“All aboard.” It takes all my effort just to get these two words out, yet Peyton giggles with pleasure. For the twenty-seventh time, I plop the train on its track and we watch as it clicks past the coal yard and chugs up the hill. My back aches from this hour spent on the drafty floor of what we, after twelve years, still jokingly call our starter home. My husband’s TV is blaring Fox 5 Atlanta’s news so loudly it makes my chest tighten. What a relief it would be to simply walk away from din and discomfort.
But I don’t. With effort, I refocus my attention onto Peyton’s delighted face, just as the little train crosses the bridge and whooshes merrily down the opposite slope. Again.
Something nobody warns you about, when you get very sick, is that you have to be polite. You have to be Emily f-ing Post every minute of the day, and for a couple of reasons: one, pretty soon you’re liable to be dependent on others so you might as well build up some Brownie points. And two, you hate to disappoint whoever is waiting for you to do something poignant they can mention in your eulogy.
Their eyes have a way of raking over you when they think you’re not paying attention. You can almost hear them rehearsing in their minds the anecdotes they’re saving about you—little mental snapshots they’ll pull out later to smile about when they’re feeling nostalgic, or to bawl over when they need a good cry.
FYI, you’re already half-dead to them, when they start that. It’s not that they’re in a hurry to see the last of you. But human nature can’t help itself; they need to plan how to remember you when you’re gone.
So although I should not be entertaining a preschooler on the cold floor when my side is throbbing and my skin is stinging in the places where I’ve scratched it raw, I play anyway. I make sure to gaze into my little blond son’s beautiful blue eyes and smile softly at him, so that my husband (glancing furtively from his reclining chair) can note it, and remember (I hope) to tell Peyton someday, Your mama loved you so much.
I do love my baby, more than anything. I just don’t like to play trains, and it irks me that I’m no longer allowed to admit it.
When you’re healthy, it’s acceptable to say, “My God, this is boring the piss out of me.” That moment is just one of a billion moments lining up one after the other, all going as fast as that candy on the conveyor belt with Lucy and Ethel. Nobody worries much about how you react to any particular one. But once you’re sick, every moment is a potential eulogy moment, and you’re not supposed to bitch.
I glance sideways, resentfully, toward the screaming TV.
Mark clears his throat. “Y’alright?” he asks, casually.
I start to answer, just as a small red object wedged between two sofa cushions catches my eye. Leaning over, I yank on what turns out to be the left foot of Wonder Woman. “Hey, look who I found.”
Peyton regards her thoughtfully for a moment. “Can she be the dwiver?” he asks.
“I don’t know if she’ll fit.” I frown, trying to pose the stiff-legged figure. Finally I give up and set her, in an admittedly precarious position, on top of the engine. “I think she’ll just have to ride up here.”
For a year after the first blood test came back funny, the doctor said I doubt it’s anything, Sharon. Then she said Fatty liver. My enzyme numbers kept rising, so she passed me to a colleague who entertained several ideas over the next six months. Hepatitis? Sclerosing cholangitis? When the gnawing of worry kept me awake at night, I’d log onto the computer, trying to piece together the puzzle of my prickly skin and trembling hands. Stop imagining you have every symptom you read about, I scolded myself as I studied the various possibilities. Late on an autumn afternoon, my liver specialist looked me in the eye and said PBC. And those were letters to make my blood run cold, because my sleepless nights on the Internet had acquainted me with all the horrific ways the liver can fail.
Primary biliary cirrhosis. I recalled that it wasn’t really cirrhosis, that it had more to do with bile ducts. That it struck women, mostly. And that there was no cure.
Sitting there in that leather chair, my vision seemed to have dwindled to pinprick size. The doctor’s earnest pink face wavered in front of mine, his mouth forming words like eventual transplant, but I couldn’t absorb them. I could barely think how to put one foot in front of the other to walk out of his office.
Mark and I left the office and picked up Amanda from the “Welcome Sixth-Graders” dance at her new middle school. We took her to Hardee’s for a bite before getting Peyton from the babysitter. Amanda was flushed and hyperactive, eyes darting around the restaurant and a quick, disconnected smile flickering across her face as she tried to focus on the menu.
“You order for me, Mama,” she finally begged.
My hands felt numb around the edges but I shook them out as I asked for our usual selections. So I really have it, I kept thinking. I hadn’t let myself dwell on negative possibilities as we waited for the latest test results, but now I felt oddly dirty and insulted, as though some filthy wild animal had made a nest in my house.
Mark moved down a few paces to wait for our order, but Amanda was so distracted I had to nudge her forward. “Must’ve been some dance,” I said, looking at her. She was getting prettier lately, developing a figure. There were things about boys and sex that I had been planning to tell her in another year or two, but I realized with a chill that I’d better not wait.
I watched a secretive little smile play around her lips.
“What’s got you in such a tailspin?” her father demanded, crossing his arms on his chest.
“Nothing,” she said, her face going rabbity with fright. The eyes darted again, now seeking a change of subject. “How was your… umm… doctor appointment?”
We gave her looks that indicated we weren’t fooled by her sudden concern, but then our order was ready, so we ignored the question and busied ourselves—I really have PBC—collecting napkins and straws. Several minutes into the meal she thought to ask again what the doctor had said. Mark glanced up at me to see if I would explain, but when I didn’t he said quietly, “She just has a liver condition. She’ll be okay.”
“Huh,” Amanda said, craning toward the counter where three teenaged boys were placing their orders.
Mark shoved a couple of fries in his mouth and met my eyes. Assuming a mock-threatening tone, he said, “But if you do get any ideas to croak and leave me with these kids to raise, I swear to God.”
Amanda’s eyebrows arched. “Hey, Mama, would I get any of your life insurance?”
“This is nice,” I said. “You’re spending my insurance money and your daddy’s scared he might get stuck with extra work.”
“Damn right.” Mark grinned. “When Peyton turns eighteen I guess you can go ahead and expire if you must, but not before.”
I made a face at him, then dropped my gaze to the food in front of me.
“How much would I get?” Amanda wanted to know.
I swallowed. “I don’t know,” I told her, “but I bet not enough to hire a maid and a cook and a tutor and hairdresser and chauffeur…”
“Oh,” she said, her shoulders slumping in feigned disappointment. “Dang.”
After a while Mark glanced at his watch and began to gather up his trash. “If I drop y’all at home I could go ahead and get in a half-day at work,” he ventured. He usually works from 1 p.m. to 10 p.m., supervising a call center, though today he had taken off for my doctor’s appointment.
“No sense using up a whole day,” he said. “I might need to miss work again later, if something else comes up.”
The numbness in my fingers crept into my palms. “Then pick up Peyton at the babysitter’s,” I said.
Mark rechecked his watch. “If I do that I won’t make it on time.”
“Fine,” I said, wrapping up my barely-touched sandwich. “I’ll handle it.”
That night, when Mark and I climbed into our bed, Peyton was already asleep in the middle of it. We used to move him back to his own bed, but he’d wake up crying and it just wasn’t worth the trouble. I pulled his warm weight on top of me for a few minutes and then shifted him over to my usual side of the bed so that I was now in the center.
“I wanted to be next to you for a change,” I said to Mark.
“Okay,” he agreed, reaching toward his nightstand for a tissue. He blew his nose loudly and began to talk with what seemed to be great enthusiasm about the football schedule for the weekend. Georgia, he said, was playing at one o’clock Saturday, the Falcons at four on Sunday. Anything we wanted to do would have to be planned around those times. I pressed my backside into his soft belly as he tossed the tissue in the general direction of the wastebasket.
“The Falcons’ll get their asses handed to ‘em if Vick’s still injured, but I’m watching it anyway,” he was saying.
Throwing my leg backward across one of his, I pulled him in my direction as he enumerated the strengths and weaknesses of the Falcon offense. His head was propped on one of his hands and with the other hand he poked me once or twice as he warmed to his subject. I contributed an occasional noise—hmm, or yeah, or uh-huh. His voice was so loud in my ear I was cringing.
“Just tell me your opinion of Dunn,” he insisted. “You think he’s a good player?”
My response was a sigh. Then “I guess,” I said shortly, throwing back the covers and climbing over Peyton.
He stared down at the spot I’d just vacated and frowned a little. “That sumbitch can run…” The sentence trailed off. He rolled onto his back, eyes to the ceiling. “Where are you going?”
I hefted Peyton back into his place between us. “I’m ready to go to sleep now.”
Silence swelled. I fiddled with items on my nightstand, giving him plenty of time. I heard his breathing change as though he planned to say something. When he didn’t, I snapped off my bedside lamp. In the concealing darkness, my face crumpled at the realization that this man, my partner in life—undemonstrative though he was—would actually let this day end without offering me a single word of comfort.
“All right, then,” he answered instead. “I’m tired as hell myself.”
I got under the covers. Back to back with Peyton, I willed myself to be still and not to shake the bed by crying.
“Well, I did it.” Mark’s voice in the dark sounded grim and satisfied.
I knew he wanted me to say Did what? But my throat was crowded with tears.
“I got through the day without coming unglued on you,” he said. He flipped his pillow over and punched it into the shape he wanted. “G’night. Love you.”
There is nothing on earth better than Peyton. Amanda will get off the school bus in half an hour, but this time of day, after work, is when Peyton and I unwind. I lie across my bed while he sits on the floor watching cartoons that were on TV when I was a kid myself—Tom and Jerry, Superfriends. Clasped in his hand is a three-inch plastic action figure that once was Mark’s; it is Aquaman, the handsome blond monarch of the seven seas. The whole Justice League is around here somewhere—Batman and Superman seem to live in the refrigerator; Wonder Woman sometimes peers up at me in Peyton’s bath. But though the paint is chipping away from his chiseled pecs and manly Cro-Magnon jaw line, it’s Aquaman who is the king of all the toys—Peyton’s absolute favorite.
The bedroom feels unusually warm and I hope Peyton might nap. My daily six-hour shifts of entering magazine orders into a computer have begun to tire me to a surprising degree.
Another interesting thing nobody warns you about when you get sick is that all of your responsibilities continue. Who knew? From watching tear-jerking movies I had the idea that being gravely ill would entitle me to lie abed and look frail and tragic until the end came. But it turns out that this is not the case. Bills still arrive with dispassionate regularity. I need my medical insurance so I need my job. Plus, with Mark working until 10 p.m., who else would take care of these kids from afternoon until bedtime? I may be unwell but I’m still Mama.
Stripes of weak sunlight filter in through the blinds, and Peyton is watching TV so quietly; my eyelids grow heavy and I drift off for a few minutes.
Something plastic taps my forehead. “Hello, Mama,” says a gravelly voice.
I open my eyes and smile. “Hi, baby.”
“I’m not your baby,” the deep voice says. “I’m Aquaman.”
“Mmm. Sorry.” I address the action figure who is in front of Peyton’s face, evidently doing the talking. “Aquaman, climb up here with me and let’s take an aqua-nap.”
Peyton’s eyes narrow while Aquaman thinks about it. “Okay,” he agrees gruffly.
We won’t really sleep, I know, but even five minutes of cuddling with Peyton is better than any drug the doctors can give me. He is thirty-seven pounds of pure comfort, with his blond hair that smells like baby shampoo, his warm forehead, and his cheeks so smooth and rubbery. It goes without saying that a kid his age has a round tummy and chubby legs, but in three years I’ve never gotten over my amazement about his tiny, perfect hands that fit inside my palm; his expressive eyebrows; his sturdy, miniature ribcage. His little butt cheeks are cool and round as scoops of vanilla ice cream.
He climbs into the bed and molds his body to the curves of mine. I’m thinking he won’t stay a minute, but he surprises me by resting long enough for me to almost fall asleep. Abruptly, though, he sits up and taps my head with his toy again.
“Mama,” says the deep voice.
I open my eyes and am looking at Aquaman. I smile automatically. “What.”
Then Peyton asks, in his own voice, “Mama, do you feel bad?”
I stare past the little superhero to my son, then, purely amazed at his ability to infer that something is wrong. “Well,” I whisper, “just a little bit bad.”
His brows knit. “You feel sick?”
With one finger, I stroke his porcelain face from temple to chin. We have not told him much, but since he’s asking… “Yeah, sweetheart. I’m sick.”
Peyton hesitates, but Aquaman apparently senses an opportunity for a rescue and leaps into action, again about two inches from my nose. “I’ll make you better,” he announces.
I should say that PBC is not a death sentence. Though the doctors tell me that mine is progressing faster than usual, they still offer me a great deal of hope. For example, I hope I’ll move up on the transplant list. I hope the little black beeper I was given will someday beep (which is the same as hoping for the death of some young, healthy person). I hope I survive the transplant surgery. I hope my body doesn’t reject the liver. And I hope this goddamned itching doesn’t cause me to lose my mind before any of those other things has time to kill me.
We’re in the car, sitting in a line of traffic in front of Amanda’s school. She sighs deeply and looks out the car window, stamping her feet slightly. “Mom. Stop scratching.” She manages to sound both pleading and hateful in one sentence.
I snatch my hand away from my neck and glance around at all the people who must have seen me clawing myself, unaware.
“I’m sorry,” I tell her. “I didn’t even realize.”
She rolls her spiteful eyes. “You’re always scratching. Like you’ve got a fungus or something.”
After that I don’t feel so sorry for her anymore. I give her one level glance as the traffic moves and we pull away from the school. “You know that liver disease can cause itching.”
She snorts her disgust. “I’m bored of your stupid liver.”
From his car seat in the back, Peyton yells, “Don’t you be mean at Mama!”
Amanda responds by punching the button on the car radio to find some angry-sounding rap. “Whatever,” she says, cranking the volume.
I wish I had a more dignified symptom for her to witness. If I could break my bones or throw up blood she might begin to realize what we’re dealing with, but unfortunately the only bones I want to break lately are hers.
Mark chides me about my impatience. “She’s worried about you being sick, you know.”
Nice line, but I don’t believe it. I think she’s so self-absorbed that she barely notices my condition unless it embarrasses her. A more unselfish mother would take into account that Amanda’s only eleven and can’t even grasp my illness and all it might mean, but I just want to shake her into teeth-rattling comprehension. I want her to stare at me with sad puppy eyes and then creep off to write in her diary how it breaks her heart to imagine that Mama won’t be there when she starts her period or gets her first kiss or goes to her prom.
Instead, when we get home she’ll slam the car door, pound up the stairs in her combat boots and scrawl Mama was scratching in front of everybody again. I hate her.
We cruise down the road that leads to our neighborhood, battered by the rapper’s shouted threats. In the rearview mirror I glance at poor Peyton, his face sweet while his little mind probably tries to make sense of the hostile words. This is nuts, I think. When I was a kid I liked that song “Wildfire,” the one about a pony lost in a blizzard. I liked Joe Cocker croaking out “You Are So Beautiful.” Linda Ronstadt crooning “Blue Bayou.”
Defiantly I change the station, collecting a withering stare. Still, I can’t stop myself from asking, “Whatever happened to pretty songs that made you think about nice stuff?”
“We don’t like stuff that’s pretty,” Amanda mocks, “like this old crap you listen to.”
In spite of myself, I giggle. The song we’re listening to isn’t more than five years old—so recent to me and so long ago to her that it reminds me what a little girl she still is.
“Mama,” Peyton says, “you listen to old cwap.”
“That’s not a nice word,” I tell him, but my mood has lifted so much that the tension in the car dissipates. I give Amanda a tolerant glance. “Not everything I like is cwap just because I like it, you know.”
“Oh yes it is,” she says.
I chuckle at her again, accepting that she’s merely acting her age. I couldn’t stand my mother’s music either, when I was a kid—well, except for one record. It was that tearjerker, “Honey.” One day when I was not at home, and she was there and all alone, the angels came…
I stop for the last red light before our street and gaze up at it uneasily, waiting. I hope the angels don’t come for me when nobody is home. On the other hand, though, it might be preferable to the way I usually envision my last moments: on my way to load the washing machine, I’ll drop dead at the feet of my family. Amanda will say, “Eeew, gross, Mom!” and Mark will sit there with his mouth hanging open, trying to figure out who he can get to finish the laundry.
It’s gotten harder and harder to do what I have to do. Mark and I work opposing shifts in order to save money on daycare—Peyton only needs two hours at the sitter’s with our current arrangement. But between getting up early for my own job and then staying up late to see Mark when he gets home, I’ve subsisted on very little rest for the past three years. In the last few months, Mark has often come home to find me asleep on the sofa.
Tonight, I’m waiting for him at the kitchen table. He sets his briefcase on the table and whips out some items for my perusal: a brochure about a convention center he’ll soon visit, some Falcons stats he printed off the Internet.
“Listen…,” I begin.
“Hang on a second,” he says, and strides into the bedroom, stripping off clothing as he does so. I hear him chanting, under his breath, “… hot like wasabi when I bust rhymes… you’ll think you’re looking at Aquaman.”
I trace the flowered pattern of the place mat in front of me and then glance around the dimly lit kitchen for what I know must have triggered that song in his mind—what triggers it in both our minds daily. There he is, of course. Little plastic Aquaman lying on the counter.
My husband returns in his T-shirt and pajama pants. “I’m starved. What’s to eat around here?” he says, and starts lifting the lids of the pots on the stove.
He turns, maybe just now registering the way I’ve been waiting for him at the table. “What?” he asks, with a fear in his eyes, but one that I believe has nothing to do with my health. Mark’s dread is for things that can’t be put off—a water heater that’s broken or a car that needs a new transmission.
I look into his face.
“What?” he demands.
I don’t know how to put it most gently. “I lost my job,” I finally say.
For a second he doesn’t seem to comprehend. Then he explodes. “That bitch fired you?”
“Not exactly,” I say. “Katherine just—she can’t much help it. I fall asleep at my desk. I can’t do what they’re paying me for.”
“Sharon!” he cries, with a face that looks like the world has ended. He jerks out the chair across from me and sits down in it, shaking his head.
“She said she’ll give me a chance to see if the doctor’ll put me on total disability before she writes up anything.”
“Yeah? And what if he won’t? Then what?”
I stare into his dilated pupils and try to remember that I’m looking at a scared, 34 year-old man who does not earn enough money to support us all. If I work, we manage well. If I die, they’ll all be provided for. But if I’m persistently alive and yet not able to generate any income, we’re staring down the barrel of disaster.
“He’ll probably be ready to declare me disabled and my benefits’ll kick in,” I say gently. By then Mark looks ready to cry, so I strive to keep my face calm and my manner reassuring. “If not, Katherine said she’ll try to let me go in such a way that I can draw unemployment.”
“This house,” he says, looking around miserably. “Two cars to pay for. And utility bills and doctor bills and food!” He turns his suffering eyes in my direction. “There’s no way in hell I can do it all!”
I hadn’t thought it possible anymore, but I well up with outrage at his inability to see the larger point. Despising him at this moment, I sit back in my chair.
“Well,” I say coldly, “maybe I could get a job waitressing on the weekends.”
“Oh, real good idea,” he says, getting up from the table. “You can’t sit at a desk and tap on a computer but you figure you can waitress.” He goes over to the stove and starts loading a plate with pork chops, rice and gravy. Staring down at the food, he shakes his head. “We’re gonna have to come up with something, though. There’s only so much I can do.”
I’ve figured out some things that I had always wanted to know. I used to wonder how it must feel to be elderly and to know that you couldn’t live much longer. Why, I wondered, didn’t old people ever seem worried about this?
Younger people surrendering to death baffled me even more. Didn’t these people have anything worth sticking around for? The stupid obituaries are always saying She loved life. Mark and I used to search for those ubiquitous words over coffee and the Sunday paper and then laugh when we found them. What a lame sentiment, we scorned. Who the hell doesn’t love life?
But I think I get it now. Though this may seem a strange comparison, I think it’s like when Mark and I used to want to have sex. We might wake up on a Saturday morning with a gleam in our eyes, but there would be Peyton in our bed. Tonight, we’d promise each other, and go through the day making veiled references. Afternoon would give way to night and still we would give each other the eye. We’d hear Amanda’s TV finally go off. Go to sleep, we’d mutter under our breath to Peyton.
When he would, at long last, succumb—on the sofa or on the floor—relief would wash over us. We’d carry him to his room, and then for a few delicious minutes we’d be free of the yoke of parenthood, so we’d maybe have a snack and a little conversation before getting into bed. When we’d finally lie down, the uncrowded bed would feel so good to our tired bodies that all interest in sex would drain away. Hating to admit it, we’d lie there until somebody got up the nerve.
“You still want to?” that one would ask.
And the other one, secretly glad, would say, “I did, but screw it, now. I’m too tired.”
So it’s now my theory that old people and sick people get exhausted in just that way. Did I want to see Amanda poised and grown up in her wedding gown? Did I want to hold hands on the beach with Mark again? Did I want to walk Peyton into his classroom on his first day of school? Well I did, but screw it, now. I’m just too tired. And the callous selfishness of that tiredness is good, because without it, it would hurt too much to know I won’t be doing any of those things.
I’m in bed. I have all day every day with Peyton now, and in the face of that, I’ve almost forgotten the way our after-work hour used to be a sweet reunion. He’s still a joy—he always was—but my days blur into moments of panic when I know I’ve fallen asleep and left him unattended; moments of guilt when I can’t remember whether I fed him. There are ugly scenes every afternoon when I have to battle Amanda to make her do the things I can’t, and tears of self-condemnation when I know that I failed in raising her to care about others.
Peyton cares. If hunger drives him to rummage through the pantry and find a box of crackers, he brings them to my bed and shares them with me. If I throw up, he pats my back, and if I shiver he pulls the covers up to my chin. He stays in bed with me for hours every day, playing with his action figures.
Mark had an opportunity to start working first shift and I made him take it so that in the future he’ll be home nights with the kids. So he’s at work; Amanda’s at school until four. And I am in pain. I am worn down. I would be crying except that it would scare Peyton. The black beeper that the transplant people gave me lies on my nightstand, still as death. Beep, goddamn you, I beg it silently, but it never has.
I brush my hand across Peyton’s platinum hair, loving him, as the lines from that corny old song flit through my mind. One day when I was not at home, and she was there and all alone, the angels came. But I am not alone, angels, or Grim Reaper, or whoever the hell is out there waiting for me. And I am not going anywhere right now and leaving this baby by himself with a corpse, so back the fuck off until his daddy gets home.
That damned sappy “Honey.” Who would believe that after all the things I’ve experienced in life, what sticks in my mind right now is a song I probably learned when I was five. But it’s a compliment to the songwriter, I guess—surely nobody will ever be on their probable deathbed thinking hot like wasabi when I bust rhymes… you’ll think you’re looking at Aquaman. Nobody except me, of course, and that’s only because I am, once again, looking at Aquaman, who hovers two inches from my face.
“Mama,” he thunders.
I force the corners of my mouth to turn up. “What.”
“We’re gonna fly to the Hall of Justice!”
“Good deal,” I say, closing my eyes.
This sounds like an excellent plan to me. I dream of myself on a crisp, white-sheeted gurney in a small room somewhere in the Hall of Justice, with Batman and Superman conferring nearby. The two of them dispatch the Flash to crisscross the globe in search of a donor liver, while out in the main room Robin and the Green Lantern monitor my vital signs on that big screen of theirs. Ordinary men would get bored before long and have to switch over and watch a giant-screen ballgame, so I’m relieved to be in the hands of Superheroes.
I stretch in the starched sheets and exhale deeply, smiling. Handsome Aquaman lifts Peyton onto my gurney and Peyton snuggles in beside me, beaming with pride that his friends seem to have this little situation of mine well under control.
Wonder Woman, I notice, doesn’t seem to be around. Briefly I consider her absence, but soon excuse it without taking offense. Her colleagues, after all, are busy with me. I presume she’s out saving the rest of the world by herself.