her expression as Dr. Misner went on. She tried to focus on the doctor’s words as her mind raced, first to make sense of what he was telling her, and second, to prepare an argument as to why he was as wrong as her husband in suggesting there was anything wrong with her beyond mere work stress and advancing age.
She only managed to pick up on every fifth word or so. The rest of Dr. Misner’s sentences were muffled, as though he were speaking over a car radio that was going in and
out of frequency.
Degenerative neurological disease.
Progressive brain cell death.
Caused by a genetic disorder. Every child of an affected parent has a fifty percent chance of inheriting.
This is why he’d asked so many questions about her birth parents, Mara thought. If only the orphanage had provided records to Pori and Neerja, she could whip those out and show Tom and his classmate how cracked they were.
Unless the records didn’t show that. She pressed her eyes closed quickly against the thought. But she allowed herself, before she opened them again, one more notion along the same lines: thank God Laks was adopted, and didn’t share Mara’s genes. Laks’s birth parents, Tom and Mara knew from the thick file they’d received, had no malfunctions in their DNA.
Characterized by decreased mental function.
Gradual loss of physical control.
Mara sat a little straighter and almost laughed with relief. Dr. Misner was as overly dramatic as her husband; neither of those things applied to her. She was functioning perfectly fine, mentally. And she certainly had no problems with physical control. She dropped things from time to time, but didn’t everyone?
Although, if she thought about it, she would have to admit she’d been doing it more often lately. She had fallen out of Downward Dog pose in yoga class twice last Saturday. Steph, on the next mat, had teased under her breath, “It’s not Drop Dead Dog.” But clumsiness didn’t amount to “loss of physical control,” Mara told herself.
Involuntary movements of the face, body and limbs, commonly known as “chorea.”
Mara regarded her hands. To her dismay, they weren’t gripping the chair arms as she’d intended, but were instead moving up and down the arms, back to front, front to back, in a rapid motion she had been completely unaware of. She shoved them back under her legs and pressed her thighs against them again, harder this time.
Other symptoms include depression and anxiety. Mood swings and personality changes.
She felt her cheeks warm.
Forgetfulness.
She swallowed hard and swung her eyes from Dr. Misner to Tom. He was biting his lower lip and his face was ashen.
Gradual decrease in ability to perform daily activities such as work, driving.
Eventual inability to walk, speak, swallow, perform self-care.
Completely dependent on others in late stages.
Wheelchair. Nursing home. Feeding tube.
Limited awareness of surroundings. Inability to speak. May not recognize family members.
Life expectancy ten to fifteen years after onset of symptoms.
No effective treatment to slow progression of brain cell death.
Fatal.
No cure.
When Dr. Misner was finished, he put a hand on her shoulder. “It’s a lot to take in,” he said gently. “I’ll give you a minute to absorb it, and then we can—”
Mara couldn’t force her lips to stop trembling. There was no way she’d be able to deliver a convincing argument against both of these men in her present state. She revised her strategy: if she could make it out of the office without crying, without letting them think they’d gotten to her, she’d consider that a victory. She stood abruptly, shrugging the doctor’s hand off her shoulder. “No need,” she said.
Dr. Misner moved toward her and she turned quickly, making it to the door before he could get past her chair. She couldn’t take another second of his soft voice and understanding eyes and his prediction that what was wrong with her was so much worse than mere job stress. Tom stood quickly, too, and followed her into the hallway, a hand on the small of her back as he led her to the elevators. Dr. Misner caught up with them and walked beside Tom. Mara saw them exchange knowing glances and nods and saw their lips move, but the blood in her head was swirling too loudly for her to make out their conversation.
In the car, she closed her eyes and lay back in the seat, pretending to be too exhausted to speak as she thought through the long, dreadful list Dr. Misner had recited and told herself none of those things would ever happen to her. Tom drove in silence, a hand on her leg. When they pulled into the garage, he hurried to get her door for her but she pushed it open herself and brushed past him. She busied herself in the kitchen, filling and then slowly drinking a tall glass of water while she waited for her nerves to settle.
Tom stood nearby, waiting. The look on his face—all compassion and sympathy without a trace of the “I told you so” she’d been expecting—made her feel enraged.
“Of course, Misner could be wrong,” he said, reaching to put a hand on her back. She stepped out of his reach. “I hope to God he’s wrong.” He moved closer and tried to wrap his arms around her but she edged sideways, out of his range again, and he let his arms fall to his sides.
“I could call Dr. Thiry’s clinic if you want,” he said. “Arrange for the blood test. You tend to want certainty about things. The tests would give you that.” He touched her shoulder briefly, drawing his hand back before she could move away.
“You don’t have to get tested, of course,” he said. “It’s up to you. This might be the one time you’d prefer not to have certainty, and that would be totally understandable. You heard what Misner told us: since there’s no cure, a lot of people who’re at risk decide they’d rather live with a fifty-fifty chance they don’t have it than a one hundred percent certainty they do.”
Mara considered her husband. She hadn’t heard Misner say that. She wondered what else she’d missed. It didn’t matter, she told herself. Tom and his med school pal were both way off base.
“And I’d understand if that were your decision, too,” Tom said. “But like he also said, you can still get treatment for some of the symptoms, whether or not you want to have the confirmatory test. Depression, anxiety—those can be treated with medication. I know I’ve said this before, and you haven’t wanted to hear it. But if you took something for those things, you’d be happier. Less bothered by . . .” He paused. “Everything.” He was so dramatic, she thought. She wasn’t bothered by everything. Not all the time, anyway.
“And if you do want to get tested, and if it turns out positive, there’s still hope. They’re doing research all the time to find a cure, to figure out how to slow it down.”
Mara wondered if Misner had told them that, too, or if Tom happened to know it on his own. He waited for her to respond, and the hopeful look on his face annoyed her. She fought to control her anger—no sense in proving Tom’s case for him.
“Thank you,” she said stiffly. “But with all due respect, I think your wonderful Dr. Misner is as far off about this as you are. It was a moving speech he gave, and he played the part extraordinarily. But there’s nothing wrong with me.”
Tom’s eyes widened.
“Fine,” she said, “I forget things. But I am a working mother with a high-stress job. I’m almost forty.” He started to speak but she held up a hand. “And maybe I’m irritable sometimes—more than I used to be. But we’ve had some hard times lately. We’ve grown apart. We’re not the team we used to be. And that’s making us both act differently.
“And yes, I’m a little klutzy all of a sudden, a tad fidgety now and then. While you, I will point out, are easily annoyed. Impatient. And obsessed, so it would seem, with finding some kind of medical issue on my part that you can blame all our troubles on.”
He made a noise in protest but she shook her head and raised a finger to stop him from interrupting. “I admit I haven’t been easy lately,” she said, “and I’m sorry for that. But neither have you. And at least I’m not dragging you around to old classmates of mine, having them describe some horrible, degenerative, fatal disease and telling you, ‘I think you might have this.’ If I were, I expect our troubles would get a lot worse.” She arched a brow, driving home the point: after this stunt, he only had himself to blame if things became e
ven more tense between them.
He reached for her again. “Mara.”
She stepped quickly around him and walked to the doorway. “I’m going to bed,” she said as she left the room. “I’ll put your pillow and a blanket on the couch.”
9.
Scott
Unable to focus on spelling and grammar, Scott shoved the English papers aside and opened his laptop. As he waited for it to boot up, he craned his neck to listen to Curtis read. He loved how the boy sounded out each word in a whisper, running his finger slowly underneath the sentence.
“You . . . can . . . take . . . the . . . plate.”
He listened for another few seconds, then opened his favorites list and clicked open the Not Your Father’s Family forum, the online support system he had relied on since the night he and Laurie agreed to keep Curtis for the year. Panicked at the thought of becoming an instant father, however temporarily, he had surfed the Internet for hours before stumbling on the hodgepodge of regular posters: 2boys, a widower raising his own son and a stepson; flightpath, an older poster who had been a single mom to two daughters after divorcing their alcoholic tyrant of a father; LaksMom, an adoptive mother; SoNotWicked, a stepmom and the creator of the forum.
Over the past year, Scott had talked to them almost daily about everything from parenting-related topics like discipline, bedtimes and homework supervision, to more general lifestyle-centered issues like balancing work and family, career changes and favorite recipes. And eventually to far more personal subjects, like disagreements with friends, marital problems and even sex. His online confidants didn’t know his real name or what he looked like, but they knew as much about the joys and stresses of his relationship with Laurie as Pete did, and as much about his love for his little man.
He scrolled to the top of the page to read the day’s topic.
Five Days Left Page 6