The Lockdown within Lockdown

admndaretwrtStories About Change

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Lockdown has been hard for everyone. But Jessica, 6 years old, carries a particularly heavy load. Her father, Alex, has motor neurone disease (MND). During lockdown, all day, every day, Jessica has been loving him. Sitting with him. Laughing and crying with him. Scratching his chin. Massaging his head with argan oil.

       She knows how to be positive. She tells him, ‘You may be like this but you can still do my schooling with me. You can still enjoy football on the telly.’

       She keeps one vigilant eye on her dad all the time, checking him in case his arms fall off his chair.
In case he needs a pee and she needs to call Mum, who will run into the room with his bottle.
In case he starts to choke.

       When Alex needs a drink Jess will go to the kitchen and bring his vitamin-packed smoothie from the fridge – a thick, black concoction, full of green veg and raw beetroot. He drinks it through a straw. It keeps his immune system strong and feeds those deteriorating muscles, so that he can live another day to be with his girls: his wife Jo and two young daughters. They all watch over him. Watch over him, as he watches over them.

       This watching is a full-time job for all of them.

       Rebecca, the youngest of the girls, is fifteen months old. She learnt to walk during lockdown. She has a permanent smile on her face. Today she runs to pick up her dad’s arm as he intentionally allows it to flop off the chair. She holds it with both hands and heaves it back up.

       ‘Thank you, my darling,’ says Alex, his voice thick and difficult.

       Rebecca is pleased. It’s their game.

       She knows her dad can’t use his hands or raise his arms.

       Alex would much rather be playing ball or throwing his daughters up into the air. Ten years ago he was swimming with sharks in South Vietnam, teaching people to dive, in the sea, off Nha Trang. When he was twelve, he was the Amateur Athletics Association British long jump champion. Today he is competing in another challenge. Something he cannot win.

       At lunchtime, Rebecca, who is still learning to feed herself, wrestles the fork from her mum. She wants to feed Dad, and so she does. Pushing the fork into his mouth, maybe too fast, maybe at a strange angle. Some food falls down his face, but she is doing her bit to help. He smiles and nods, bends his head and kisses her.
She’s happy.

       Alex is a beautiful, thoughtful person. Full of fun. His presence still lights up every room. But MND has changed his thinking as well as his body. He is deeply frustrated. He worries about leaving his girls behind. What will become of them? He can’t bear the thought of not being here for them. He used to be so strong and powerful, his cricketing friends called him ‘Gigantor’ – a huge, benign talent. He was someone they enjoyed hanging out with. They’d call him when they wanted a fun night out.

       Today Alex talks about getting a dog. Not a sweet cuddly dog but a big intelligent Alsatian. A dog that could protect them all. A dog that would bite an intruder, if they came to the house, if they tried to attack his wife or kidnap his daughters. Without the dog, Alex fears he would have to sit and watch these atrocities, unable to help. He could call out but his voice, like his body, is weak. Indecipherable. He is haunted by his inability to be his family’s protector. As his body deteriorates, the fear and horror inside his mind grow deeper.

       They grow inside mine too. He is my only son.



Evie Emjay’s professional career has involved work in the creative arts, including the theatre, teaching, and working as a freelance artist. She lives in Wiltshire.

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