Tom pushed her, explaining the staff at Dr. Thiry’s clinic would do the same. Was she sure she was ready to find out? Did she know how she would feel, what she would do, if she tested positive?
She told him she was ready. “If it’s positive, I’ll feel relieved, more than anything,” she said, still bent forward, arms hugging her sides. “I’ve known something isn’t right with me. And I’ve felt us slipping apart because of it. I know you have, too. The stress of not knowing, for both of us, has been excruciating. Even if the answer is terrifying, it’ll be an answer.” Looking at him nervously, she said, “I hope if we can name it, know what we’re dealing with, then maybe we can find our way back to each other again?”
“We can,” he said, taking her shoulders in his hands and gently raising her back to sitting. He put an arm around her and pulled her close. “We can absolutely find our way back to each other. We’ve already started.”
She pressed her cheek against the warm skin of his hand. “I’m going to die,” she whispered. “Before our grandchildren are born. Before Laks even gets married, graduates from college—”
“Love, let’s find out first, before you—”
“I have it,” she said. “I know I do. And so do you.”
As she spun the suncatcher again, Mara felt a tear slide down her cheek, then another, then a stream as she remembered how she had doubled over again, this time with her head in Tom’s lap, her arms clutched desperately around his waist, her shoulders heaving as the force of it hit her. What she’d be leaving behind.
“I won’t be there for her,” she cried. “She won’t have a mother. I won’t get to see her grow up. I’m going to miss it all.”
“Oh, Mara,” he said, and she could hear the agony in his voice even now, almost four years later. Feel the weight of him as he folded himself on top of her, trying to shield her from danger. But the threat wasn’t coming at her from the outside, and no matter how closely he pulled her into him, no matter how completely he covered her body with his, she knew he couldn’t protect her from the attack she was under by her own body.
11.
Mara
They spent almost six hours at the Huntington’s clinic on their first visit, and it was a blur of interviews, meetings, tests and exams that Mara hardly recalled now. What she remembered most vividly were the little things. The kindness of the team leader, Betty, who coordinated all of Mara’s tests and interviews for the day and held her hand as she walked her and Tom from exam room to office to conference room.
The way Dr. Thiry greeted her, taking her hand in both of his and holding it for a long time. It was a gesture that made her feel instantly cared for and safe, the way she still felt every time she set foot in the clinic. How Tom reached for her hand a million times, rubbed her shoulders every few seconds, kissed her cheek, her temple, her forehead, told her he loved her.
Or maybe those weren’t little things at all.
The various members of Dr. Thiry’s staff spent ages explaining the disease in great detail, but Mara had read so many things about Huntington’s disease, or “HD,” on her own, it was hard to remember now what information she had learned from where. She knew before she arrived at the clinic that HD is a genetic stutter, a higher-than-normal repeat of a certain protein sequence—the “C-A-G sequence,” or “CAG”—at the end of a specific DNA strand.
She knew the blood test that confirmed whether a person had HD or not did so by showing the number of CAG repeats in the person’s DNA. Below 35 repeats and you were fine—no HD gene in your DNA, no future symptoms to worry about. Above 40 and you were positive for HD, and would develop symptoms at some point, assuming you lived long enough. Between 36 and 39 and you were in no-man’s-land, and you had to wait and see; maybe you’d develop the symptoms, maybe you’d skate free.
Mara stopped the church from spinning and traced her index finger along its outer edges as a few details of that first appointment came into focus. In their hour-long session with Betty, Mara had asked if it was true that someone who had a higher CAG score—45, say—would decline faster than someone with a score of 40. She had read online that a higher score was worse; it meant HD would annihilate your neurons faster, cutting off the communication between your brain and muscles with greater haste, so you lost control over your limbs sooner. It meant it would kill you quicker. The kids with juvenile HD, for example, had CAG scores in the 60s, and only about five years between HD’s first appearance and its final, fatal blow.
She remembered Betty saying no, there wasn’t a scientifically proven correlation between high CAG score and rate of progression. And that was the first, but not the last, time Mara realized she might not be able to rely on the clinic, or the medical profession in general, for her information. There was still so much they didn’t know, Betty said, and by “they” she meant the MDs buried in labs, trying to sort out the why and how of it all.
But meanwhile, in the real world, there were plenty of people living with the disease and sharing their experiences online. And even if the guys in the white lab coats hadn’t caught up, Mara knew what she had read: dozens of testimonials from HD patients and their spouses talking about how a person with a CAG score of 45 had gone downhill so much faster than their uncle or brother or grandfather who’d had only a 41.
And she also knew what she’d seen: a video of a woman with a count of 46 who only eight months earlier had scored two goals in a parents-versus-kids soccer match with her daughter, and now stood grimacing in front of a camcorder, her upper body lurching so dramatically it looked like she’d topple over any second. The woman’s arms flailed uncontrollably and she reminded Mara of the brightly colored, people-shaped wind socks that stood in the parking lots of car dealerships, their torsos and limbs bending and twisting and waving spastically with each new gust of wind.
Another thing Mara remembered distinctly from their first visit to the clinic was that when Dr. Thiry asked about her chorea—the involuntary limb movements Dr. Misner had noticed and explained to her—she was once again surprised to look down at her hands and see them moving rapidly over her lap. She looked wildly at Tom and he shrugged apologetically. “It’s usually pretty mild. It only gets this bad when you’re under a lot of stress.” Mara clasped her hands together to stop them from moving and Tom leaned over and kissed her. “This is pretty damn stressful, love,” he said.
Dr. Thiry explained it wasn’t uncommon for people with HD to have a marked misperception of their own movements. Someone who fidgets constantly because of chorea might not realize they’re moving at all, he said. Or they might have an extremely irregular gait, but believe they’re walking perfectly normally.
“It’s called anosognosia,” Dr. Thiry said.
“Anosognosia,” Mara repeated, thinking it was a strange-sounding word. But then, it was a strange phenomenon—how could someone’s arms be moving without them knowing? How could someone’s entire gait change without their awareness? Implausible as it sounded, it appeared to be her reality now.
“Anosognosia,” she whispered to herself, staring at her still-moving hands. It was like they were attached to someone else’s body.
Speaking to Tom, Dr. Thiry asked, “So, there’s been chorea for some time, I take it? Any other physical symptoms?”
Tom glanced furtively at Mara before turning back to Dr. Thiry and nodding once. “She drops things,” he said quietly, and Mara knew he was torn between trying to spare his wife from hearing more distressing news about herself and giving Dr. Thiry the information he needed.
“It’s fine,” she told him, smiling to show she was no longer on the defensive. “Tell him everything.”
Tom shifted uncomfortably. “She runs into things, too,” he said. “End tables, the kitchen counter. And . . .” He paused as though gathering the courage to say the next words. “She falls now and then.”
“You’ve talked to Steph?” Mara asked, remem
bering her Drop Dead Dogs in yoga. There’d been many more of them since the first.
Tom cocked his head. “No. I’ve seen you fall. Why? Have you fallen in front of Steph?”
“Not very many times,” she whispered. He moved his chair closer and put an arm around her.
Later, in the car, Tom brought up the issue of her anosognosia. It explained why he had noticed her fidgeting before, even though she hadn’t. “I thought about telling you when it first started,” he said, “but you didn’t seem all that open to hearing about it. And I can’t say I blame you. Do you want me to tell you when you’re doing it, from now on? Or if it gets worse?”
Mara thought about the wind-sock-looking woman she’d seen online, the one with the CAG of 46. Who would want to know they looked like that? She shook her head. “No,” she said.
The rest of the details of that first appointment, the other five or more hours of discussions and prodding and nodding and note taking by various professionals whose names and faces were lost to her now, she didn’t recall. She didn’t remember much about the second appointment, either, a month later, when they went back for the blood test.
But she remembered every detail of the third appointment, when they met briefly with Betty and Dr. Thiry to hear the results. The appointment started and ended with a number:
Forty-eight.
Her CAG score.
Forty-eight.
48.
Four, eight.
Dr. Thiry handed the paper to her and Mara held it for only a second before dropping it like she’d been stung. She squeezed her eyes shut and told herself she would never again look at that number without feeling bone-splitting rage. She would avoid the winter weather report. She would ignore her birthday the year after forty-seven, if she even got that far. She opened her eyes and realized, from the expressions on the others’ faces, that she’d been saying it all out loud.
She tried to stand, to leave the room, but she was suddenly unable to support her own weight. Tom stood quickly and reached for her, helping her up. Wrapping his arms around her, he pressed his cheek, his chest, his legs, the entire length of his body tight against hers as he kissed her cheeks, her eyes, her hair and told her he loved her. She wasn’t sure how long they stood that way.
After a while, Tom turned and spoke quietly to Betty and Dr. Thiry and they left the room, but he didn’t move, and Mara couldn’t. She wasn’t sure how he got her from the office to the car but she imagined he must have carried her most of the way, or at least supported the majority of her weight. They cried all the way home, she remembered that, squeezing each other’s hands so tightly they both lost feeling and had to release their grip and open and shut their hands a few times to get the feeling back before grasping on to each other again.
When they were home, they pushed through the garage door into the family room and collapsed together on the couch, too spent to make it one step farther. They lay there, a mass of tangled arms and legs and tears, until well past dark. Finally, Tom carried her into their room, helped her put on a nightgown and slide under the covers. Stripping off everything but his boxers, he climbed in beside her. He wrapped his arms around her, draped one of his legs over both of hers, buried his wet face in the back of her neck and rocked them both to sleep.
The rest of the week went by in a blur, although there were parts of it that stood out: Neerja’s keening wail when Tom gave them the news; her parents taking Laks out of the house the night Those Ladies came over; Steph cursing a blue streak and Gina sobbing, then getting right to work organizing a schedule for people at the firm to bring meals for the next several weeks; other friends (former friends, now) coming once, looking pale at Tom’s description of what was to come and then disappearing for good.
Her parents were a constant presence that week, of course, her father returning to the house every half hour with more groceries, her mother in the kitchen, cooking, despite Gina’s gentle reminders that she had assigned the night’s meal to someone else already. Mara remembered sitting in the living room one night with her mother, Steph and Gina, having drinks and talking quietly while Tom and Pori tucked Laks in. Mara told the other women she wasn’t sure why she was in such shock. She’d known for some time, intellectually, that there could only be one explanation for her symptoms. She’d known, logically, that this would be the result. Gina nodded and Neerja clucked in sympathy while Steph poured them all another drink and said, “I guess intellect and logic don’t know shit about being diagnosed with incurable diseases.”
12.
Mara
Mara left the sliding glass doors and took her seat at the kitchen table, opening her laptop. The computer’s clock read twofifteen in the morning, over two hours since she’d crept out of Tom’s bed and into Laks’s. She shook her head, amazed at how upended her sleep cycle had become since her diagnosis. Constantly worried about what she might face the next month, or week, she hadn’t slept a full night in over a year. Nights like this were common now, the rest of the house sound asleep while Mara sat in the dark kitchen, reliving. Worrying. Planning.
She lifted her laptop and peeled off the sticky note she’d hidden on its underside earlier: her list of people to say goodbye to, things to accomplish in the next five days. With a pen, she struck through the names of two McGill friends she had called after lunch, using the pretense of updating her contacts list. She also crossed out the name of one of her closest mom friends from Laks’s school, whom she had e-mailed before Laks arrived home. The e-mail began with a fabricated question about the school’s upcoming Field Day before moving into the thank-you-for-your-friendship paragraph Mara had rewritten four times until she was satisfied it didn’t sound suspicious. Not bad progress, she told herself. She’d chickened out on the forum, but she still had time. She stuck the note back onto the bottom of her laptop, opened her Internet browser and clicked the forum open, scanning the entries that had been posted since the last time she had been on. She smiled to see MotorCity’s post about considering her like a sister, and smiled wider when she saw how many people had chimed in to offer their support during his final days with his little man. She wasn’t religious, but she closed her eyes and made a fervent wish into the atmosphere that her friend would be okay after the boy moved home. Thank goodness he had his own new baby to look forward to. While she was at it, she added a plea that Dr. Thiry’s staff would call tomorrow and practically laugh at her notion that one incidence of incontinence meant anything.
Her wish on its way into the atmosphere, she opened the HD research website she had bookmarked four years ago and reached for a legal pad and a pen to make notes. In the first few months after her diagnosis, she had scoured the site every day, thrilled to read about the various research teams around the world who were making “substantial progress” or receiving “significant new funding” to support their quest to discover the cause and cure of the disorder.
Several times, she’d caught Tom doing the same, though he always denied it, claiming to be looking up something about a patient and never adequately explaining why he felt the need to snap his laptop closed before she could see the screen. She hadn’t caught him in some time, and she herself had given it up. The “positive starts” and “exciting possibilities” never led to anything conclusive, and after a while, it felt like searching for money under her pillow in a house that didn’t believe in the tooth fairy. It had been ages since she’d opened the site.
Now, buoyed by the news she hoped to hear on the phone the next day, she held her pen over the pad and clicked it a few times, a NASCAR note-taker revving up her engine, ready to record details about the latest breakthroughs so she could tell Tom all about them in the morning, make a different plan for how to spend her birthday. She read through the headlines on the home page, clicking through to scour the details of each animal model study that had recently been wrapped up or was currently in progress, each patient trial offering hope.
/> After twenty minutes, she gave her pen a final anemic click before letting it fall to the table.
There was nothing.
There had been plenty of effort since her last visit—pages’ and pages’ worth—but nothing to show for it. A drug company had discontinued its long-standing research study after “disappointing results” were found in animal models. A lab had delayed the kickoff of its work to examine how neurons die in HD patients, with the first phase now scheduled for completion in eighteen months, not six. The end product of the project was, the team hoped, development of a drug that could slow the progression. Not a cure, then, just a governor. And not for three phases, each six to eighteen months long. There would be no elixir at Mara’s pharmacy anytime soon.
She should have known. The answers to the disease, the secret to how it worked, how it could be stopped, were as elusive as ever. She had been lured once again into checking under the pillow. All she’d found was her rotten, bloody tooth, no shiny coins in its place.
Mara looked from her laptop to the phone on the counter and wished she hadn’t left the message for Dr. Thiry’s clinic. They wouldn’t dare confirm her grocery store incident was the beginning of the end. No way would they predict impending doom based on one event.
But neither would they be able to promise her the incident wasn’t the start of her slide down the slippery slope toward her ultimate demise. That it wasn’t the signal of more humiliation to come, of greater decline. That she still had plenty of time before she lost enough physical control that she would no longer be able to command her own exit. That she could wait another year, or even another month. The only thing talking to them would accomplish for certain was having more people know about her embarrassing public spectacle.
When the clinic returned her call the next day, she’d let the phone ring.
Five Days Left Page 8