Souvenir (22 page)

Thirty-four

M
EG ARRIVED HOME
S
UNDAY NIGHT FEELING AS IF SHE’D SPENT HER DAYS
mildly overdosed with Valium. She could not recall whole chunks of time from the night before, just that she’d ended up parked in the lot of a seedy motel off I-75 after almost causing a head-on collision in the middle of the night. She’d slept curled up in the back of the Lexus, waking to the sound of eighteen-wheelers chugging to life around her. Today was lost to her too, just a haze of images and road noise. She hardly knew how she found her way back home.

When she came inside, she was glad to find Savannah preoccupied and closed off in her bedroom, talking on the phone. She was glad when Brian gave no more than passing interest in her vague story about a long, difficult delivery keeping her at the hospital for the past day and a half. Or she
thought
she was glad—no: she
was
, because she wouldn’t have had an answer for him if he’d looked at her closely and offered a concerned
What’s wrong?
She was glad not to have to try to ad-lib, even if his noticing might have brought her a small measure of comfort. He did manage to notice her limp, but she explained it away with her blister excuse. After telling her there was leftover pizza in the fridge, Brian went to his office to play poker online. Meg drank a tall glass of water and then went to their room and dropped into bed.

At first, sleep refused to come. She kept thinking of how little she seemed to matter to these two people who were supposed to be closer to her than anyone, ever. Here she was, facing the biggest crisis of her life, and they went about their business as they always did. Unless they needed her to
do
something for them, she was inconsequential. A fixture. A convenience. For all they knew, she could have spent last night turning tricks or running small arms to Key Largo. It shouldn’t matter that she didn’t invite their attention, didn’t know how she would have dealt with it. They were her
family
; they should be able to smell her distress.

After a while she tired of her self-pity and lay listening to the steady shush of cool air through the vents. Finally, she fell into a heavy, blank sleep. All night she was dreamless, as if the knowledge of having ALS had paralyzed her brain.

M
ONDAY MORNING SHE WOKE DISORIENTED—FORGOT, AT FIRST, THAT FATE
had drawn a bead on her like an assassin’s rifle. The sound of the shower running, the energized chirping of a wren outside the bedroom window, the golden glow of morning sunlight all proclaimed an ordinary weekday. Her amnesia didn’t last, though; memory returned like a slap in the face. She had to force herself to get up and get dressed.

Behaving as normally as she could manage, she saw Savannah and Brian off, drank two cups of strong black coffee, and slowly, slowly her focus returned. The cloud was lifting. Not completely, but high enough for her to see that she would not escape her bad news by running to any man, or any place.

She might hope for a miracle, but she didn’t expect one. And so, if she was going to
live
the rest of her life, she had better get started.

She made some calls to set up her day, then went to the bookstore, returning with a blank book covered in rugged leather. Durable, because she needed it to be able to last. Durable, the way she was not.

When she got back, she tucked herself into her favorite seat on the screened porch and began to write.

Monday, May 1, 2006

Savannah, this is for you. This morning my doctor confirmed his diagnosis: I have something called ALS, or Lou Gehrig’s disease. I’ll tell you about it—not sure when; before you read this, though. This is for you to have when I’m gone. We’ll talk a lot before then, but the words, they won’t stay with you for long. You’ll lose them; they’ll disintegrate over time. I know because that’s how it’s been for me since Grandma Anna died. A few weeks ago, Grandpa gave me some notebooks she’d written in, like diaries, and they’re helping me get hold of important things from my past. You’ll need something like that, as much or maybe more than I need to provide it for you—so I’m writing this journal for both of us.

What is ALS? A neurodegenerative muscular disease. It’s irreversible, and fatal. When I think of saying those two words to you, it makes me cry….

She paused, and when the welling of tears subsided, she continued.

No child should ever have to hear such news. I don’t know
why
I got ALS; you can’t “catch” it and it’s not inherited (except in really rare cases, but not mine, so don’t fear for yourself). It just…happens. I’ve learned, in the years since I started studying medicine, that there aren’t always answers to “Why?” especially when it comes to unexpected illness and death. I hope you won’t spend your time battling that question, and hope this journal helps you accept what
is.
Manisha can give you good advice about how to do this. I wish I’d taken more of her advice over the years.

Anyway, ALS paralyzes all the muscles in the body, even, eventually, the ones that make you breathe, but it doesn’t affect the mind at all. What gets set down here in this journal will be written with a clear head, or as clear a head as I’ve ever had, anyway.

I suppose I want, with this journal, to pass on some of my wisdom to you…give you advice on how to grow into a confident woman who makes good decisions, who doesn’t let anyone determine the course of her life. I made mistakes,
big
ones. I know this now, but it’s too late for me to do very much about them. I want to share the lessons, though, and just…tell you things…. And yes, it makes merest a little easier knowing you’ll have a part of me to…visit, I guess you could say, from time to time. Maybe share with your own children someday.

She set the pen down, her hand fatigued already. Dr. Bolin told her this might be her luck—that her initial onset of symptoms had been gradual, but now it appeared she was in an “acceleration period.” The disease was as variable as the people who contracted it: male and female, every skin color, almost any age, though the very young weren’t usually afflicted. Her symptoms could worsen quickly, then stabilize again—even hit a long-term holding pattern. Or not. Because ALS was not one precise disease but rather a tight spectrum of clinically similar conditions, a very few ALS patients had versions, as Bolin put it, that defied the usual prognoses. He knew of a rare few who’d lived a decade or more after diagnosis. Most, though—seventy-five percent—were dead inside of five years, some dropping like flies from within weeks of a late diagnosis, to a few dragging themselves to the five-year-finish. If her symptoms accelerated even faster than they appeared to be doing now, she could be in a wheelchair in a matter of weeks. She could lose the use of her hand at any time.

She picked up the pen and continued, stubbornly.

I’m meeting Manisha later today to tell her my bad news. I’ll have to quit practicing medicine pretty much right away. There’s too much risk for the patients, for the babies. My right hand and arm are the main problems at the moment, and if I let myself admit it—and I might as well, here—my right leg too. Now that I know what to blame, I can’t make any more excuses about why I dropped something or caught my toe going up a curb or stumbled or what have you. Now the knowledge lives with me full time, like a nagging mother-in-law.

Should she say that?
Nagging mother-in-law?
Savannah might think she intended to paint Shelly with that brush. Well, it was written, and she didn’t want to start over. The best journal would be an honest, uncensored one. Mostly uncensored. She wouldn’t write anything about her issues with Brian, for example, nothing that could embarrass him or embarrass Savannah. She liked Shelly just fine, and would make sure to say so; Savannah would realize the expression was just a figure of speech. Journaling wasn’t so easy when you were writing for others—she was determined, though, to give Savannah this gift, imperfect though it might be. She had little else of real value to leave behind.

I don’t know how I’m going to handle leaving my practice, leaving the job that has been so much a part of who I am—the career I worked so hard for. If I had known it was going to end so abruptly, I never would have bothered; I would have spent the time that I gave to classes and homework and training and patients with you, instead.

Except that makes it sound like I’m sorry to be a doctor, and I’m not. I only wish I could have the time back, knowing what I know now. I wish I could have had both: my career and more time with you. Well, as long as I’m wishing, I wish I didn’t have ALS and had a future to share with you, like I was counting on. It just goes to show that the future doesn’t exist. All we truly have is now.

Her fingers were so weakened from her effort that she couldn’t hold the pen up straight; she put it aside and tucked the journal underneath her, beneath the cushion, where she could access it often without anyone noticing. As if they paid attention.

She went to her room and put her hair back with a clip her tired hand could barely work. She was meeting Manisha for lunch, then driving over to Silver Springs to meet one of Bolin’s other patients, a woman named Lana Mathews. Lana was thirty-five and the mother of four kids, all under age nine. It broke Meg’s heart just thinking about the poor woman. When she called this morning, to see if they might meet in order to help her begin dealing with her own diagnosis—a call that had taken nothing short of five tries before she made herself go through with it—all she’d known was the woman’s name. Lana’s sister Penny, who volunteered as caretaker, had answered the phone; she filled in the details and invited Meg over. “Come on over and meet her. It ain’t so bad as you might think,” Penny said.

Thirty-five

“G
ET ANOTHER OPINION
,” M
ANISHA TOLD
M
EG OVER THEIR
A
SIAN CHICKEN
salads.

“I
did
—three doctors now, one who
specializes
in neuromuscular diseases.”

Manisha waved her fork. “See more! And don’t stop there. There are other things—Lyme disease! You are just having Lyme disease! I will put you on that antibiotic, do a three-month trial, check your symptoms after—”

“Manisha.”

“What? Don’t lie down for this diagnosis!”

“First off, I have none of the other Lyme symptoms. Second, I’ve had every test—it’s ‘clinically definite.’ Bolin said this morning that they did not find
Borrelia burgdorferi
in my blood. I don’t have Lyme, and I don’t have some other thing; I have ALS.”

Manisha picked at the mandarin oranges in front of her, and Meg could tell she was trying to come up with a more convincing argument; that was Manisha, stubborn like her, but in a practical, caring way. In their years together as partners, Manisha had looked out for her the way Meg had always looked out for her sisters.

Manisha narrowed her eyes and said, “Tell me this: how do they know already? It can be many months, making this diagnosis.”

It was a good question, one Meg was sorry she could answer so easily. She said, “I was a lab rat for Bolin. Besides the usual tests, he did a new spinal fluid assay, looking for some just-discovered ALS biomarkers. And found them,” she added. “A good friend of mine would say it’s my fate to know already.”

“What friend? She is not knowing of what she speaks.”

Meg reached for her hand. “She is. I think there’s a reason I’m not a hard case to crack. Or maybe I’m just lucky in that way; less drama, less stress in dealing with ‘maybes.’ I hate being in limbo, so luckily I’m not.” She tried to keep her voice steady, but it wavered, and Manisha heard it.

Manisha bowed her head to hide her tears. “Oh Meg…no.” She sniffled, wiped her nose with her napkin. “What…what does Brian say?”

“I haven’t told him yet.”

“When?”

“Soon…. Honestly, I just don’t know. I can’t hide it for long, obviously. Not that he notices anything,” she added.

Manisha didn’t chide her for criticizing Brian, the way she would have any other time—as she had the few times when Meg, in a fit of annoyance or irritation, voiced a feeling instead of keeping it to herself, instead of wearing it like a hair shirt meant to remind her of her privileged life.
You married him for a reason
, Manisha might have said.
He is loving you in his own way
, she’d likely have added. Manisha, whose own marriage had been arranged, was long accustomed to such rationalizations. This time all she said was, “And Savannah—?”

“I’ll tell them. Soon.”

Manisha sat up straighter and sighed. “You will hire someone to care for you? Or maybe your sister Beth? She could come stay? I will do all I can. Please, Meg, you will just tell me what I can be doing to help.”

Meg had no answers. She didn’t know yet what she wanted to do, who she might hire or conscript. This kind of planning was beyond her just now, the reality of what her diagnosis meant still unforeseeable, like mist hiding the far banks of the River Styx. She still felt stunned, as if she’d been walking along a street and was sideswiped by a speeding truck. The disease was so variable, its timeline so fickle. The best she could do just now was put one foot in front of the other and trust she would get where she needed to go.

“I will tell you, Manisha. Thanks. Meantime, who do we know who might be ready to join the practice? I can be out of my office in a week or so.”

L
ANA
M
ATHEWS’S
S
ILVER
S
PRINGS HOME WAS NOT WHAT
M
EG EXPECTED.
She’d imagined a darkened sick-room atmosphere where the fully disabled Lana passed the hours watching TV or sleeping while her younger sister, thirty-three-year-old Penny, managed the household and the kids, taking time now and then to change the channel or the bedpan. What she found instead was the fully disabled Lana at dead center of chaotic everyday life with four young children.

“This here’s Colleen,” Penny said, introducing Meg to a skinny blond girl of about five, sitting cross-legged on the end of a hospital bed that had been parked near the living room windows. The view was of tiny houses just like the one she was in: three-bedroom, bath-and-a-half vinyl-sided tracts, all tan or cream or pale yellow or white. Newish pear and maple trees reached pitifully out of the scrubby soil, some of them surrounded by white plastic picket fencing, others by colorful plastic children’s toys—as Lana’s maple was. Two faded subcompact cars were parked in Lana’s narrow drive.

“Melissa and Ashleigh are the little ones you passed with Nicole, the tall one, on your way in. And this, of course, is Lana.”

Meg looked down at the woman in the bed and took her hand, glad to have years of medical training to fall back on. “Hi, Lana. I’m Meg Hamilton.” Lana’s hand was chilly and limp, despite the sunshine coming in through the windows, despite the day being warm enough for the girls to all be dressed in sleeveless shirts and shorts.

Lana, a blond woman with bright blue eyes who would have been very pretty not so long before, turned her head, perhaps a quarter of an inch, and made a barely perceptible nod. Her face was a mask of slack muscles, and her mouth hung open a bit, drool pooling at the corners.

“She don’t talk anymore,” Penny said, “but she listens just fine. Colleen was just reading her mama a story, wasn’t you?”

“
Hop on Pop
,” Colleen declared, holding up the book. “Then I’m gonna read
Goodnight Moon
—it’s Mama’s favorite, she use t’ read it t’ me every night.”

“Colleen reads real good—it’s the homeschooling, I swear it. And she’s right good company, and helpful too! Even helps with the messy jobs, if you catch my meaning.”

“Mama’s got t’ wear a diaper,” Colleen said cheerfully, “but it ain’t her fault. She got that famous baseball man’s disease.”

“Whyn’t you go round up your sisters for snack time, hmmm?” Penny shooed Colleen off the bed.

“Four girls,” Meg said, watching Colleen skip to the doorway, above which was a plaque that read
Got Jesus?
in white letters on a black background, and four shiny brass oval frames, each displaying a little girl’s face. “We had four in my family too—I have three sisters.”

“All blessings, these girls are,” Penny said. She smiled, and Meg had an idea of what Lana’s face would look like animated. “Colleen hangs around all the time, but it’s Nicole who does the most—she’s eight, and she watches the little ones for me right regular. She is an angel.”

“Where’s their dad?”

Penny took Meg’s elbow and steered her into the kitchen, telling Lana, “Be right back, hon; just gonna get juice for the girls.” In the kitchen, a narrow space remarkably free of clutter, save for the crayon drawings littering the refrigerator and cupboard doors, Penny said, “Rob, he was killed in a truck wreck right after little Melissa was born. You’ve never seen anybody keep things going like Lana did, even in her grief—right up till this thing got her last fall. It kills me how she can’t hold that baby girl anymore, I tell you!” Penny wiped her eyes. “But she will be free to hold other babies in heaven, ’fore too long. Don’t you think it’s like that, in heaven? Them lost babies, they gotta have somebody to care for ’em—so I think Jesus brings some of the most special mothers up for the job.”

Sure, Meg thought, and leaves their own children motherless on Earth. It wasn’t an especially comforting theory, in her view. She supposed, though, that Penny imagined herself the capable understudy—which she obviously was. Maybe they all had a mission in life—and in death, unknowable though it might be ahead of time.

“You got kids?” Penny asked, setting four plastic cups on the counter, each a different, bright color.

“One daughter; she’ll be sixteen in two weeks.”

“Bless you, it’s an awful tough sentence y’all got—but look at Lana, she don’t never complain. Well, she cain’t now, of course, not with her voice, but you’d know it if she wasn’t content. I’ve seen her cry a time or two since she got to this state, never in front of the girls, ’course. Even before, though, she mostly just thanked Jesus for the time she’s got left.”

“What about you?” Meg asked. “How do you manage all this?”

Penny paused, the pitcher of juice tipped above the red cup. “It wears you down, I won’t say it don’t. I got no life of my own—my husband, Lee, he took up with a coworker since I been gone so long.” She poured the juice and went on. “But I figure this is just what I gotta do for my sister. It ain’t forever,” she said matter-of-factly. “And ladies from the home health service and the church, plus Rob’s mom, once, they come spell me from time to time.”

“And your mother?”

“Bless her, she left us when we was kids.”

“She died?”

“No, left us—went off with some man from Los Angeles. Used t’ be Lana watched over me, so now I’m taking a turn.”

Meg looked in at Lana, who was close enough to them, in this tiny house, that she had to be hearing everything. What must she be thinking? How sad, but how understandable it was that Penny talked with such apparent disregard for Lana’s feelings. How easily she might come to regard a fully immobile person as a sort of fixture; Lana just lay there, propped up at an incline, her arms and legs limp and lifeless like a rag doll’s. The red plastic end of a feeding tube snaked casually out of the edge of her pink shirt. Lana might
want
to interact with them, tell her own story, say whether she was glad to be here with her sister and her girls, or if she wished mightily to spare them all the indignities of injecting liquid into her belly, of seeing her diaper changed like little Melissa’s—a grown woman, a beautiful, recently lively woman, needing her legs lifted so someone could wipe her ass. She might want to correct or add to the things Penny was saying, but if she did, no one could tell.

The girls trooped in and seemed happy to tell Meg all about what they liked—jump rope and chalking and riding scooters and playing house—and how they helped Aunt Penny take care of their mommy, who they all knew was being called home to heaven “to live with Jesus and Daddy” before much longer. Meg wanted to ask them if they thought they would miss their mother, if they felt cheated by God, but of course they wouldn’t know the answers. And she wouldn’t utter those things with Lana twelve feet away. She asked Penny a few practical questions about Lana’s care, accepted a cup of juice from Colleen, then, as soon as was polite, escaped the sunny little house with the dying woman trapped inside.

T
HE DRIVE BACK TO
O
CALA SEEMED INTERMINABLE TO
M
EG
. D
ID SHE
imagine that driving was more difficult now? That she had to press harder to keep her acceleration steady, that she had to
think
about keeping the car centered in her lane? When would it no longer be safe for her to get behind the wheel? The sight of her house when she drove up was a weight lifted off her chest. Dying on the highway would be an untimely irony, and anyway, she had things she needed to do before returning to Jesus or whoever might be in charge.

Inside the house, she made a glass of chocolate milk—which felt like more work than it should be, too—and took it with her out onto the patio, where she would write some more. The image of Lana Mathews was stark in her mind. She wrote:

I visited the home of an ALS patient younger than me, whose status now is near-complete paralysis. She has a hospital bed in the living room, where she spends literally all her time. Her children are there, and her sister, but it’s no life for that woman, just lying there waiting for the next failure of her body—her breathing is just about all she has left.

She paused, remembering again being trapped in the stable with Bride that night…in a sense, she knew exactly how Lana must feel. How awful, and how sad! She saw herself in Lana’s place but tucked away in a less cheerful setting—Brian wouldn’t be able to stand having her in plain sight—and Savannah…Savannah would need to have a life, not be trapped too. How long the days would be, how
boring.
Would Savannah read to her when she visited? No, she’d sing. Well, those would be good moments, at least.

It’s astonishing to me that Lana wants to live this way—which I assume she does. (Not like she could say either way.) I understand the religious argument against suicide, and I do respect it for those who believe. Jesus is very much present in the Mathews house, which explains a lot. As I was leaving, Penny, the sister, said, “Lord Jesus watches over you, never forget.”

She stopped writing and looked out over the shimmer of the pool, into the shaded vale of long-needle pines. She had wanted to ask Penny, “How do you know?” but she hadn’t. It was faith, after all, that provoked people to say such things—they didn’t
know.
They
believed.

Well, she believed some things too. She believed in the mysterious power of life and the universe—call it God, if you liked; she believed there was some place the spirit lived before inhabiting a fetus and again after leaving a body of any age. She believed there was a realm of knowledge and beauty and peace that existed around everyone, all the time, but that few people understood how to access it. She wasn’t afraid to die.

It was the living in futility and helplessness that terrified her.

She would not do it.

She wrote that down.