Five Days Left (20 page)

Mara

Mara waited on the porch for the school bus to arrive. There would be no standing at the curb anymore.

“Laks, sweetie,” she said when the girl reached her. Mara bent unsteadily, bringing her face to the level of her daughter’s so she could look in the girl’s eyes. “I can’t tell you how sorry I am about what happened today.”

“It’s okay, Mama.” The girl studied her shoes. “Can I have a snack?”

Mara’s breath came easily for the first time in hours. “Sure.”

“I told you,” Tom said when he arrived home and Mara relayed Laks’s behavior after school. Mara had called him right after Harry left, sobbing, telling him she was certain Laks would never speak to her again after what had happened. “Nonsense,” he said. “She’s far more resilient than you’ve ever given her credit for.”

But later, Mara was carrying clean bath towels to Laks’s linen closet—only two at a time, since carrying a large pile of laundry had become too difficult—and Tom, she thought, was on the couch, reading a magazine. But as she neared her daughter’s doorway, she heard his voice asking, “Laks? What’s wrong?”

Mara peeked through the small opening between the door and the
frame. The child was facedown, sobbing into her pillow. Her father was sitting on her bed, stroking her hair.

“Laks, talk to me,” he said.

He was answered with more sobs, and Mara watched as he studied the crease of his pants. After a moment, he asked, “Is this about what happened today at school?”

Mara took a sharp breath as the dark head on the pillow moved up and down.

“I see. I want you to talk to me about it. When you have big feelings, it’s best to get them out. Not keep them inside.”

Laks turned, her face scrunched and red with anger. “I am not friends with Lisa,” she sobbed. “Anymore. I am never talking to her again.”

“Oh!” he said, and Mara shared the relief she heard in his voice. “This is about Lisa? What happened with Lisa?”

“She said”—Laks paused to catch her breath—“mean things,” she choked, before breaking into more sobs.

“What mean things?”

The small face turned to the wall.

“Lakshmi. Answer me. What mean things?”

Still facing the wall, she mumbled, “She called Mama a ‘drunken lady.’”

“Drunken lady?” Tom said, and Mara heard the strain in his voice as he tried to make it light, forcing a half laugh. A feeling of dread crept into her chest. “Well, that’s a silly name,” he said, “and a strange one for a kindergartner to come up with, but I don’t know if she meant it to be mean—”

Laks looked sharply at her father. “She got it from the fourth graders. And she meant it mean.” And in an instant, her sharp look collapsed into a pained one and fresh tears spilled onto her cheeks. Her tiny shoulders started to shake and her voice took on the choking, gasping sound of someone trying to fit words around sobs. “They all. Said it,” she panted. “Everyone but Susan.”

She took another breath. “She’s the only one. I’m still friends with.” She paused again to let more sobs out. “And they all. Meant it mean. The big kids. Too.” She gulped in more air and sniffed. “They all started calling her that. ‘Drunken lady.’ Because she was. Walking. All funny,” she panted. “And the big kids said. She looked. Drunk. And I asked. Teacher. What ‘drunk’ means and she. Said it’s. Bad.” The little body convulsed and she threw her arms around her father’s waist, burying her head in his lap.

Drunk. Mara looked down; the towels she was holding were moving back and forth, up and down. She hadn’t noticed her arms moving.

Anosognosia
. The complete lack of awareness some HD patients have about the way their bodies are moving. She remembered Dr. Misner explaining it to her. Then Tom. Then Dr. Thiry.

She’d heard of HD patients being arrested for public drunkenness because of their awkward, listing, bent-over gait and arguing that they were walking just fine—which never helped their case with the police. And now Mara had done the same. Only instead of embarrassing herself in front of the police, she had humiliated her daughter in front of a hallway full of children. Had it only started today, at the school, she wondered, or had she been walking strangely for longer?

Suddenly it hit her: the boy and his mother in the grocery store had looked at her like there was something wrong with her—more, even, than the fact she’d wet herself. Harry had fairly jumped out of his car and sprinted to her after he watched her take a few steps at the car repair shop. And the salesgirl at the clothing store seemed to be staring at her, too. She had written it off at the time—she was acting oddly herself at each of those times—and assumed everyone’s puzzled looks were a reaction to that.

Now she knew what all the gawking was about. She’d been walking like a drunk all week long.

Only her family and friends had acted like nothing had changed. She knew she was supposed to love them for that, but the sound and sight of her daughter bawling made it difficult not to feel the opposite.

“I’m so sorry,” Tom said to Laks. “And Mama is so sorry. But it’s not her fault. Remember when Mama and I told you about how she wasn’t feeling well? How she had something called Huntington’s, and that’s why she stopped working? That’s why she used to be a little angry sometimes, until she started taking medicine? Remember that? Remember how we talked about how when people have a disease, they can’t help it? So when the disease makes them act in ways we might not really like all that much, we need to try hard not to be mad at them, because it’s the disease’s fault, and not theirs? Do you remember all of that?”

They hadn’t said much to Laks about Mara’s condition. It wouldn’t be unusual if they decided to keep it from her completely, given her age, the social worker at Dr. Thiry’s clinic had told them. But that’s not how they did things in their family, Mara said. They were straight shooters. Tell-it-like-it-is types. The kind of parents who referred to body parts by their real names. So, last summer, when Laks, then four, asked her mother, “Why do you take all those pills every morning?” they sat her down and told her why.

Against Mara’s wishes, Tom had added the piece about being understanding, not being upset with Mara for acting out, dropping things, falling. Mara wanted the girl to be able to express anger, frustration, at her mother, if that’s what she was feeling. Burying it because of some promise she’d made to her father was the exact opposite of what Mara wanted for her daughter. It was lucky Tom hadn’t been in the hallway at school today, Mara thought; Laks might have felt pressured to walk Mara out to the curb even though what she’d really wanted was to pretend she didn’t know her.

Laks nodded. “I remember.”

“Good,” Tom said, running a hand over the top of her head. “So you remember we need to be sure not to be mad at Mama for what happened, since it’s not her fault, right?” Laks didn’t answer. “Right, Lakshmi?” Tom said, his voice stern now, instructing her to agree.

But the girl didn’t nod in agreement. Mara didn’t blame her.

And Tom didn’t push again, but sat quietly, letting her cry in his lap while he rubbed the shoulders that rose jerkily up and down with sobs. And now Mara saw the glistening trail on her husband’s cheek. She raised a hand to her mouth to cover her own sob and stepped sideways, leaning against the wall as the towels slid from her hand and dropped to the floor.

She had spent hours ruminating with worry that one day her condition might embarrass her daughter. That dealing with the effects of her illness, helping their daughter try to deal with it, might become too much for her husband. But she had not, in any of those hours, come close to realizing how she would feel if either of those things actually came true.

She heard Laks’s voice, loud now, and sharp. “I don’t want her to come to school anymore, Daddy!”

Mara felt a momentary flash of pride in her daughter for expressing how she felt before a vise grip locked down on her chest. She could feel the pain in her child’s voice, could picture her tiny face screwed up with dismay at the words she heard herself say about her own mother. “I don’t want her to stand at the curb, either. I don’t even want her waiting on the porch! I don’t want the kids making fun of her. Or me.”

“Now, hold on a second,” Tom said. “I don’t want to hear you say—”

“I want her to stay in the house forever and never come out again!”

Mara braced herself weakly against the wall. As painful as it was to think of Laks having to hide her true feelings about her mother’s illness, it was excruciating to hear her say them out loud. A scorching pain seared from Mara’s ears to her feet, filling her, clawing into her organs, wrapping around her bones, pushing against the inside of her skin. And then she felt hollow. Her legs threatened to give out and she thrust her shoulders up high, forcing her body to stay upright. Taking deep, slow breaths, she begged her body not to betray her this once.

“There, there,” Tom was saying now. “There, there,” he said again. And then something low and stern, but gentle.

“You don’t understand me, Daddy,” she heard the small voice say, and he responded, low and stern and gentle again.

And Mara stopped hearing Laks’s words, and Tom’s, and was only vaguely aware of his low murmurs, her high-pitched protests, until finally their voices faded into nothing and she heard nothing and saw nothing but this:

Tom and Laks are driving silently. She’s sullen; he’s steeling himself, trying to ignore her. They park, enter the building, sign in. Laks covers her ears as the buzzer sounds and the interior doors open. It’s an ugly, annoying sound and she has grown to despise it. They walk to the end of the hallway, into the common room. The nurses call it a living room but come on, Laks thinks, who are they trying to kid?

Mara sits by the window. Staring, but not seeing. An old, worn blanket covers her, although it’s ninety degrees outside.

Laks blanches. The smell of the place turns her stomach. But she has learned that complaining about it to her father will land her in her room for the afternoon. When her dad’s not looking, she covers her nose with a hand.

Tom walks to Mara and gently picks up one of her hands, kisses the top of her head. Her hair is lifeless, unbrushed. Her scalp is dry. He ignores this, kisses her anyway.

Watching his lips touch her mother’s head makes Laks retch. She’s careful to do it soundlessly. She flops onto a chair, folds her arms across her chest and pouts. This is stupid. She doesn’t want to be here. She wants to be on the Internet, on the phone, texting her friends. Hell, even homework would be better than this.

She has no use for this woman. She has already said goodbye to her mother, in her mind. The mother she used to have. The mother who read to her, pushed her on the swing, put little notes in her school lunches each day: “I will always love you. xox, Mama.” The mother she used to look up to, brag to friends about. Was excited to see every day as the bus drove her closer to home.

She takes in her dad’s profile and her mouth turns downward in disgust. He used to be so handsome, so alive. Now his hair has gone completely gray. His
face is too thin and it’s always drawn tight. The blue in his eyes has faded—she didn’t think that was possible, but she swore it was true. His mouth is permanently set in a straight, serious line. Except for here, when he forces his lips to curl up and pretends there’s no place he’d rather be. Nothing he’d rather be doing than chatting mindlessly to this woman who isn’t even listening, who can’t even understand what he’s saying.

She used to admire him for this. His loyalty. His faithfulness.

Now she thinks he’s pathetic.

She hates herself for thinking this way about him, as much as she hates herself for thinking this way about her mother. But what’s she supposed to think? She wants a life. She wants a dad whose eyes haven’t gone out.

Why won’t the woman die already?

In a second, Mara was in the guest bathroom near the kitchen, kneeling in front of the toilet as everything she had eaten for dinner came out in a rush. She heaved several more times until finally there was nothing left. She splashed cold water on her face and looked sternly at her reflection in the mirror. Then she walked resolutely to the kitchen, picked up the phone and hit the speed dial for Dr. Thiry’s office. When the answering service picked up, she announced her name and asked to leave a message for the doctor.

“I’m not sleeping.”

Mara

In the living room, Tom sat at the end of the couch, his laptop open on his knee, an intense look on his face. Mara cleared her throat and he snapped the computer shut and set it on the coffee table. “Oh, there you are,” he said, patting the space beside him.

“There’s no new research,” she said as she sat. “I checked last night. And again this morning.”

“What are you talking about?”

She gave him a daring look and reached for his laptop. As she expected, he grabbed her hand before she could lift the screen and see what site he’d been on. She smiled victoriously. “You don’t think I know about this nightly obsession of yours?”

He regarded her blandly, still pretending he wasn’t following. She would get back to that, she decided. “Why didn’t you tell me I look like a drunk when I walk?”

“What? Oh, did you overhear—?”

“Difficult not to, when the girl was bawling, ‘Don’t let Mama ever leave the house again!’”

Tom grimaced. “I’m so sorry—”

“Don’t. You’ve got to be sick of saying that. I know I’m sick of hearing you say it. That’s your hundredth ‘I’m so sorry’ in one night. Why did
you let me leave the house, walking like that? Did you tell Laks not to say anything about it? Because normally she isn’t gentle.”

“Laks probably didn’t realize it,” he said. “You’re Mama. It’s how Mama walks. It was only when—”

“Only when she became the laughingstock of Plano Parkway Elementary that she figured out Mama walks like a drunk?” He shook his head but she didn’t let him speak. “Why didn’t you tell me?” she asked again, louder.

He frowned. “You told me not to.”

She started to argue, and then she remembered: the wind-sock woman. The day Dr. Thiry explained anosognosia, she had instructed Tom not to tell her when she was moving strangely. She hadn’t wanted to know. “Oh.”

She pointed to the laptop he’d closed so quickly. “Seriously,” she said. “Aren’t you sick of it?”

“Of what?”

It was no surprise he was acting obtuse about it; she’d stopped expecting him to act otherwise.

“Sick of scouring the Internet for news,” she said. “Sick of crossing your fingers that there’ll be a new drug today, a new trial, when there wasn’t one yesterday. Sick of hoping for a new ending to this story, hoping for that alleged cure that’s always ‘just around the corner’ but in reality is still in the next town over. The next state. The next continent. The most brilliant minds in research still can’t say how the disease even works—they are not ‘just around the corner’ from figuring out how to stop it. Aren’t you sick of holding your breath, opening your laptop and telling yourself, ‘Maybe this time’?”

He lifted a shoulder. “I’m not all that anxious about the research. They’re making advances. And we’ve got time.”

“The hell we do. I’ve gone from Super Mom to ‘Don’t Let Mom Leave the House’ in two months flat.” She snapped her fingers. “Maybe the lucky ones with CAGs in the low forties have time. Not me.”

“Not this again, Mara,” he said. His voice was strained; she could tell
he was trying to control his frustration. “I’ve told you, Dr. Thiry’s told you, every member of his staff has now told you—there’s no proof there’s a correlation between CAG score and speed of progression,” he said.

“Well, I’ve read plenty of things online about people with high CAGs deteriorating more quickly than—”

He held up a hand. “Please. Stop letting yourself get carried away based on random anecdata from the Internet. I think we need to rely on the medical profession—”

“Ha!” she scoffed. “You want me to rely on the medical profession? You mean the profession that hasn’t discovered one new clue about this disease since the day I was diagnosed? I’d be just as safe to rely on Laks’s Magic Eight-Ball.”

He didn’t respond, and they sat silently for a few moments. He was thinking of ways to calm her down, she knew, and before the knowledge could anger her, she took a deep breath and counted to three before letting it out. It would be nicer to avoid an argument. “Honestly, though, Tom,” she said quietly, “aren’t you sick of pretending you’re okay with the shitty future you’ve been handed?”

“But I am okay with it,” he said gently, lifting one of her hands in his. “I mean, sure, I wish things were different for your sake, but—”

“Oh, come on,” she said, coaxing, trying to get him to confess. “Don’t give me that old line of BS again. You wish it were different for your sake, too.”

“I don’t.”

“Of course you do,” she said, nodding slowly, indicating he should follow suit and nod in agreement. “You wish you hadn’t lost so big in the wife-choosing lottery.”

He recoiled, shocked and angry, as though she had slapped him. “Mara! Of course I don’t—”

“You do. I know you do. You wish you didn’t have to pick up all the slack all the time. You wish you weren’t saddled with this pathetic—”

He jumped up, wrenching his hand from hers, and stood, feet planted wide, hands in fists at his sides. “Don’t tell me what I wish. Don’t assume you know what I wish, what I think, how I feel—”

“Well, I can guess,” she said, “since I’m going through the same thing. And I know I’d rather have it just finish me off already, be over with now, rather than drag out for years to come. I know how much better off Laks would be with me in an urn on the mantel, rather than as an object of ridicule in the school hallways. I know how much better life would be for you with me out of the way, and room for some young, healthy bombshell to sweep in and take my place. Someone you can look at with pride rather than pity. And if I know those things with certainty, then I know you know them, too—”

“Goddamn it, Mara!” She flinched. He never swore or yelled. She was the foulmouthed screamer of the family. “What did I just say? You don’t know what I know! You don’t know what Laks knows! Quit trying to—”

“Fine. I know what
I
know. And what
I
know is that you’d be better off—”

“For Christ’s sake!” He was pacing now. His face was red and she could see him clenching and opening his fists, trying to control his anger. He was failing. “You’re wrong. When are you going to get that? You’re flat-out wrong. We would
not
be better off—”

“Well, forgive me if that’s a little hard to believe.” She waved a hand, indicating his pacing, his red face, his clenched fists. “You’re not in the best position to tell me you’re doing just fine.”

“I get to be upset, Mara, just like you do. I get to be enraged. About what HD is doing to my wife, to my daughter, to our family. I get to hate it as much as you do. So does Laks. I get to pace and swear and get red in the face and shout about it all I want. We all do. Laks and I haven’t done a lot of it so far, and tonight may signal a change, or it may be a onetime thing. I don’t know, and I don’t care. Because getting upset is perfectly
normal when things are upsetting! And I want her to know that. But just because we might be upset now and then doesn’t mean we can’t deal with it, or don’t want to.”

He sat again and took one of her hands in both of his. “Think about it, love,” he said softly, pleading, all anger gone from his tone now. “I’m a doctor. If I didn’t want anything to do with sick people, I wouldn’t have become one.”

“You’re a dermatologist,” she said acidly. “It’s hardly oncology.”

He started to respond, but stopped himself. He took a measured breath, then raised her hand to his lips and pressed it there. It made her resent him, how he had managed to force himself to regain his calm so quickly, how able he was to pull himself away from the emotional brink like that, ignore her insult and try another tack to get them back on the right track. It was something she was no longer capable of doing.

Then again, she told herself, he wasn’t the one under assault. Who couldn’t manage to keep it together when they were only a witness to the destruction? You didn’t see people losing their shit when they watched war coverage on TV news. The only ones losing their shit were the ones actually in the goddamn war.

“Please don’t tell me we’d be better off without you around,” he said softly. “It’s simply not true. And it hurts me that you’d ever think it. It would hurt Laks, too, I think—”

“Fine.” She shrugged. “I’ll leave you two out of it.
I’d
be better off if this ended now. I’d be better off not having to stick around any longer, knowing I’m making my child the brunt of jokes at school, knowing I’m dragging down my husband—”

He didn’t jump this time, but he dropped her hand, let out an annoyed groan and stood. He took a step to the other side of the coffee table and flopped into one of the armchairs that faced the couch. From the expression on his face, his brief stint at controlling his anger was officially over. She couldn’t help feeling a small flash of satisfaction about that.

“What?” she said. “Why are you angry now? I wasn’t talking about what was best for you two. I was saying what
I
want—”

“Because this isn’t all about you! It isn’t all about what you want, or how you feel!” He leaned forward. “Did you ever think of that? Has that ever, even once in the past four years, occurred to you?” He spread his hands. “You’ve read the websites, the brochures from Thiry’s office. Thirty thousand people in the USA
have HD
. A far greater number
are
affected by HD
. You might get to claim the gene but you do not get to claim the goddamn disease. Sure, HD is in your body. But it’s in this family. And you are one of three people in this family. One of two people in this marriage. And yes, you’re the one with HD and I will never pretend I know how it feels to be the one with the disease. But I’m the one who’s
married to
the woman with HD. And that little girl”—he stuck his arm out toward Laks’s room—“is the
daughter
of the woman with HD. And we love that woman. More than anything.

“I know this disease has knocked the crap out of you. But you seem to forget it’s knocked the crap out of us, too. You seem to forget that as much as you need us to help you get through this, we need you to help us get through it. I need the love and comfort of my wife. Laks needs those things from her mother. We need you here, with us. We would not be better off with you in a goddamn box on the goddamn mantel. Don’t ever say that again!”

“Well, sure,” Mara said, rolling her eyes, “that’s what you have to say. But in your heart—”

“For fuck’s sake, Mara!” He was on his feet again. “Stop it!”

She watched, her mouth open, as he walked toward their room and disappeared inside. Moments later, he was back with her pillow, nightgown and the comforter from their bed. “You want me to stop treating you with kid gloves?” he asked. “You want me to stop feeling sorry for you and cutting you slack and doting too much?” he choked.

He tossed the items on the end of the couch. “This is what I’d do if you didn’t have HD and you’d spent the last fifteen minutes telling me I
don’t love you enough to want to be with you for every last fucking minute I can be, no matter what that means. This is what I’d do if you were perfectly healthy and accused me of preferring the easy route over looking after the love of my life. This is what I’d do if you’d never been diagnosed, if we’d never mentioned the word ‘Huntington’s’ in this house, and you confessed to me that you want out because, evidently, there are some downsides of living that, for you, outweigh the upside of being with me.”

He turned, walked back to their room and slammed the door behind him.

Mara looked dumbly from the pillow and comforter on the floor to the closed bedroom door and back again.

Good strategy, she told herself wryly—piss him off so much that maybe now he’ll be happy when you’re gone.

She crossed her arms and tried to scoff, but the noise came out as a wounded moan and tears clouded her view of the closed door between them.

She sat in the dark for over an hour, trying to work up the courage to go to him. She couldn’t sleep in the living room, not when they had so few nights left together. He would never forgive himself, after, if she stayed on the couch because of his command. Finally, she stood and gathered the things he’d tossed to the couch. At their door, she paused, then pushed it one tentative inch, and another, until she was able to squeeze through. Squinting, she made out his form in the dark. He was lying on his back, head resting on folded arms, eyes open—and on her.

“I’d like to sleep in here, if it’s okay with you,” she said softly, her voice thin.

He didn’t respond.

It was better than a no, she decided, and climbed in beside him. She edged toward him and put a tentative hand on his thigh. He remained on his back, staring at the ceiling now, not acknowledging her.

“I’m sorry,” she whispered.

Still no response. She turned toward him and studied the firm line of his mouth, the way his jaw clenched as though he were working to keep himself from speaking. Or crying? She drew a quick breath in as she saw his tears. She had hurt him.

The thought made her own eyes sting, and for the first time she allowed herself to consider that the so-called I’m-fine-with-your-HD spiel (her name for it) he’d given her just now in the living room, the same one he’d given her so many times since the diagnosis, might not be a spiel at all, but the truth. Maybe he did want to look after her. Maybe it truly hurt him to think she didn’t believe it. Maybe he really did want her with him, not out of the way. Maybe, for the second time in as many days, she had been wrong to leave the message she’d left for Dr. Thiry.

“I’m sorry,” she said again. “Tom, please talk to me.”

“It breaks my heart when you talk like that,” he whispered, still staring overhead, “like you don’t believe me when I say I want to be with you to the bitter end.”

“Oh, Tom.” Gently, she turned his chin to make him face her. His eyes had overflowed now and her lips parted in surprise but he shrugged unapologetically. Mara swiped a thumb under each of his eyes, then pressed it to her lips.

“I’m not going to be able to drive anymore,” she whispered. “You’ll be stuck with all the errands.”

“I don’t care,” he whispered back. He locked his eyes resolutely on hers, daring her to tell him he didn’t mean it with everything in his body.