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EST. READING TIME

21 minutes
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The trees are beginning to come alive again. Their gnarled branches blossoming with pale green and yellow leaves, some even spattered with small white buds. Funny how dead a tree looks without them, a grey-brown skeleton without muscle or flesh. Leafless trees are a thing of horror, twisting and creaking, but with them, they become luscious clouds of colour that drift and sway above us. I can see them, just, through the window of my living room. Along with the cars driving to and fro, they disorientate my already blurred vision. My driveway is empty. My house is empty, too, but for me. I used to have a nice carer who lived here. She would feed me and talk to me, but now it’s someone different, a man, and he only comes twice a day. What’s his name? I can’t remember. I can’t even remember the name of the lady anymore. She was pleasant to be around. Even this new man is okay, far more pleasant than me anyway. I mope about this house like the trees in winter; stiff and creaking. Still, at least I have flesh on my bones, though I’m running out of muscle.

My house is a bungalow. It has to be. It’s small and plain. There are no pictures on the walls or ornaments on the shelves. I couldn’t look after them if there were. The furniture is old and musty, but in good condition since they get next to no use. I’ve got handlebars for everything. One to get me out of bed, along with a board which allows me to slide into my wheelchair, several in the hallway and some to help me onto the toilet. Not that I use the toilet anymore. Now I have an adult diaper and a tube plugged straight into my bladder with a bag strapped to my leg at the other end. Disgusting. I don’t know why I had that done, no one wants their own faeces in their pants or to empty their own urine out of a bag. I can manage the toilet, but, I suppose, not on my own. When the lady left I stopped being able to do a lot of things. I still have a friend to help me, Deborah, and she comes to see me when she can. She says she’ll be here today and I hope she does come. I wouldn’t blame her if she didn’t. I don’t even want to be around myself.

A cloud passes over the sky and I’m temporarily dropped into darkness. A faint reflection of my face becomes apparent in the window and I look away from the gaunt woman looking back at me. I could get up and try to do the stretches I’m constantly reminded are important to keep my condition at bay, but even that seems like too much effort. I used to try to do everything they told me. I would get up in the morning and use my cane to get me around the house, sometimes even managing to support my own weight if I wanted a cup of tea, but when the fatigue kicked in, or I lost my balance, sometimes falling on the floor, I started to believe it wasn’t worth it. I had my kitchen refitted, low units so that I can reach them on my wheelchair. The only time I worry about falling is if I have to have a shower. I forgot to wear my lifeline once, a little pendant on a string that hangs around the neck, and I fell as I was trying to shower. I cried and called for help for an hour; I thought no one would ever come. Fortunately, my neighbour’s carer heard me shouting and came to my aid. The feeling of utter helplessness still haunts me now. Why wouldn’t it? I’m helpless even when I’m not lying, crying on the ground. What little I can do is a struggle and what I can’t do leaves me waiting for others to do it.

My bed can be a place of comfort, but it is also my prison. I managed to get out of it today, Deborah would be unhappy if she came round to find me lying down, doing nothing. So now I’m sat in my wheelchair in the living room, my head lolling back like a teddy bear with all the stuffing squeezed out of it. This is the newest symptom and one that scares me the most. What kind of human can’t support the weight of their own head? The same kind of human who can’t support the weight of their own body I suppose.

There are particles of dust drifting in front of my face, and a whole lot more settled on every surface in the room. Maybe Deborah will help me clean up the place later on, but maybe she wants to take me out. I don’t know what we said we were doing today, it was hard enough remembering that we were meeting at all. I can’t bear to be around all this dust, it’s a blessing I can’t do anything that would make any actual mess. Cooking is confined to ready meals, the packaging going straight in the bin, which Deborah takes out once a week. She must hate me. She resents our friendship, I know she does. We have good times where we talk and laugh, but when I’m in one of my moods she sighs and rolls her eyes when she thinks I’m not looking.

A woman is jogging around the street. I’ve seen her three times already today. She passes my house and I feel tears welling up that I cannot control. Wet streaks tingle my cheeks as they run down. That could be me. Couldn’t now, but could’ve been. I was never an athlete, never the sporty type to be honest, but since I can’t be anymore, I want to do it more than ever. How would that even work? Racing around the street in my wheelchair. Foolish woman, don’t even think about it. What the doctor tells me to do is hard enough and that only extends to stretching my limbs and clenching and unclenching my hands. That will keep me in shape. Like hell it will. I’m so stiff just to do it once makes me think of giving up and lying down again.

A car pulls up in the driveway, Deborah’s car, and I watch her get out. She’s a beautiful woman, so healthy for her age. I look down at myself in comparison. Sallow, stretched skin, near translucent. Deborah, on the other hand, has a rosy complexion, and meat on her bones; the lifeblood still flows through her. Her hair is dyed, she’s said, but still the vibrant colour doesn’t look unnatural and if it were grey, she could pull it off. Mine is greying not from age, but from stress. It’s thinner than I’d like it to be, but I don’t care enough for my appearance to do anything about it. I have to shake these observations from my mind as Deborah disappears from view, walking to the front door.

‘Sam?’ Her voice is alien after the morning’s silence, but bright enough that it draws a smile out of my pursed lips.

‘I’m in the living room, Deborah. Come on through,’ I say as, with some effort, I take the wheels of the chair with each hand and roll one back and one forward to turn myself towards the living room door.

‘I’m sorry, I would’ve come earlier, but the dog needed walking and Andy kept me on the phone for a good hour,’ she says as she bustles into the room, placing her handbag on the arm of the sofa and approaching me. She brings her arms forward and embraces me warmly. My own arms are too limp to return the gesture with the same enthusiasm, but I manage to bring them up to her back and pat it gently.

‘You look well. How are you feeling today?’ she asks drawing her arms back and seating herself on the sofa beside her handbag. My arms drop to my sides.

‘Now don’t tell lies, Deborah. I know I look awful, but I feel good. It’s nice to see you,’ I reply. Although my words are tainted with pessimism, I feel genuinely happier having her presence in the otherwise empty house.

‘Honestly, Sam, don’t be so hard on yourself,’ she responds with a worried expression on her face. ‘Have you eaten? I brought some food and I thought we could eat it out in the garden. What do you think about that?’

‘I haven’t no, and that sounds like a lovely idea. Tell me, how is Andy?’ She looks at me with a grimace when I mention his name. ‘That bad is he?’

‘Only as bad as ever. Silly man, can’t spend one day on his own.’

‘I know the feeling.’

Her grimace deepens at this response and I shift awkwardly in my chair. She gets up abruptly.

‘Shall I get on with the cooking? Do you need changing? Is the catheter full? Anything like that?’ Deborah can’t help but be helpful, I love her for it, but I know it’s because she thinks I’m incapable.

‘No accidents just yet. Let's get on with the cooking. I can help.’

She smiles reassuringly at me, understanding my message. Walking behind me she places her hands on the handles of my wheelchair. I turn around and touch her hand with mine.

‘Thank you, Deborah. What are we having?’

I let her push me out of the room as she explains the ingredients she’s brought and what she plans to do with them, trying to ignore the teasing thoughts of uselessness in my mind. I remind myself I really can’t do everything, and that I need to let her help me and take charge. She enjoys it, I tell myself.

I help as much as I can in the kitchen, sat in my wheelchair at the low worktop. She gets a chopping board and knife out for me and I get to chopping up the vegetables. We’re having an avocado and green bean salad, she tells me as she washes the lettuce. She likes to make sure I’m eating healthily. When I’m on my own it’s mostly ready meals for convenience and this distresses her greatly. It isn’t good for me I know, the doctor says I should avoid saturated fats in general but I just don’t have the energy to make myself fresh meals every day. My wrists feel stiff after the first pepper has been chopped but I resist the urge to complain and carry on regardless. Occasionally Deborah stops what she’s doing to look at me with concern, the pain must show on my face, but I keep my eyes on the task at hand and try to keep a smile on my face as she talks about her week and Andy’s troubles and all the other things that I know I’ll forget in a day or two. She’s probably told me some of these things before, but having a memory like a sieve means that I could hear them every day and respond with the same enthusiasm.

When the food is ready she plates it up for me and takes it out to the garden. I try to wheel myself out after her but the step at the bottom of the door impedes my progress and I’m forced to wait for her to come back. She laughs politely upon seeing my attempt and I laugh in return, trying not to be embarrassed. With a couple of bumps, I’m on the other side of the french doors feeling the sun on my skin and a slight chill from the calm breeze.

‘Did you want anything else before I sit down?’ she says, pushing down the breaks on the wheelchair.

‘No, this is excellent. Thank you, Deborah.’ I reply, looking up at her, ‘now come round where I can see you and let's enjoy this lovely meal.’

The meal is deliciously fresh, a rare treat for me. I leave half of it on my plate, but that isn’t unusual. My appetite is small, to say the least, and I feel drained after eating, rather than rejuvenated. We sit in silence for a while taking in the spring air and occasionally looking at one another, laughing for no reason. I live for these moments now. Just to have another human being in my presence and to feel wanted and needed by someone who functions normally in the real world, where I cannot. She makes me feel like I’m not wasting my time sitting on this earth. Although I still often speak about death with her. She frowns and looks at her feet, but I have to talk about it with someone. It’s something I have to think about a lot myself. Whether to live like this or die and be at peace. I can joke about it, so it’s not all negative. But most people don’t find those kinds of jokes funny, knowing there is a very real reason for why I’m saying them.

The peace we’ve been enjoying is interrupted by a sudden bowel movement. This is one of the worst parts of my condition. People take for granted being able to go to the toilet and clean themselves afterwards. If they knew what you have to go through when you don’t have that privilege, I think they’d praise God every time they sat down on the loo. If the smell didn’t already inform Deborah I tell her anyway. Without blushing she gets up immediately, takes the brakes off my wheelchair and wheels me back inside to the bedroom. I lost any sense of humility when all this started, having to allow a stranger to perform this very personal procedure so many times it’s not so bad when your friend has to do it. Deborah is okay with it as well and is kind enough to get it done without complaint, but sometimes it still gets to me that I can’t just say ‘I’ll deal with it,’ when nature comes to call.

She helps me off the wheelchair and onto my bed and I wince as I feel the motion disturbing the contents of the diaper. She pulls my pyjama bottoms down delicately, revealing my bare legs, the diaper and the catheter attached to my thigh. I can’t see it but I hope it isn’t an awful sight for her.

‘Okay, don’t worry Sam, I’ll be as gentle as I can.’ Deborah says as she pulls the rubber gloves from a box on the side and pulls them over her hands, the elastic material making a slapping sound as it snaps to her skin.

I try to keep my expression placid, but even though I lost my dignity a long time ago, this compromising position in front of a friend is hard to deal with. She unfastens the straps on either side of the diaper and pulls the flap down between my legs.

‘I’m just going to roll you over now.’

Pressing me softly on one arm, she rolls my frail form over and I feel the diaper being stripped away from under me. She lets me back down onto my back and I see the package in her hands, which she handles tentatively.

‘I’m sorry about the smell,’ I say, pursing my lips as I can see her nose twitch.

‘Really, Sam, I’ve had five kids, I’m not going to get squeamish now.’

She leaves the room and a moment later I hear the clang of the pedal bin. She returns with a tube of cream and a fresh diaper.

‘Okay I need to roll you over again.’ I sigh in mock exasperation, which causes us both to chuckle. She pushes me over once more and I feel the cold shock of the cream being rubbed against my skin. I close my eyes. The fresh diaper is slipped underneath me and she allows me to lie back down again. Pulling up the front flaps, she fastens the straps and claps her hands.

‘There we go. All done.’

‘Thank god for that,’ I remark, shifting to find a comfortable position in the new diaper. Deborah makes a small exclamation when she realises my pyjama bottoms are still down.

‘Sorry, I forgot,’ she says as she lifts my bottom slightly and pulls the pyjamas back up. ‘Shall we get you back into the wheelchair?’

‘Actually I’d like to put some day clothes on. Could you help me?’

‘Of course,’ she goes to my wardrobe. ‘Would you like a dress?’

‘No, no. Just a t-shirt and jeans will do.’

She pulls out a plain white t-shirt and a pair of baggy jeans from the drawers of the wardrobe. Coming back to me she places them both at the end of the bed.

‘Okay, I need you to sit up now. Can you do that?’

‘Of course, I can. Come on, girl.’ But when I actually try to sit up my arms cave underneath me and I fall back onto the bed, grunting in pain.

‘I’m sorry, Sam. I shouldn’t have let you do that on your own.’

‘You weren’t to know. You know what, don’t worry about it. Just help me back into the chair.’

‘Really? I’m happy to help if you-’

‘No, no. Please don’t. I just want to go back to the living room now.’

I have to hold back the agitation creeping into my tone, but it’s becoming difficult. Little things like that can tick me off and Deborah is treating me particularly delicately today. I know she only does it because she cares and I try to be grateful for these horrible things that she has to do for me, but sometimes the frustration of not doing them yourself becomes overwhelming and you start to see red. I can see she’s frustrated as well, but I can’t think of what to say to make it better. I remain silent as she hoists me off the bed, supporting me as I pull myself across the transfer board and slump back into my wheelchair.

The diaper change has irritated me, and I can’t hold it back. After sitting in the living room with Deborah, responding very little to her chatter, I tell her I need some time alone. She looks upset but I’m in no mood to make her feel any better and I let her leave with a curt goodbye. Sometimes seeing her and her fully functioning body can drive me up the wall. It isn’t her fault. Of course, it isn’t. It’s mine. My body has done this to me and I can’t do a damn thing about it. At times like these, all I want to do is die, for my sake and everyone else’s. What is the point in me? Where is my place in a world of moving, working, living people? In the house apparently. In this bloody chair. Sadness grips me as I watch her get in the car and drive away.

The sun is setting now and the gloom only adds to my moody state. After a few minutes, guilt begins to creep in and I find myself regretting telling her to leave. Now I’m not just sad, I’m lonely too. You’d think someone who spends so much time alone wouldn’t be bothered by it anymore, but it’s worse when you get a fleeting glimpse of what your life could be like and then it’s taken away from you. Worse yet when you were the one who inflicted it on yourself.

After having a little cry I’d drifted off to sleep, but I’m jolted awake by the arrival of a man who steps into the room, causing me to yelp when he switches the light on.

‘Hello, Sam. it’s David. Are you okay?’ His calm tone should soothe me, but I’m scared and confused by his presence.

‘What are you doing in here?’ I say, my eyes unable to focus in the sudden brightness.

‘I’m your carer, Sam. I was here this morning,’ he replies patiently, sitting down on the sofa. As my vision returns, I see he has the carer’s scrubs on and a badge clipped to the elastic around his waist. He’s relatively tall, which at this moment I find imposing, and has dark hair. I have trouble making out his face.

‘Oh- yes. Sorry, I- I dozed off.’ My head is beginning to clear, but as it does the pain of lying awkwardly in this chair seeps into my muscles and I fidget groggily on the spot.

‘You look uncomfortable. Do you want me to put you in bed? I can bring you dinner there.’ I stare at him, straining to recognise his face.

‘What did you say your name was?’

‘It’s David. I think we should move you. How long have you been sitting here?’

I don’t know why he’s questioning me, but it makes me feel uncomfortable and I don’t respond.

‘Well how about I go and prepare a shower for you? That might help. Then we can get you into bed and I can make you some food.’

He gets up and leaves me in the room. I wish he hadn’t turned the light on. It’s dazzling my eyes and disorientating my brain, making it hard to focus on memories. He could have been here this morning, I trust him, but I can’t remember it myself. I want to move, but my aching muscles refuse to respond. The sound of spraying water comes from the bathroom. I want to shout to the man, but I’ve lost his name already.

‘Excuse me. Excuse me.’ I call out. The man pops his head round the door.

‘The shower is ready if you’d like to have it now?’

‘I’m sorry, I just- what was your name again?’ My eyesight clearing I can see the muscles in his tanned and youthful face tense in frustration.

‘Sam, my name is David. I’m really sorry but I’ve got three more people to see this evening so I’m going to have to rush you a little bit.’

‘David. Yes, that’s right. It rings a bell. I’m sorry it’s just your face doesn’t seem familiar.’

‘I assure you, Sam, it has changed since this morning. Now shall we get you in the shower?’

He walks in, goes behind my wheelchair and I feel myself moving forward in its frame. It terrifies me to not know who I’m talking to and to be in a position where I have to trust that the person in my house is someone I know and not a stranger come to do me harm. As it is I have to believe what people tell me is true. I miss my old carer, she was very kind and I always remembered her. Then again, as my condition has deteriorated it’s become harder and harder to recollect these things. I can’t even picture her face.

The process of having a shower is a sluggish one, but it is at least something I can do on my own. The room is steamy when we enter and the carer, David, removes my pyjamas, saying he will get me a fresh pair from the bedroom when I’m showering. While I’m still sat on the wheelchair he unfastens the diaper and puts his rubber gloves on to empty my catheter bag.

‘So have you had a good day? Did your friend come round?’ He says as he lets the yellow-brown liquid pour into the toilet, before attaching a fresh bag to my leg.

‘Did I tell you she was coming round today? I suppose I did. It was nice, thanks. Can I get in the shower now?’

I don’t want to talk to him right now, I still feel quite uncomfortable and his cold hands on my naked body make the hairs on my skin bristle.

‘Well, that's good to know. Yes, you’re all set. Will you be okay on your own?’ I’ll be far better without you around, I say to myself, but I nod politely to him and he helps me over to the seat in the shower.

The warm water flushes over me and I feel the aches ebb away as the heat soothes the muscles in my body. I take a plastic loofah from the small shelf beside me and squirt soap into it, rubbing and scratching my skin gently, taking care to stroke the place where the catheter inserts into my belly in a downward motion. After this is done I sit for a while, feeling calmer and empowered now that I’ve done something for myself. I’m a little embarrassed for my behaviour towards the carer, and memories of my treatment of Deborah earlier today are beginning to return. I can’t help it and I know that. The carer is just doing his job and will probably forget all this when he’s left. I suppose he has to deal with it every day. Deborah will understand. I’m sure when she left she sighed and rolled her eyes, and is happy at home doing whatever she does. Maybe she went to see Andy and look after him. That would be nice for her.

Before long there is a knock on the door and I know it’s time for me to be hoisted back into that accursed wheelchair again. I take a moment to reply, basking for a little longer in the warmth of the pouring water.

‘Is it okay to come in now, Sam?’ I hear through the door.

‘Yes, come on in.’

He opens the door, holding a couple of towels. I press the button beside me to turn off the shower and instantly the cold spreads through me. I shiver uncontrollably.

‘I thought you were going to turn into a prune,’ David says, eyes wide in a look of disapproval.

‘It was very enjoyable for a while there,’ I say, smiling at him for the first time.

‘I’m glad,’ he says, putting one of the towels around me. ‘Well this should keep you warm while I dry your hair a bit.’

He rubs my head gently with the other towel, taking sections of hair and squeezing them with it before running them between his hands through the towel.

‘Thank you, David. You’re very kind.’ The shower seems to have cleared my mind somewhat and I feel like my mood is brightening. I begin to recollect memories of him as the name starts to stick. He’s a polite man, young and generally upbeat. He can be a little gruff when he’s in a rush. This is probably one of those times.

He doesn’t try to help me when I start to dry my own body, still sat on the chair in the shower. But when he sees my limbs failing and the towel dropping in the pool of water at the bottom of the shower he helps me up and sits me on the toilet, taking the towel and continuing to rub my body dry.

‘Dinner is ready when you are. I think we should get you into bed first and then I’ll bring it to you on a tray.’

I ask him questions about his day as he moves me about, fastening another fresh diaper around my pelvis, pulling my pyjama top over my shoulders and the bottoms up over my legs.

‘Ah, y’know, it’s the same as any other day. People are generally well behaved. You get a few people being difficult.’ He looks at me when he says this, but his expression is cheeky, rather than accusing.

‘I’m sorry, I get a little out-of-sorts some of the time. I’m sure you’ve seen it before.’

He laughs and says he’s not really allowed to say. Once I’m back in my wheelchair he wheels me to my bedroom. The pungent smell of fish and vinegar fills my nostrils as we pass the kitchen.

‘What have you made me for dinner?’ I ask, turning my head round to see him.

‘Smoked haddock, new potatoes and a small side salad. I can’t say it involved much effort on my part, but I hope you enjoy it.’

Leaving me in the bedroom briefly, he returns with a tray of food and a glass of apple juice, putting them to one side so that he can plump up the pillows before helping me to bed. He prop me up in a seated position, places the tray on my lap then sits on the small chair opposite me.

‘So, we haven’t talked about things for a few days. I want to know, how are you coping?’ He says this lightheartedly, though his tone fails to hide the look of concern on his face.

‘Everyday is a struggle, and not having my twenty-four-hour care makes things difficult, but I’m fine.’

‘Are you doing the exercises the doctor advised you to do?’

I give him a steely look before responding.

‘I do what I can. These things I’m told to do aren’t easy for me. My condition is not so good at the moment and movement is difficult at the best of times. If I had a carer here at all times maybe I would be more inclined to try, but on my own I get into these moods that I can’t escape. Sometimes I can’t even lift a cup of tea.’

‘I’ll let the consultant know that you’re not dealing with things too well. From what I know you’re currently not in the worst phase of your illness so they won't allow you constant care, but if you think things are deteriorating I would advise you to call the doctor and let him check you out. I can’t guarantee he’ll say any more than your usual consultant, but it might help your case.’

‘Thank you-’ I pause.

‘David,’ he responds with a grin.

‘Yes. David.’

With that, he gets up and leaves me to my meal. I eat slowly, and once again I don’t finish the whole meal, but as much as I can. The food tastes good and I want to eat more, but my stomach feels a little unsettled. I can hear David bustling around in the kitchen with clattering pots and running water. When the noises cease he comes back in and takes the tray from my lap, putting it on the side again and rearranging my pillows so I can lie down.

‘Okay I’ll be back in the morning, and if not me it’ll be Grant. I’ve cleaned up in the kitchen and I’ll turn the lights off when I leave. Goodnight, Sam.’

‘Okay, very good. See you.’ My voice is relatively distant and I’m already dozing as he turns off the light and leaves the room. The aching pain threatens to return, but tiredness drags me down deep enough that I can ignore it. The last thing I hear is the slamming of a door somewhere close by.

*

I’m jogging, panting hard. Every breath coming sharp and short. Sweat drips down my forehead and strands of hair stick to my face. I push harder, ignoring the urge to stop, pressing on, faster and faster. The path seems endless. Tight lycra flexes as the muscles in my body pump like a steam engine and each nerve screams with the strain. My vision is full of a hot red flush and my nostrils fill with the smell of salt. I’m running full pelt, unstoppable. I could do this forever.

Then the lycra stops flexing and starts to stiffen. My muscles seize up and the red flush obscures the path before me. I’m slowing down, limbs still pushing against the stiffening fabric, but unable to break free of it. I feel one side of my face begin to sag and my head lolls uncontrollably. My legs give way, and when I fall my arms don’t have the strength to stop the blow.

I’m paralysed. Lying on the ground, I stare into darkness. Pain and fear twist and contort my insides, but my exterior remains still. The urge to move, to run, is still there. I can’t ignore it, but there’s something that won't let me obey. The rigid fabric tightens and spreads, encasing my entire body, squeezing the breath from my lungs. I’m dead. I must be. What else could do this to me? Still, the urge goes on; to move, to run and just keep on going.

Sean Joyce is an aspiring, as-of-yet unpublished, writer drifting somewhere between London and Brighton.

Published on July 10, 2016.