A New Disease
Rosie finds herself trapped in the same room for one year
I know that Edward died in this room, I found the press cuttings when I was looking up the history of the house. Brewer’s Son Dies From Mystery Illness was the headline, above a fuzzy photo of an earnest-looking young man with a high collar.
It was back in 1911 that he had keeled over with a fever. His baby sister — Evelyn, the only other surviving child — was not allowed to see him in case she caught it too. He spent a few months lying here, sweating and raving while his parents tried not to weep in front of him, before expiring quietly and alone, as his mother was taking a nap and his father was at work.
That was before the Spanish Flu of course, before millions had died with no warning, sometimes simply falling over in the street and not getting up again. Back when his death had more weight, for being singular, rather than just another unfathomable number.
I lie here now, in a bed that faces the same fireplace that he must have looked at, the curtains shut to keep out the light, earplugs on the nightstand in case my kids talk downstairs, and wonder whether I’ll ever get up again.
I caught a cough, that was all. A nasty cough, to be sure, but I’ve had coughs before and survived. Only this cough isn’t like the others — this cough shut down countries and killed millions of people, leaving thousands of others who survived it, stuck, like me, without the energy to move. I should be grateful, really, that I didn’t die — so many others did — but on my dark days, I find it hard to see life as a good thing anymore.
Outside, spring gradually bloomed, and eventually grew into glorious summer. The lockdown lifted slightly, and Dean took the children went to the beach, leaving me at home. They came back suntanned and salt scoured from a day building sandcastles and swimming, or racing waves back to the shore. I love the sea. I used to surf, I used to run. I used to climb mountains. I used to play with my children in the shallows, splashing water at each other, or picnicking on the beach, and feeling the sand crunch between our teeth as we chewed on our sandwiches.
To start with I tried to push through it, I’d force myself to get up and get dressed, but the payback for that was horrific. The day after I’d be unable to move at all. If I use too much energy then the next day I just have even less, and it seems that ‘too much’ means ‘any at all’.
Now I can’t walk to the toilet; when I stand up, my heart rate shoots up to 180 beats a minute, my blood pressure drops, and so do I. Onto the floor, in a puddle of self-pity, which only makes me despise myself more. I am not weak. Only now, it seems, I am.
Dean washes me, he feeds me, he lifts me onto the chair in the corner while he changes the sheets, and then lifts me back into bed again, weakened from my attempt to sit upright for 2 minutes, and trying not to cry at the ridiculousness of it all. Crying uses energy too you see, so the more upset I get at how awful things are, the more awful things get.
After the first few months, I started talking to Edward out of boredom. Sometimes I can feel Mary sitting there, on the same chair by the window that I wait on while Dean deals with the bedding — watching her son lying in the bed as the fire crackles and casts shifting shadows around the room. But mostly I feel the weight of Edward, slowly dying next to me.
‘How did you cope, being here for so long?’ I asked him at the beginning. ‘Any tips?’
That seems silly now. As summer faded into Autumn and I missed Dean, Elsa, and Bella’s birthdays, my own passing in a haze of hushed girls whispering a song to me, I realise that I’ve been bed-bound for longer than Edward was.
‘Did it feel nice to die?’ I ask him now. ‘Did you feel sad to say goodbye to your family, or was it just a bloody relief?’
He smiles at me, with the same vacant expression from his photo in the paper, and closes his eyes again, sweat dampening his hair. ‘I’d probably have died in the Great War if I’d survived this,’ he says with an air of resignation.
Dean harasses the Doctors, but there’s nothing they can do.
‘Long Covid’s a new illness,’ they say. ‘No one knows what causes it, let alone how to cure it.’ They send him leaflets on CBT, and exercises to keep my muscles from turning completely to jelly. ‘Exercise is good for you,’ they say.
‘It sounds like Chronic Fatigue Syndrome,’ Dean says, trying to keep the pleading out of his voice, ‘you know — it used to be called M.E.’
The Doctors smile wearily, worn out by months of watching people die and being unable to help.
Why CFS would be a good thing I don’t know, there’s no cure for that either, and heavens only knows how I am meant to organise a CBT session in this state. I used to run marathons. I once spent a summer crewing a yacht around the Caribbean. Now, exercise is considered to be lifting my arms above my head and back. While I’m lying down. Once.
The old wallpaper fades through the paint again — a busy pattern of flowers and bees, swarming their way up vines which tangle their way around the room — and the firelight glints on the picture frames.
‘Try to get some rest, dear,’ Mary says, stirring in the chair by the window. ‘You’ll feel better if you can sleep.’
Edward thrashes out at a monster looming over him, and Mary takes a deep breath, returning to her knitting as an excuse to lower her head, hiding her expression once more.
‘Good news!’ Dean says as he creeps slowly into the room, trying not to make any loud noises or sudden movements, anything which might trigger a relapse. ‘There are clinics being set up to help people cope with Long Covid!’
Or, ‘There’s another article,’ which he’ll read to me, while I quietly tune out, to save my brain from cramping up again at the extra input it’s getting.
‘Coenzyme Q10 might help,’ he’ll say, or ‘there’s some evidence that vitamin D might play a part,’ ‘D-Ribose,’ or ‘Iron tablets,’ and I’ll be filled with a sort of hope for a few weeks until it becomes clear that we’re just throwing money at the wall.
‘Can we read you a story?’ Elsa and Bella creep into the room, optimistically clutching a book of fairy tales.
‘I’m sorry darlings,’ I say. ‘It’s a bad day.’ They smile, trying not to show their disappointment.
‘Do you want more water, Mummy?’ Bella whispers, and off they tip-toe again.
You’d think you’d get used to it, wouldn’t you? That after a while, you’d adapt to the new life you’re living and it’d be less painful. I mean, we all adapt to our circumstances, right? To start with there’s this hope that you’ll just wake up cured one day. There’s an image of summer in your mind, of a barbecue, of sunlight, of birds, and the scent of roses, and you will be there, enjoying it, healed.
But then through the curtains, you can see the days shortening, and you’re still here, in bed. You start to mourn your old life, evening missing the cramped smelly bus into the office and dealing with the petty rows and pointless politics once you get there.
Dean tried opening the windows for me one day, so I could at least smell the cut grass, but the noise of the neighbours’ lawnmowers, their dogs barking and children shrieking as they jumped into the paddling pool and flicked the hosepipe at each other’s hot skin, was too much. No one tells you how it feels when this happens, how it feels as if your head is going to literally burst open and spill your brains all over the floor if one more tiny sound happens. I swear I can hear the thud of dust settling these days.
‘How can you bear this?’ I say to Dean. ‘How can you put up with me being this useless! I’m worse than the kids, you have to do everything for me.’
‘I love you,’ he says. ‘It’s that simple. I will look after you for as long as you need it, I will look after you until you get better.’
I am temporarily reassured, but the nights are taken over with 3am fears that he’ll get bored of me. That he’ll miss the relationship we had so much, that he’ll go and find another me, someone who can go sailing, swimming, or sight-seeing with him again. Someone who can help him with the bills, the children, and housework, rather than add to the problems.
When Dean comes into the room smelling of cold air, damp leaves, and darkness, I know that summer has gone. I start to dream of being stuck in mud, I’ll try to pull myself out, but the harder I tug, the more I sink until I’m scrabbling along on my knees, yanking at the unstable ground with broken nails as it sucks me into it.
‘There’s next year darling,’ Dean says. ‘There’s always another summer, don’t worry. This can’t last forever; you’ll get better and we’ll have all the fun you couldn’t this year.’
I smile and ask how his day was, but beside me, Edward points out that things don’t always get better, and there isn’t always another summer. When Dean’s gone to feed the kids — telling them stories over the dinner table so that their laughter drifts up through the ceiling and out of my floorboards, leaving me feeling like an outsider in my own family — I tell Edward about M.E. ‘It might last for 30 years or more,’ I whisper.
He wisely advises me not to read my phone for a while, before pleading for a cold cloth for his forehead.
Christmas comes and goes. I lie upstairs listening to the shrieks of excitement as Elsa and Bella unwrap their presents, another of their milestones that I’ve missed, and try to fall asleep, just to pass the time. It’s ridiculous, being this tired and not being able to sleep. The idiocy of the situation is not lost on me — I’m too tired to move, my body crumpling under me if I attempt it, but I haven’t used enough energy to sleep, so I lie there, dozing, flitting in and out of consciousness, staring at the ceiling in the early hours, wondering when it will all end. Because it will at some point, whether it’s that I wake up healed, or the end is terminal like Edward’s was.
‘I used to feel sorry for you,’ I say to him. ‘Now I’m not so sure.’
Edward smiles at me and says, ‘you have a tree growing out of your head,’ and drifts away again on a cloud of hallucinations.
As New Year rings its way in, and I listen to Dean having a zoom celebration with friends downstairs, I start to plot my way out. I can ask for painkillers four times a day and simply horde them. After a week, I’ll have enough to dispatch me safely to the next world.
It’s a curious feeling, planning to murder yourself. There’s a relief involved, the pleasure of being back in control, of being able to call an end to the pain, the tedium, the misery. But also a sadness, a realisation that you will never again hug your children, kiss your husband. Never again see the sunrise, or feel the wind on your face. I believe that once they’ve got over the shock, it will be a relief to Dean and the kids. No more having to creep about, no more being silenced for laughing too loud, no more having to feed and wash me. They’ll be able to get on with having a normal life.
Am I being selfish waiting any longer? Should I just do it now? The tipping point will be when I’m so unable to bear this anymore, that I’ll willingly give up the things I used to love for the peace of death. After all, there’s a strong chance I’ll never get to experience them again anyway.
‘It’s a sin,’ Mary says sternly. ‘Only the Lord can end a life.’
‘Oh, piss off Mary,’ I say. ‘I’m sorry, I don’t want to sound rude, but you try having a sense of humour after nearly a year in bed!’
She sniffs disgustedly at me, picking up her knitting, ignoring the delighted sniggers of Edward.
The change came as slowly as the days began to lengthen, an almost imperceptible lightening of the sky, a second or so at a time. I sat up one day and didn’t have the whoomph whoomph of low blood pressure in my ears. I didn’t say anything to Dean at first, there’d been false dawns before, but the same thing happened the next day, and the next, and by the end of the week I can sit up for an hour or two at a time.
‘Don’t rush it,’ Dean says when I eventually tell him. He’s been mainlining everything he can find on the internet and is full of ideas about ‘energy envelopes’ and ‘pacing.’
‘Ha, pacing. I should be so lucky,’ I say. ‘I pray for the day I can pace somewhere!’ and Dean kisses me, relieved that I’m making a joke rather than snivelling again.
And this is how I find myself, after exactly a year in bed. Muscles wasted, skin flabby and pasty, self-respect in tatters after twelve months of being washed and fed, but finally believing the idea that I might one day feel the sun on my skin again.
‘I’m busting out of this joint,’ I say to Edward.
‘Lucky you,’ he replies. ‘Have a pint for me, won’t you?’
When I do get well enough to leave the house and go walk, I’m going to find Edward’s grave in the cemetery down the road. I will leave him a bunch of flowers from our garden, and sip a pint of ale in his honour.
‘I’m looking forward to it,’ Edward says. ‘I’ve been a bit lonely since little Evie died.’
My two children come rushing into the room, pulling themselves up short to tip-toe silently across to me. ‘Can I read you a book?’ Elsa says, clutching The Wind in the Willows in one small sweaty hand.
‘Will you wait while I try to get downstairs?’ I say, and they put my hands on their shoulders, their arms around my waist, and slowly, painfully, help me stagger towards the door.
Svetlana Smith 2021
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