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Still Lovers | Chapter 4
Zoe sits in her chair, waiting for Marie to finish strapping Annie into the van. She is still thinking about the moment on the patio. The accident. With Viv. Viv, that’s her name. Zoe replays it over in her head. She had heard rumors about Viv, the grouch of the 3rd floor. But this girl - she was the opposite of grouch. She was goofy, playful. Her embarrassment turned Zoe on, giving her a feeling she never felt before. She is always the one who feels embarrassed around people. To have someone feel that because of something they did in front of her. It made her feel powerful. Marie takes Zoe’s chair and pushes her up into the van. The white small van can only hold two wheelchairs at a time, one in front of the other. Annie is in the front, and Zoe is placed behind her, her wheelchair locking to the hinges in the floor. Marie adds more straps to keep the chair in place, and she then places a strap around Zoe’s neck, pressing her ventilator against her trachea tube. This is to keep theLiteratureStill Lovers | Chapter 3
Viv is nervous as she rolls down the hallway, passing by rooms like her own. Most of them are closed, but in the ones that are open, she hears ventilators hissing in each of the room. She’s afraid to look. No, she’s afraid for them to look at her. Why? If they are here, they are worse than her, or at least just as bad. But, they’ve been here longer. They’ve mastered this life. Viv has not. She does not like that. Marie’s sneakers squeak behind Viv, keeping enough distance to let Viv move on her own. Viv reads the signs on the walls: ELEVATORS TO THE RIGHT. Elevators, yes. That’s where she needs to go. She turns to the right at the end of the hall and finds two wide elevators. Unfortunately, two people are there: a man in his 30s and a woman perhaps just as old, maybe a bit younger. He wears black scrubs and has an arm out to the woman, who is holding it delicately with her hand. In her other hand, she has a long cane that is mostly white but with red towards the tip. Viv doesn’t feelLiteratureA Piece of the Room
She’s gotten good at being a piece of the room. An expensive piece. One an owner has to meticulously maintain. Like a plant or pet. Something to enjoy but never get back what is given. She is that piece. Her parents converted the living room to be her display room after the accident. Bed right in the center of the room, so if one wanted to watch tv she had to watch what they wanted. Participate in conversations they wanted, though she didn’t have anything to say. Be the greeter to guests who came to see her. But more like they’re admiring a museum piece. A display of what once was. She lays in the bed, propped up on pillows to comfort limbs that no longer feel. A large ventilator breathes for lungs that refuse to move on their own. Sheets protect a body that is still, unable to feel hot or cold. Feel the sheets or the blanket or whenever her young sister puts a toy underneath her hand. Though the item is usually pointless and it is forgotten about once a blanket is thrown over the
LiteratureStill Lovers | Prologue
"Are you okay?" Viv asks, looking at the contorted eyebrows of Zoe laying next to her. She is worried something is wrong. "Yeah," Zoe softly whispers and her beautiful face begins to soften. "You?" "I'm okay." Viv feels hot, she thinks. She's not sure. "Do you want to stop?" "No, please. Never sto.. op. I want... to be... here... forev.. er." --- The repetitive machine. A hum that fills the dark, empty room. It inhales with a beep, exhales with a hiss. Plugged into a wall on one end. Plugged into a neck on the other. The neck belongs to a small, atrophied body, lost of all independence. Lost of all control. Still and silent. Eyes still closed, hair braided to keep out of face and face turned to the side to let the drool trickle out of the weak mouth to the damp cloth placed in the perfect spot. A thin blanket is draped over the small body of the person, barely covering the breasts and pudgy stomach, the boney-stiff arms and legs wrapped in soft casts to prevent them curling. TheLiteratureStill Lovers | Chapter 1
Sunshine poured into Zoe's room, gently resting on her eyelids. She opens them softly, realizing she is in a different position than last when she woke. She now faced the window of her room, the blinds opened enough to bring in light with the sun but not blind her. Zoe tries to smile, but it quivers and releases more drool from her mouth. Marie has to be working today. Marie is her favorite. As though on cue, the door to her room swings open softly, still loud enough to be heard over the hiss. A nurse dressed in blue scrub pants with a floral scrub top to match walks in. Her hair is pulled back in a tight low bun, with french braids intricately woven towards it. She adjusts the glasses on her face while she rubs the last remnants of sanitizer on her hands. Marie, Zoe's favorite nurse. In her life, having a favorite nurse for someone as medically complicated as Zoe is like having that favorite aunt. That same excitement seeing Marie fills Zoe her leg spasms in response. Marie walksLiteratureGentle
”There you go,” He whispered softly, “Just a little taste.” The small plastic spoon entered her mouth, bits of the applesauce-like mush coating her gentle lips. She tried to close her mouth, but even her mouth had lost its ability to listen to her command. She was able to catch just a slight taste of the sauce grazing her tongue, beautifully sweet and tart. As the spoon pulled back, the sauce spilled out and dribbled her chin, catching in the towel acting like a bib for this exercise. He sighed and lowered the spoon, bringing to her face a warm and damp washcloth. But he still shot her a smile. “Taste good?” She could not tell him, so she just gave him a single blink. A single blink meant yes. He gently dabbed her face, catching some drool coming her slightly opened mouth. “Maybe next time we try with something you really like. Like… chocolate. You still like chocolate?” She blinked again, wishing she could be fed some chocolate. More drool dribbled down her chin. He chuckled. “Okay, - Literature
Morning
It was breakfast time. Oatmeal. Eggs. Applesauce. Soft foods that she could chew and swallow. That was what she usually ate. Today was applesauce and scrambled eggs. From the window, her eyes skimmed the horizon and the ocean that touched it. The golden sand turned dark as it disappeared into the water. She watched the soft lapping of the tide and tried to imagine how it would feel against her skin, how the sand would feel between her toes. She could not. She has no real recollection of what it felt like. She sat in her wheelchair. Her head rested within the headrest, the chair slightly tilted back so that it would not fall forwards. Her hair was short now, cut to shoulder length for convenience, and her hands were still on the armrests. He sat next to her as he eyed her carefully, not talking. She acted like she didn't notice. She was doing her best to look outside at the people walking along the beach, but her head could not move. She couldn't move it on her own. All she could doLiteratureStars
Rhythmic beeping, clicking, and puffing. She had no idea when it had started. It must have been there when she woke up. She didn't remember waking up either. Or going to bed, for that matter. She desperately wanted another pillow, but she was too tired to bother. For a while, she didn't know where she was, but she remembered people telling her. She just couldn't remember their words. A beep, a click, a puff, always in succession. She had no idea where it was coming from. No noises she knew matched what she was hearing. It was annoying. It was always dark, but she never really felt like she was asleep. She had woken up, but it was still dark. But the dark was alight with stars. A plethora of twinkling amidst the vast, dark sky. Her mind searched for words great enough to define what she saw, but she couldn't. She remembered now. She was in the hospital. She didn't know why, but she thought they had told her many times. People were there, and they often told her things that she wouldLiteratureA Piece of The Room
Outside, the day was overcast, cold and gray. The rain beat gently against the windows. The rhythm of the falling water on the thin glass was the perfect soundtrack to doze off to. The little white house was small. Just a single bedroom, a kitchen with a table squeezed into the corner, a wide hallway, and a living room. Out of all the spaces, the living room was and would always be her favorite. On sunny days, East-facing double windows let in gentle rays of morning sunshine. On rainy days, like today, she bathed in the room in hues of blue and gray. The furniture in the room was sparse yet cozy. A side effect of the fact that she now needed space to maneuver within her house. The largest piece of furniture in the room was the couch. The fabric was a nice cream color, and it had an attached ottoman to prop your legs up on. It used to be her favorite place to sit in the mornings and drink her tea, but now she spent most of her mornings in bed, becoming a piece of the room. She'dLiteraturePerfectly Still
She was watching her again. She couldn't help it. She always seemed to be in the corner of her eye. The girl in the wheelchair. All around her, the world was a blur of activity. Therapists worked with patients, pushing their bodies to try and get as much function out of them as possible. But none of them were like the girl in the wheelchair. The stillness was the first thing she noticed, even before the chair. Even as she moved ahead at a brisk pace in her chair, she was motionless. It was unnatural, hard to explain even to herself. She had never really thought about all the tiny movements and little adjustments that people made, mostly unconsciously. A rolling back of the shoulders, cracking of the knuckles, a tapping of the foot, crossing and uncrossing of legs. Her body was completely absent of that. Tilted back slightly in her wheelchair, there was a certain quality to the way the girl sat in it. Almost like she was draped over it. Strapped in at various places, there wasLiteratureReminisce
They were gathered in a hallway that smelled of antiseptic and the undertones of lavender-scented soap. He stood next to her doctor, fighting the urge to run. A nurse in pale blue scrubs brought her out, and he felt sick to his stomach. He hadn't seen her in the chair before. For the last month, she had been confined to her hospital bed, and he has almost gotten used to the sight. When she was in the bed, it always felt temporary, like she could still get better even though the doctors had been very clear. Seeing her in the chair made him realize that there was no denying it now. This was forever. It was no one's fault, they had said. As determined by the police and the insurance, it was just an accident. Just an accident that she was now completely immobile below her chin. There was something unnatural about how motionless she was. A strap hugged her chest like a seatbelt, holding her in place. Her hands lay motionless on the armrests of the horrible chair, and she only wore a blueLiteratureSweetness
Every summer, oranges grew like sunlight. She would peel the oranges, the sections coming apart cleanly, perfectly, in her hands. When he peeled an orange, he would tear holes in it, the sticky juice squirting in all directions and staining his hands. "I don't know how you do it!" he would say. Now, there was a lump in her throat the size of an orange, and she couldn't swallow it. The intrusive screech of an alarm from the pulse oximeter next to the bed jolted her awake. The small machine flashed red, indicating that her oxygen saturation was low. She wanted to swat it to silence, but all she could do was stare at it until one of the nurses entered and tapped a button on the display. She knew the routine by now, but still found being suctioned unpleasant. She gagged on the suction catheter as the nurse inserted it into her trach, attempting to clear a plug of mucus, which had accumulated inside the tube. Her tongue squirmed between her lips as the mucus slithered up the clearLiteratureAlone
She was missing him so much. Lying in bed, she was waiting for him. Where had he gone? Didn't they usually wake up together on Sundays? Sunday mornings were just for the two of them to wake up when they pleased, free from obligations and responsibilities. Instead of waking up to a hand on her neck or her head falling from the pillow, she would wake up with his hand resting on her cheek or her chest, eyes staring lovingly into her sleepy ones. Or sometimes, she would wake up first and struggle to turn her head enough to stare at him. That morning, there was no hand on her face, no deep breaths, nothing but the sound of her ventilator and the rain against the window. She listened for the sounds of him in the bathroom. Nothing. The rest of the house was silent. Her body was turned away from where he would have been, so she couldn't confirm with her eyes that he was not there. As hard as she strained her ears, she could not hear a thing from him. She wished that she could turn to look at - Literature
Just Existing
It didn’t always used to be like this, but it has become my new reality for the past decade. I just lay there on the bed as I watch the “food” drip down into my stomach. I can’t feel what it’s like going into my stomach. I can’t feel anything below my chin. Ten years ago today I was 17 and about to finish high school when it happened. Blindsided by a speeding truck as I pulled out onto the road. I was pronounced dead at the scene, but somehow, they revived me on the way to the hospital. My spine was completely severed from my brain and from then on, I’ve been totally paralyzed from my chin down. A tube goes into my throat so a machine can breathe for me. A tube goes into my stomach so I can get food, water and medicine. I can’t breathe, speak, or swallow good enough to eat solid food. For 10 years I’ve been like this, spending most of my days laying in bed, listening to the hum of my ventilator breathe for me. Today might have marked 10 years since my accident, but really today was noLiteratureMy Routine
So I thought I’d go over what my daily life looks like as a 28 year old quadriplegic woman living with my boyfriend. My day starts the same everyday at 8am when my boyfriend Jack and I wake up. We are lucky to share a bed, as we made sure to purchase an adjustable hospital style bed, but one large enough to fit two people. Now we had to change up the layout of our apartment quite a bit to accommodate us. Our bed is in the living room next to the kitchen, this gives us enough room for my wheelchair and the hoyer lift I use to get in and out of it. The bedroom isn’t really a bedroom, it doubles as Jack’s office and also a room to store supplies. The bathroom is back there as well, but I don’t ever use it since it’s not accessible, it’s just for Jack or my nurse. On the weekdays when Jack has to work, my nurse arrives at about 8am, so the first thing Jack does is give me a kiss, then gets up and gets the door, letting my nurse in. Then Jack will usually shower after that and get dressedLiteratureAnother quad, another routine
Hey, my name is Sara and I’m a 27 year old C3/C4 quadriplegic who can’t move her arms or legs. I’ve been paralyzed for 6 years and live with my boyfriend of 2 years in our little, ground floor apartment. Thought I’d give a little recap of what a typical day in my life looks like living with my boyfriend Zach. My day starts off when we both wake up at 7am and Zach always gets up to go brush his teeth and get all my supplies for my morning care. I usually just lay there a bit while he gets everything together, because once he is done brushing, it’s time to start with me. Before anything else can happen, Zach throws the covers off the bed so he can strip off my diaper. It’s usually wet from the night before, as I have no control over my bladder or bowels. He wipes the pee off of me then gets out a disposable catheter. Since I can’t control my bladder, we have to make sure it’s draining. That means, about four to five times a day, Zach has to get me stripped down in bed, and stick a littleLiteratureAn Evening Together
Now even I am starting to think when will he walk out of there, I know that’s what Stacy is thinking. It’s past 6pm and I can tell Stacy just wants to go home. I just stay sitting there, slightly reclined, in my big power wheelchair next to our bed in the living room of our apartment, as I do almost everyday. Well I guess it’s a living room, for me it’s a living room, a bedroom, and basically a bathroom, as you’ll come to understand in a few moments. The only noise in the room is the chatter on the tv as well as my ventilator, hissing and puffing as it always, blowing air in and out of my trache and keeping me alive, trapped in my mostly useless body. My body has swelled up quite a bit over the past 6 years that I have been paralyzed, my plump tummy bulges out a bit. I guess the upside of that is that my boobs have gotten bigger as well. My face has plumped up a bit too, my cheeks are a little chubby but otherwise my face has stayed the same. My long, blonde hair drapes down the backLiteratureGoing Out
“Urrghh” I belt out, trying to keep my focus on my machine. My machine being my eye-gaze device of course. The only way I can get my thoughts out. By tracking my eyes I can type on it, then it will “talk” for me. It’s a slow process, but it’s the only way I can communicate. I have cerebral palsy, because when I was being delivered as a baby, something went wrong, and for nearly 13 minutes, I was left without oxygen. This left me brain damaged, not that I haven’t any intellectual disabilities, I’m very smart, but it left me without the ability to control most of my body. At 22 years old, I have to use a wheelchair, all four of my limbs jerk around uncontrollably, my head bobs around, and I constantly stick my tongue out of my mouth, causing me to drool pretty much 24/7. I don’t do any of these things consciously though, it is all involuntary. My arms are tight and contracted in towards me, my elbows and wrists always bent, yet I still jerk them around, and my head bobs as I try to getLiteratureAmelia - My Locked-In Life. Part 1
I’ll make this brief, I don’t want to get too deep into everything, but this is basically my life now, this is my confession. My name is Amelia, and a year and a half ago, I was a totally healthy 26 year old. I was a model, I sang, I was a beautiful blonde bombshell, all of that is behind me now. Why is it all behind me, well it comes down to a completely random, unexpected stroke. I was healthy before that, perfectly healthy, and out of nowhere, boom. The stroke didn’t kill me, but it might as well have, instead, it robbed me of my body, but kept my mind fully in tact. I know everything that’s happening around me, but I can’t move a muscle, well almost not a muscle, my eyes still move, I can tilt my head, and have a little ability to move my lips, but that’s it. Locked-in syndrome is what it’s called, and it’s pretty much exactly as it sounds, my mind is perfectly fine, but I am “locked in” my own body. I want to give some insight into what my life is like now, this is my reality.LiteratureTrying My Hardest
I’m giving it as much effort as I possibly can. My eyes, half open, are trying to tilt, just slightly to the left. I’m literally straining just to make this tiny movement. My nurse Jessica, hovering over my head with her head in my face asks again: “Holly, do you need suction?” I give it all the effort it can, and finally, I feel my eyes tilt, ever so slightly to the left. It’s a slow motion, almost imperceptible, but it’s all I have left now. I relax my eyes and they go back to looking straight. They itch from the lack of blinking, but there’s nothing I can do about it. I hear Jessica turn on the suction machine and get ready to administer it. I feel like I’m choking and need the suction now. The ventilator pumping air into my lungs is disconnected and the long, thin suction tube is stuck into my throat. I would wince if I could, but I can’t, even involuntarily. I just lay there on the bed, motionless, yet suffering through so much discomfort. My body aches all over, but the painLiteratureAmelia - My Locked In Life. Part 2
I’m glad that my first post went over well. Thank you all for the well wishes in the comments, but a lot of people asked me just why I went so in depth about my condition. I’m not here to mince words. I am who I am now, this is the body I have to live with, so, I thought I would take it a step further and walk you through what a day in my life is like. When I wake up, I’m usually alone, staring out into space and drooling onto myself. But unlike you, who might sometimes drool in your sleep, I can’t suck it back in or wipe my mouth, so I lay there with drool all over my chin. Off to a fun start right? I don’t have any way of signaling to a nurse that I haven’t awoken, so if no one is in my room and looking at me, I just have to lay there with my thoughts, unable to do anything for myself, unable to make a sound. On top of the drool, my diapers are always soaked in urine from the night, and I feel the coldness all over my body. Once a nurse finally comes in, they will usually wipe my
