They turn the lights off for me at one, and leave them off until the sun is in the sky. I need the darkness. My eyes hurt so much without it. One am, that's later than they do for most. They do it because they know that they can't help me. They want me to be happy. I've always been afraid of the dark. They smile and they're sad. They leave the lights on for me. They want me to be happy.
I spend the hours staring at the inside of my eyelids, sometimes a dark thick sleep mask, sometimes crying, always thinking, always nothing but the words “help me.”
I'm so fearful at night. Sometimes I sweat like fever, or shiver with no control. I spin in my bed in the darkness and my body aches so much. I panic more and more, but stop calling the poor night nurses. They cannot help my panic. All I can do is lay as still as can be, and try to convince myself not to die, my heart not to explode, my mouth not to scream. Sometimes I don't know I'm screaming til my throat goes raw and someone brings me water, like a ghost, in the dark.
Sometimes I get scared of the panic attacks, and in my fear, I start one. They last for hours. It's so routine. I'm so scared and I have nowhere to hide.
Are you awake?
* * *
It's cold when she wakes up, sprawled out too far across the bed to well within where her husband should be. She leans over, and the clock says three. It's dark inside the room, so she smells the scent of turkey all the better, and hears another cling or clang of the noise that woke her up.
She wraps up in the blanket, trailing it off the bed behind her as she pads her way softly to the door, down the hall, to the kitchen all lit up, and the smell of Sunday dinner in the middle of the night.
She peeks into the kitchen, then leans into the frame, still groggy, still asleep, and sees her husband there in just his shorts and an old t-shirt, reaching into the stove, wearing the oven mitts she bought him when his old ones fell apart. He looks up and he sees her, smiles and shuts the door. It's hot inside the kitchen, and he dabs his forehead with a towel.
“What are you doing up?” she asks him in a yawn, closing her eyes and craning her neck to one side.
He looks sheepish, embarrassed. Almost confused, not for what he's doing, but for how he should explain it. He leans against the counter. It's covered in sauces, spices, a bunch of pots and pans. He's in the middle of a project, as though it was the middle of the day.
“I was just... testing out a recipe.” He laughs a little when he says it, knowing it's silly for him to be awake, making noise, doing this. He is instantly abashed and sorry, because he knows he woke her up. It’s difficult to explain, he feels. He tells her so, or tries to.
She stares back at him through squinting eyes, now just as confused, his answers not helping. She guesses there's no harm. She's tired. “Are you gonna eat it?” she asks dumbly, still all groggy.
He smiles. “No, I'll save it for tomorrow. I'll come back to bed when I'm done. I just couldn't get it out of my mind.”
She looks at the array of ingredients, spread all over the kitchen. “Try to hush, k? Don't wake the kids up, it's a school day.”
She sniffs, yawns. With eyes closed as she turns, she blows a kiss his way, and quietly pads back down the hall to bed, careful not to wake the girls, and when she gets back to her room she curls up with the blanket and falls straight back to sleep.
* * *
I have watched the sun rise two hundred times today. Sometimes I want another room, so I can watch the day end, and maybe follow the sun down, wherever it goes.
They used to keep a clock in here, but I made them take it away. It scared me, going round and round. I counted the hours as best I could. The numbers went so high. Sometimes it was all I watched. Blue clock, I II III IIII. They spell “IV” wrong on the clocks sometimes. I don't know why they do it. I made them take it away.
They used to put the TV on until they saw it made me scared. I would have nightmares that they were talking to me. Nightmares like a waking trance. Staring at me, day after day, after day, after day, leaning down, fresh faces, smiling at me, every time, telling me the news. It scared me to see them always smile. People would laugh and laugh.
Used to be it was my medicine. TV. Turn the lights out. A calming blue fills the room. It was like a friend that stayed up with me, telling the same stories over and over til the sun came up.
* * *
She wakes up around noon and jumps up with a start when she sees the clock, but there's nothing to fear. It's Memorial Day, and the girls don't have to go to school. She remembers slowly, and lays back down beneath the soft light of the sun peeking out around the blinds, til no anxieties remain but the quiet frustration of being a grown woman who still sleeps in so late at even the slightest chance. What kind of example is that for the kids, she dryly wonders.
She's alone in the bed, and her husband's side is cold, still made, unslept in. She gets up curiously and walks out into the hall to the smell of coffee and the buzz of a TV on mute. Her husband is sitting on the porch outside, in the middle of a book, and she steps outside to join him.
“Hello,” she says, and “Afternoon,” says he. She yawns and says she can't believe she slept in so late, she'll be paying for it tomorrow.
“Couldn't sleep?” she asks him.
He looks up from his book and blinks and rubs his eyes. “Ahh. Yeah. Not a bit.”
“Well you've got to at least try,” she teases. “It's not hard to stay up all night if you never take your eyes off the TV.”
“It was really interesting though,” he says.
She kisses him on the head.
He leans into her body, smiles. “I'll be paying for it tomorrow, too.”
“Nap later,” she tells him. “I'll take the girls somewhere. You can catch up.”
“Okay,” he says. “I'll try.”
* * *
He comes into the room and helps me into a wheelchair. I used to walk. Now I don't. I don't know where I'm going. They put me in machines and I close my eyes. They used to have me swallow things. Not so much now. Weeks ago it stopped. Weeks ago.
I close my eyes and feel the hum of the machine. It feels better than the room. It's warm. Close.
* * *
She glances over to the passenger seat when they get onto the turnpike, and her husband's head is lolled over against the window, lips pressed shut, and she smiles at how insistent he had been of her to drive them all today. She had begrudged him at first, but now that she knows they'd all be dead by now had she held her ground and made him drive, she can see the humor of it all. He looks cute, like a child.
“Can we turn on music?” her daughter asks, after a few miles of silence down the highway.
“Not right now,” she replies. “Let's let your daddy sleep awhile.”
“I'm not asleep,” he mumbles, eyes still closed, head against the window, leaned over exhausted-looking in his seat. “You girls go ahead.”
She glances over, nods her head, and turns on the radio for all of them, trying to keep it quiet enough so that maybe he can rest.
* * *
When I sleep—I call it sleep—they tell me I am still awake. I can't tell anymore. The room goes blurry and I can't recall a thing. They're so patient when they wake me up. Are you there, are you there, it's the doctor, it's the doctor, we want to try something new. Always try, never know. But we all know. We all know how gone I am.
Sometimes a girl comes in the room. She never, ever cries. She smiles and she draws me pictures. I want to steal her body, and sleep for just a while.
* * *
She wakes up in the night to the gentle rustling beside her, as her husband tries his hardest to slip quietly out of bed and slink away. She listens to his footsteps as he pads softly past the bathroom and out into the hall, so she opens her eyes and looks over at the clock, which says 2:15.
She wonders what he's doing out there, if she should be worried. She never thinks she should be worried about him, though. Maybe he's just sleepless—he must be, really, because he is doing a horrid job of it if he's trying to be sneaky. She hears him turn the TV on, and quickly turn it down. That's all it is, she tells herself. He can't sleep. He'll be okay.
As she falls asleep she decides she can't remember the last time she woke up before him. She can't remember the last time he went to sleep at all. She drifts into a nightmare, and wishes he was there.
* * *
The sun is rising and I tremble. It's so scary to me now. Kids are born and die in the time I've been awake. Families form and break apart. Couples date and marry, a million lives all change. They sleep and see a new day. I see the sun again and laugh. It will never, ever go away, and I will never be okay.
* * *
She wakes up to use the bathroom and she sees him on the floor. He's staring at the ceiling, eyes open but sunken, laid out between the door and the frame. Her heart leaps to her throat and she kneels down to shake him awake. But he's already awake. He keeps his eyes open and he mumbles that he's sorry.
She helps him to his feet and is shocked at how light he feels. It's still hard for her to lift him, but she couldn't do this before. He has never looked so skinny. His shorts are damp and cold, so she pulls them down to his feet and helps him lift his feet. She gently puts him into bed, and he reaches up to touch her face and stare into her eyes as she lays him down and crawls into the bed behind him. She kisses him and holds him close, her nose buried in his hair until the sun comes up, and she falls asleep with her hand over his heart.
* * *
A girl comes into my room sometimes. She talks a little, cries so much. She looks so tired. I want to steal her body and sleep for just a while. Sometimes I talk to her. She cries so much.
* * *
She taps her feet all restless in the waiting room, self-conscious, watching her girls, coloring old magazines with markers now. They have a coloring book for that, but it's all fine by her. If they tap her knee and tell her that they're bored one more time…
She wishes she were bored. Too many thoughts in her head for now, all these fears. Her girls seem too young to worry. She's done a good job of keeping them safe and ignorant. If she tells them Daddy is okay, then Daddy is okay. We're just checking on him, sweetheart. It's just a checkup for him.
The room they sit in is not empty, though not so full or active, either. People have come and gone, checking in, checking out, pacing. None of them look too sad to bear. They seem bored, too. It's been a couple of hours. In one more hour she'll go, she'll bother the girl at the desk, see if she knows how long it'll be, if there is any news yet, if she can see her husband, if she thinks he'll be okay.
The door opens and the doctor walks in, calling out her name. She looks up, rises, and he comes over to her with a smile and he lays his hand upon her arm. She bristles at his touch, and mumbles a half-heard question.
“Why don't we sit down,” the doctor says to her, and leads her away from the children, to the corner of the room.
* * *
They said I was singing again. Too loud, they said. They laugh when they say it. I think that I laugh back. They ask me what I'm singing sometimes, like they can't hear the words. I try to sound them out sometimes, but I can't without the tune. “Allbye then, abba blissyou! GOD DAMN, I miss you! Wha-na-na, na-na, love me do! And a ya, yatta hey! Ob-li-do, ob-li-day! SEEEENT ALL MY LOVING, to you.” And then they smile.
* * *
Her eyes are on the doctor when she hears the door open again, but her attention on his every word, his every frustrating word. He tells her there is something wrong, but he does not know what. She knew that too. Even as they speak she wants to slap him, for smiling when he came in here when he knew he had no news. Fix him, fix him, why can you not fix him? How can you not know what's wrong? Then he rattles off the possibilities, deadly serious, each one scarier than the last. Multiple sclerosis, Alzheimer's, cancer. None of them make sense to her, but each possibility echoes in her ear like gunshots til he looks up suddenly and says “excuse me,” taking his hand off of her wrist and rising quickly to see someone entering the room from where he came from, lurching in from past the door.
She turns slowly and sees her husband, and rushes to his side. He's standing there before them both, leaning on the counter, the receptionist flustered and confused. The doctor has him by the shoulders, but her eyes are on his face. It's like he doesn't see her, like he doesn't have a clue where he even is.
“Oh no,” she says to no one, and her eyes fill up with tears.
“Thought you wanna me, um, follow you,” he's saying, toward the doctor. “Cun find you.”
The doctor's telling him he's going to be okay and beckoning for nurses. They're going to admit him today. The doctor curtly tells the nurses what to do. She starts to follow them down the hall, slowly, but stops and turns to see her children on the floor, looking up from the scribbles on their magazines, at her and the doctor.
The doctor puts his hand upon her shoulder, and she leans forward toward his touch to collapse against his chest, and cry.
* * *
A girl comes and tells me merry Christmas. She leaves a stocking on my bed. Inside is candy and a toy. I tell her thank you and close my eyes. She cries and kisses me on the cheek. She feels so old and cold and gray. I ask her where my family is. She cries and cries and cries.
* * *
She wakes up in the morning in a bed that's too big for her. It's dark when she gets up. Winter is hard. She's always so tired.
She gets her kids their clothes ready and sets out some cereal. They turn the TV on. Maybe they'll be late. She's not sure what time it is. She'll take them to school soon.
They used to ask if they could go and see their daddy.
They used to ask to see him. They'd ask her all the time. She'd take them after school. She always tried not to cry. It used to be easy not to. She would sap his strength and use it, take his tired smiles and turn them inside out. But soon every time he touched her his hands would feel like bones. He was three years younger. She should feel the old one. Once, he screamed at all of them. Screamed, and cried, and tossed until she got scared and took them all away. Sometimes she still takes them. Sometimes they still ask. They used to ask when he was coming home. The five-year-old asks if her daddy is broken. She tells her that he is. She asks if they can get a new daddy, just like the last one. Like a dog. She thinks you get daddies at the store. The woman doesn't say a word. She doesn't know the answer. You can't have a new daddy, she says to herself. Against all odds and mercy, kids, the old one's still alive.
* * *
A man comes in my room at night. He says they're coming to get me. He sits in the chair across from me. He never tells me what he means. He never tells me what he means.
* * *
Steak night, they tell me. Steak! Steak! I throw the plate in her face, that bitch, that bitch, you bitch, you bitch, you'll never be a chef, you ugly, no-good, wicked cunt. They never bring me steak again. They say that I should eat more. They wish, but not too hard. You bitch, you bitch, you'll never be a chef like me.
* * *
They're moving me to another room, where I can't see the sun. They don't tell me anything. I say goodbye to my window. Bye bye. Bye bye! I say goodbye to the skyline. Bye bye. Bye bye!
* * *
She goes to see the doctor and she leaves his office in tears. She slams the door, not even pretending to be polite as she spews her hatred at him. She wants him to suffer, too. She wants him to quit smiling. She wants him to not go home and not sleep until he cures her husband, because how could he sleep, dream, drift away and be okay knowing that her husband is in there, trapped in his head, screaming all the time. She told the doctor to just put him in a coma, but he won't even try. He says it will only make it worse, but what does he know? Nothing! She wants to go back into his office and hold him by the throat until he does it anyway, because how could he know if a coma would be so much worse.
Fists clenched in mournful fury, she stands at the door of her husband's room. She peers through the narrow window to see him staring at the wall. She has to squint to see him in the dim light, and she wishes that she couldn't. He weighs a hundred pounds now, and she shivers at the sight of him.
She leaves without going in, she's been so scared to see him since they told him he'd been moved. She's so scared that he won't know her. She feels selfish for it, but she hasn't the nerve today. She smiles sadly at the receptionist on the way out, and the girl softly smiles back. She walks back to her car, and sits and stares at the parking lot through tears that well and sting her eyes before they grow enough to gently fall. She leans her head down onto the steering wheel.
The sun is setting when she wakes up, and she sniffles through dried snot as she starts the car and drives away.
* * *
A woman comes to visit me, and I scream until she leaves. I scream. I scream. No words, the tendons tight in my neck until she shivers and collapses. I want to make her as sick as me. I scream and bellow.
I spit on the floor in front of her. I dribble all over myself. I scream. I scream.
* * *
She remembers when they told her his disease was fatal. They said they didn't know til it was too late. It's so uncommon. We didn't catch it. Neither had she. He had always been awake so much. She had thought it was the caffeine—she'd told him he should cut back. He never complained.
She felt so guilty when she thought he was on drugs. Never seriously, but seriously enough to ask. He had told her no, no. She'd never thought about it again. He'd had a hard life. He didn't know his parents. He could afford to have some quirks, and angst, and sleeplessness. He had acted strange before, but she should have noticed he was stranger sooner as he got closer to the end.
“The end,” she thinks again. It echoes in her head, and she had caught it like the lie it was. “The end.” It isn't over yet. Somehow, he's still awake in there. Somehow, he's still alive.
She remembers when the doctor told her all the worst, once they had finally figured out what it was. You can always tell when a doctor has bad news. He had told her that he will get worse. He had told her that he will feel it all. He had told her that he will never sleep again, that he will lose his ability to function, that he will die, and he will be as sharp as ever through it all. He will be demented. He will see things that are not there. He will look and sound like he's gone mad, but his brain would work just perfectly, if only he could sleep. He will never go full brain dead, and he will always be awake. Why did he have to tell her that. It would be better to think his mind was mush. It would be better to know that he had no idea who she was, that he would go to the end dumbly, numbly, like a dog.
Somewhere in there he is still alive, no matter how insane and sick and dead he looks. Somewhere in there he is still alive, and she will never see him again.
She looks at her kids with horror now. The last thing the doctor told her was that the disease was all genetic. Carriers pass the disease to their children with a fifty percent chance that the disease will one day show. His parents were carriers, and they passed it to him. He's a carrier too.
She looks at her two little girls sometimes, in the mirror, in the car, or at nighttime, while they sleep. They catch her staring sometimes. She tells them that she loves them. Fifty-fifty. One of two or maybe both. They won't know til they're as old as he is. Sometimes she hopes that she'll be dead by then, so she won't have to watch.
The only thing that helps is sleep—so she sleeps. She sleeps away the weekends, from the moment it gets dark. But even then sometimes she sees him, awake and tortured in her dreams, staring lidless at her from across a giant bed, his skeletal body, his mouth locked open as he gasps. “Help me.”
Sarah Szabo is a child of America. An ardent student of liquor, Greek history, and celebrity gossip, she is a proud dropout who lives and works from the back of a 2000 maroon Dodge Dakota in northeast Oklahoma.