Keeping Joy

By Morven-May MacCallum

In this stunningly insightful and humours sequel to Finding Joy, Keeping Joy explores the long terms consequences of chronic illness. Through the eyes of Joyce, Aunt Beth and Logan we follow Joyce’s fight to regain her health and her freedom after nearly a decade of being housebound with Lyme disease.

• Language: English
• Publisher: Brown Dog Books
• Release date: Aug 31, 2023
• ISBN: 9781839525667

Book preview

Chapter One

JOYCE – AGE 23

So, do you? Do you take it for granted … the simplicity of simply being able to breathe? Because I don’t … I draw this secretly abused substance deep into my lungs with indulgence. And, after so many years of being trapped inside, I forever hunger to consume it.

The heat of the sun warms me until I’m glowing from the inside out – radiating something good rather than bad inside me. The glorious heat banishing the perpetual chill I’m so used to living with. I tip my head back so that the sun shines fully upon my face, the brightness turning my world into a merging shade of orange and red as the light filters through my closed eyelids. I slouch down a little on the bench, in the back garden, allowing the top slat to take the weight of my head. The peeling paint sharp against my skin. Somewhere in the distance a tractor is pacing the fields which surround my aunt’s cottage, the hum of its engine a dull undertone to the chitter of the birds around me. I don’t need to open my eyes to picture the mountains in the distance, the tractor nothing but a small dot in comparison. I could once have told you all the different tracks up those mountains but now I don’t know if they exist.

With a sigh, I put my sunglasses back on before opening my eyes to the world again. Despite the dark lenses, my sensitive eyes squint against the light. The peeling paint of the bench I’m meant to be refurbishing scratches at my legs as I sit up. I lean forwards in an attempt to summon up the energy to stand.

‘Hi,’ I whisper, reaching out my hands to Dog, who’s gently padding his way towards me, my fingers instantly lost in the thickness of his fur.

Dog, my constant companion, is as big as a retriever and as hairy as a husky.

With reluctant legs, I head to the bottom of the garden, towards the shed to get some sandpaper, Dog happily following alongside me. I pull at the door, yanking at the warped wood until little by little it gives. Standing in the doorway, I pause to look about the gloomy shed, the only source of light coming from a grimy window covered in dust and cobwebs. I stare at the blurred figure of myself in the dirty glass, the auburn hair, the starkness of pale skin, my aunt’s baggy old gardening coat … I look like a fashion mannequin gone wrong. Slowly, I allow my gaze to travel from object to object. I step deeper into the shed, so that I can get a closer look at the workbench, which houses boxes of nails, brushes, sandpaper, spare parts that will probably never be used and pots of partly used paint in various colours.

I shiver in the cool air. Wrapping my arms around myself, I continue looking around … lawnmower, tools on the wall, boxes of nails, sandpaper, boxes … but what am I here for?

I slowly spin around on the spot, trying to work my mind.

‘Come on, what was it?’ I mutter.

I step towards my old mountain bike, my fingers affectionately tracing the shape of the seat and creating tracks in the dust. I spent so many hours on this thing, just Dog and I, our legs racing to outrun each other. I had to save my waitressing wage for fourteen weeks to pay for this bike. I was so proud of it and now here it lies in a dusty coffin.

I’m three chapters further into the book I’m reading when I shift my weight on the bench, the curling paint chips protruding into my bare arms abruptly reminding me of what I’m meant to be doing.

Ten minutes later, I drag the rough paper over the wooden slats of the bench, the gritty sound uncomfortable to my sensitive hearing. I ignore the pain which shoots up my wrist and forearm with each stroke and the aching in my shoulders, knees and back. My eyes, originally mesmerised by the gathering dust, are now unseeing. I just work, switching from one arm to the other when one gets too tired, my arm moving in a rhythmic motion in time to the thoughts I can’t escape.

I pause to catch my breath. Assessing my work as my chest heaves under the effort my exertion is costing me. My arms hang like dead weights by my side as I straighten my back and listen to it crack like riffle fire. I still have half the bench to go and I’m spent. Four weeks ago, I did the exact same work on the table, only it was bigger and harder to sand but the effort this bench is costing is twice as much and that realisation is an uncomfortable one.

My eyes follow a lone bee as it hums past me and settles on the chaos of coloured flowers Aunt Beth asked me to plant up last week – another task which was more effort than it should have been. She was so fervent in which flowers were to go where but I think they look ridiculously ludicrous.

Dog comes over and sits beside me. His dark eyes survey me knowingly.

‘I’m not getting sicker,’ I tell him stubbornly, resting my weary arm around him. He simply looks at me, his head tipped to one side and his brows raised. ‘I’m not.’

I lie back on the slabs and close my eyes, allowing the warmth they’ve collected from the sun to leech into me, the heat within them oddly comforting.

‘I’m not getting sicker,’ I whisper into the sky, as the rippling in my forearm continues and as the heady weight of my body sinks deeper into the ground.

‘I told you I’d finish it,’ I state to Aunt Beth, two weeks later.

Trying to ignore the fact that it only took me two days to do the table – one to sand it and one to paint it.

‘It looks great, you’ve done a good job on it,’ Aunt Beth says, examining it from the kitchen window. ‘Listen, I thought, seeing as I’m not working until later, that maybe we could finish decorating your room today?’

I pause, considering my rate of tiredness versus my desire to get my room finished so I can move back upstairs.

My Aunt Beth, who I’ve lived with since my parents died when I was seven years old and who has frequently been mistaken for my mother, was delighted when I started to show signs of wanting to decorate my old room. She makes no concealment of her desire to get her dining room back. It was converted from the dining room to my bedroom when it became blatantly clear that my illness was not the temporary inconvenience the doctors said it would be. Aunt Beth had been rightly worried about me managing the stairs when she wasn’t here and she struggled to help carry me up them each night. So, the dining room was taken over by a new sofa bed. It was meant to be ‘just for when I needed it’ but it quickly became my permanent residence. Aunt Beth’s belongings and mine continuously jostle for space as the room tries to maintain its identity.

‘Yeah, I suppose so,’ I say.

Aunt Beth squirms in her chair before adding, ‘I had an email confirming the time for the phone consultation on Tuesday.’

‘What consultation?’

‘To get your blood results.’

‘I thought they … ehm … that they came through the post?’ I say with confusion, leaning against the kitchen worktop to counteract some of the aching building in my knees.

‘They did …’ Aunt Beth says, a little sharply, before stopping herself and adding in a softer voice like I’m a simpleton who can’t help their stupidity. ‘They came through and you decided you didn’t want to open them until we had a phone consultation booked – which I’ve booked. So, shall we open them?’

‘No.’ The swiftness of my reply surprises even me.

‘We need to look at them, Joyce.’ Aunt Beth sounds battle-worn, as though we’ve had this fight before.

‘We may as well wait and see what Dr Hopefield says,’ I tell her, unable to meet her gaze.

I don’t remember deciding not to open the results, I don’t remember the conversation around it and I certainly don’t remember the results arriving in the first place.

‘Joyce …’ Aunt Beth starts but pauses again. ‘I know you don’t want to go on more treatment but I know you’re getting worse and that’s only from what I’m seeing – so I’ve no idea how much worse it is given that you’re the one feeling it.’

‘I’m not getting licker … sicker … I’m getting busier. That’s what you wanted – remember?’ I snap, walking out of the room before Aunt Beth can reply.

The results will be fine. I am not getting sicker. I’m not.

Chapter Two

LOGAN – AGE 23

I glance over the message on the screen of my phone, inwardly cringing at it. Joy messaged a couple of days ago to tell me her test results from the private hospital … they weren’t good and neither was my awkward reply of ‘at least now you’ll have time to watch Men of Shadows’. I scroll down to the last message, Joy’s resounding ‘thanks but not today’ to my self-invitation to come over earlier making me pause … hedging my bets at how mad she’ll be at me for just turning up at her house.

‘Sod it,’ I mutter, turning the key and waiting for the old engine to splutter into something resembling life.

I know from the bluntness of her message that she’s not ok; despite her saying otherwise. It’s hard to know how far to push Joy, when to leave her alone because she’s not well and when to not leave her alone because she’s feeling low – the two are so closely connected that it’s not easy to tell them apart.

I turn right at the junction out of the farm and head down the single-track road towards her home, drumming my fingers on the steering wheel while the sun blasts down upon every surface it can touch.

I don’t allow myself to pause as I turn into Joy’s drive. So instead, I quickly turn off the engine, jump out the truck and head straight to the front door but, before I can get to it, Dog comes to greet me with his customary bum wiggle.

Patting his head, I take a breath before following him to the back garden – knowing that wherever Dog is, Joy will be too.

I catch sight of her sitting on a low stool, a paintbrush in hand and an open tin by her feet as she paints the bottom panel of the shed. An oversized red chequered shirt, with splatters of different colours of dried paint, adorns her body. At first, I think that’s all she’s wearing but as she stretches to reach further along the panel, I see she’s in shorts – her pale legs almost blindingly white in the sun.

‘Hey,’ I say brightly, as I approach her.

‘Hi,’ she says, without looking round.

She must have heard me arrive, I decide; Joy’s too anxious these days to not investigate any noise she’s unsure of.

‘… You ok?’ I inwardly wince … stupid question.

‘I’m fine.’

I pause, awkwardly glancing around the garden as though I’ll glean inspiration from it.

‘Want a cuppa?’ I ask, sounding like my mother.

‘I just want to get this done before …’

‘… Ok,’ I say quietly.

After a moment of hesitation, I head into the shed and rummage around until I find a paintbrush which has definitely seen better days. I crouch down beside her and dip my scruffy brush in the tin and start to paint. Joy pauses to watch me. I try to pretend I don’t notice. I try to act like this is completely natural, a prearranged event, but nothing feels normal … even the brush in my hand feels alien. I’m about to dip my brush in the paint again when Joy gets to her feet and slowly disappears into the cottage. I pause, my insides sinking. I should have known not to come. I’m about to get up and leave, with some excuse about helping my dad on the farm, when she reappears with another chequered shirt and hands it to me.

‘… Thanks,’ I say, pulling the shirt on over my t-shirt. ‘I don’t think your red one would have brought out my eyes.’

I glance at her, as I say it, to see her lips pulling together as though to resist a smile and then she finally looks at me, her eyes mingled with so many emotions it’s hard to discern them all; sadness, pain, humour, but I think what I see most clearly is gratitude.

‘Suits you,’ she says meekly, tucking a clump of her dark auburn hair behind her ears.

‘You think?’ I say, grabbing the corners of the shirt and pulling them out from my skin like a skirt.

‘You’re an idiot,’ she scoffs but with a small smile.

I shrug and pick up my brush again – I don’t mind looking like an idiot if it makes her smile.

Joy works quietly, methodically, going over all the bits I’ve missed, trying all the while not to make it obvious that she’s doing so but within twenty minutes I’m beyond bored.

‘Tea break,’ I order, getting up and heading into the cottage. ‘Human tea or rabbit tea?’

‘Ehh,’ Joy ponders, looking at her work, as though comparing the effort against what beverage she deserves in exchange. ‘Human tea.’

I nod and head inside, navigating the small kitchen with the familiarity of someone who’s more than just a guest despite not being an inhabitant.

I snatch glances of Joy through the kitchen window as I make us a cup each. It’s hard to think that within a few weeks or so that she’ll start treatment, and go back to being that bedbound shadow that she fought so hard to be free from. I rub my ribs as I wait for the kettle to boil, feeling like the strike of her news has ricocheted off her and hit me too, as though I have a dulled version of the wound she’s just been blown. I honestly don’t know how she’s still standing.

When I step outside, juggling two overfull mugs, she’s already sitting on the bench waiting for me.

‘So … how are you?’ I ask, handing her a mug. ‘And don’t say fine,’ I cut her off as the words form on her lips.

She sighs.

‘Say it. Whatever it is, you can say it.’

She shrugs one shoulder and looks down at the mug cradled in her hands. ‘I don’t know what you want me to say.’

‘You must be angry,’ I hedge, thinking of how I feel on her behalf.

She exhales a short breath from her nose and tilts her head slightly in a way that lets me know that I’ve said something stupid.

‘Spit it out,’ I nudge her gently.

She pauses, as though thinking of how to say what she wants to express. ‘I am angry somewhere, it’s just exhausting to feel it and I can’t do anything with it … I can’t get it out of me so what’s the point … I’m more worried about the day when I am well enough to feel it.’

‘… Maybe you need to find little outlets for it, every now and then, so it doesn’t build up,’ I suggest.

‘Like what? I can hardly go for a run … I tried that – remember.’

I grimace, unable to stop the memory of sitting by her hospital bedside for hours on end after she attempted, I suppose she also succeeded, to prove the public doctors wrong about her illness not being in her head … not that it helped. They still wouldn’t treat her but it set Aunt Beth on the trail to get her private treatment.

‘Yeah, not your best move,’ I say, my voice muffled as I bring my mug up to my lips to take a sip.

We lapse into silence, Dog panting by our feet.

‘That shed is a disgusting colour by the way,’ I observe, glaring at the vile brown shade like faded muck which is slowly drying in the sun.

‘At least you don’t have to look at it,’ she retorts.

‘I do when I visit,’ I mutter.

‘Yeah, well, you’ll be back at uni soon. Besides, shouldn’t you be with your family?’ she remarks, sipping her tea.

‘Just wanted to check in,’ I say, gently.

We fall back into silence but my mind is whirring.

‘Back in a minute,’ I say decisively, downing the last of my tea and handing her the empty mug.

I race back to the truck and, even though there’s no need to rush, I hastily open the passenger door and rummage inside my rucksack. Locating what I’m hunting for, I sprint back to Joy. I throw her the boxes I’ve taken from my bag and wait for her reaction as she examines them.

‘Condoms … really? I appreciate the offer but I think that would be crossing a boundary. Also, why have you got so … ehh …’

‘Many?’ I venture. ‘We were going to prank my brother for his birthday but it never really happened so …’ I point to the shed.

‘I don’t think that would be comfortable,’ she says dubiously.

‘What … no. Paint bombs,’ I say proudly.

‘Are you serious?’

‘Yup, gets your anger out, makes the shed colourful, uses up all those tins you have in there, which, by the way, I remember being there when we were in school and we can always paint it over so Aunt Beth won’t go mental.’

I can feel the anticipation in my muscles … preparing to duck the condom boxes which I’m certain she’s about to throw at me. A part of me even hopes she does, just so I can see a little glimmer of the Joy she once was.

‘I’ll get a funnel,’ she says instead.

‘Put some effort into it,’ Joy mocks, ten minutes later, throwing a paint-filled condom at the shed.

I watch as it hits the wooden frame, the condom stretching like dough before bursting, to splatter peach paint on the shed walls.

‘I didn’t think they’d be so robust,’ I say defensively, taking aim and hurling the slimy condom which once again hits the shed, bounces off and lands pathetically on the grass.

‘You clearly got all the ones from the cheap box,’ I try to justify, striding off to collect my unbroken condom bomb, as Joy’s burst bright pink upon impact.

‘Put your anger into it,’ Joy says as I return, mimicking my earlier words back to me.

After a few more failed attempts, I get the knack for getting the bombs to burst and before long the shed is a multicoloured rainbow that would have put Joseph’s jacket to shame.

‘Last two,’ Joy says a little breathlessly, her arms lagging as she tries to pass me one. Her hand falling too far to the left and then the right as she tries and fails to locate my hand.

‘Ready,’ I say, taking it from her instead and trying to ignore what I’ve seen. ‘Three, two … one.’

We hurl the bombs with all we have and watch as they land just under the newspaper-covered window, the paint slowly running down the wall to merge with the other colours.

‘We should sign it,’ she suggests.

‘Mhhh … I’m not sure I want your Aunt Beth to have evidence of my involvement in this.’

‘So, did that get any of your anger out?’ I ask, nodding towards the shed twenty minutes later as we sit on the patio with a rabbit tea each.

‘I think I got something better out of it instead,’ she says with a small smile but her words are sombre, her moment of joy somehow filling her with sadness.

‘I don’t know what to do,’ she says abruptly.

‘About your treatment?’ I hedge.

‘Yeah,’ she says, running her fingers along the sandy grout of the slabs.

‘I guess … I guess, you do whatever you need to do to get the best life that you can have,’ I tell her.

She stares at me like I’ve been replaced with a stranger.

‘I know,’ I say in surprise. ‘I’ve no idea where that came from either.’

She smiles a little and shakes her head in disbelief. ‘How do you do that, though, when you don’t know what either of the outcomes will be? The treatment will make me so much worse but so will staying off it … the only difference is the time frame,’ she explains, as plainly as if she were giving a weather update. ‘Sorry,’ she says stoically, her hand once more tracing the slabs.

‘Everything will be ok,’ I say as brightly as I can, putting my arm around her and pulling her to me.

I feel her warmth against me and silently sigh, wishing that my words were convincing enough to fool us.

Chapter Three

BETH

Count to three, this life is for me. One, I’m numb. Two, I’ve gone dumb. Three, I can’t stop thinking. Count to three, there’s still more to see. One, where’ve you gone. Two, I know what you’ve done. Three, is for overthinking. Count to three, this life is for me …

I repeat the words over and over again, trying in vain to remember the rest of the rhyme. I used to say it to myself when my husband and I got divorced. I never understood how dark the other side of him could be until then … I never knew I had a darker side myself.

I slowly take a sip from my cup, allowing my eyes to survey the perfectly manicured garden of my customer’s home. I finished work ten minutes ago but the lady who owns this fine Victorian house insisted on making me something to drink before I left; so, I asked if I could take it in the garden and she seemed pleased by my suggestion to do so. I follow the gravel path, enjoying the gentle crunch the expensively fine gravel makes underneath my feet. I think of my partly tarred (which was already there when we bought the ground) and ugly bog-standard stones back home; which have been down so long they’re now compacted solidly into the tracks my tyres make.

I can’t help but make a mental note of all the things I want one day and of all the things I don’t. In my fantasy world, I don’t have a sick niece who was misdiagnosed for years, while the illness inside her devoured her physical and mental strength. I don’t have a house I had to re-mortgage to pay for the private treatment to keep her from dying. I don’t go home each night exhausted after working every hour that’s given to me as an electrician.

In my fantasy, Joyce’s illness would be diagnosed and treated early and, as it should have been, she would have recovered within six weeks. She’d even have graduated from university by now. And me, well, I wouldn’t have had to watch my sister’s daughter almost die under my care. In my fantasy, I get to live a life that’s lived for me and not for her.

I pause to take a sip as I admire the neatly cut hedges, the expert lines of the borders and the flowers so pleasantly arranged within it … and then I think of my weed-ridden, overgrown, colourless, unmanageable and untameable jungle back home; which isn’t even half the size of this woman’s perfect garden.

I shouldn’t complain. Joyce spent ages carefully planting up the flower boxes, which had still contained the corpses of the flowers from the previous year, I didn’t have the heart to pull them up to coordinate them so that the colours didn’t clash. It’s my