Adversity and heroism often go hand in hand. In a book to be published in October, Manni Coe tells a story of tragedy induced by lockdown and the heroism of two people who find a way through it. Manni spoke to Fergus Byrne about their journey.
Describing him as a ‘squidgy bundle that never cried’ Manni Coe remembers the first moment he held his little brother Reuben in his arms. His earliest memory is that Reuben ‘made me happy’. On hearing that his little brother had something called Down’s syndrome, Manni wondered if his family was ‘special’ and had somehow been ‘chosen’ to have this gift bestowed upon them. His sense of responsibility and growing love for his little brother were born out of those early days of wonder and enlightenment, and the bond has never diminished.
This year, with Reuben about to turn 39, Manni has written a book about their journey from the dark days of pandemic lockdowns, to the ray of hope that now sees Reuben living a more independent life in a flat of his own. Subtly filling in the back story of how Reuben ended up in a care home for adults with learning disabilities, brother.do.you.love.me., will be published by Little Toller Books in October. It is a story that soars and plummets and wounds and heals in equal measure. Written with a warming depth of love, care, and profound insight, it also casts a keen eye over our care system, our understanding of people with learning difficulties, and the deeply personal questions that can haunt anyone with responsibility over others.
Growing up as the youngest of four brothers, Reuben was part of a merry troupe in a family filled with love and natural warmth. Manni explains that their parents’ lives ‘orbited the Church’. One day, after a comment at school Reuben asks his father “Why do I have Down’s syndrome?” His father explains how much the family love him and says: “You are a gift. And guess what? You will not have Down’s syndrome in heaven.” Manni has always been bewildered by the response. However, today he accepts that it is something that we all do. It was an ‘evasion’, a shaping of make-believe to avoid pain. For Reuben it may have helped nurture a fantasy and escape that in reality helped build a mythical world for him to live in. Like places in Reuben’s favourite stories, CS Lewis’s Narnia and JR Tolkein’s Middle Earth, make-believe is a place to go when the real world presents too much pressure, in the same way that characters from The Lion King embody what Reuben sees as safe and strong.
When it becomes obvious that Reuben’s care requires expert assistance, the family reluctantly follows the path of social service advice and allows him to be scooped into the adult care system. However, seeing Reuben unhappy in a west Berkshire care home Manni flies him to Spain to live with him in Andalusia. He realises that while in a care home Reuben has nothing to compare his life to, so can’t express how his life is.
Embracing characters from Lord of the Rings, Manni’s partner Jack becomes Samwise Gamgee and Reuben becomes Frodo Baggins, while Manni becomes Gandalf the Grey. Reuben is ‘happy-go-lucky’ and ‘daring’ and the three get on with life in their own comfortable care system. Reuben makes friends, goes for walks with the dogs, and begins to learn to make his own observations and decisions. But in the long term, the language and cultural differences are too much to cope with and Reuben moves back to stay in a care home in Dorset. Here he also appears to be happy, until suddenly the world is thrust into the jaws of a pandemic that turns everyone’s life upside down.
Coming to terms with the medium and long-term effects of lockdowns and the fear that comes with a worldwide pandemic has been hard for everyone, but for someone with learning difficulties, separated from a close and loving family, the only place for Reuben to go is inside his head. The pandemic stopped all visits and the only communication Reuben had was through letters and waving at people from the window of his room. He soon becomes non-verbal and only communicates through drawings using felt-tip pens. By the time Manni is allowed to see him again—socially distanced at the back door of the home—Reuben will hardly make eye contact. He has been trapped in what Manni describes as ‘an ever diminishing lonely world’.
As soon as lockdowns and restrictions are lifted, Manni flies back to England, puts his life and business on hold, and takes his brother out of the care home to live with him in a cottage in Dorset. Thus the heart-wrenching story of Manni and Reuben’s journey to search for a shared recovery during the winter of 2020/21 slowly unfolds. To begin with, it is trapped inside a bubble of fear, anxiety, and no shortage of guilt, but given time, patience, and undying brotherly love, there is hope. ‘He’s such a character’ says Manni, ‘a massive personality, and it was all gone. It was just underground. I grappled and had to be very inventive in ways to try and get him to remember. It was all about engaging his memory through photographs and video and conversation.’
It was a mountain to climb, but through Manni’s perseverance, Reuben’s gentle and often concealed understanding, along with a community of caring friends and neighbours they scale the cliff-face together. Manni describes feeling that he only has half of his brother. He wants the other half back but that entails helping Reuben withdraw from a prescription for anti-depressants, as well as recover from nine months of being looked after ‘but not being cared for’. ‘I think there’s a big difference’ Manni says. He relates the story of how Reuben sent him a text wishing he could watch the Strictly Come Dancing final. He had a television but nobody had bothered to see if it was working. ‘It’s that gap between what he can express and what he needs that is the bridge of care that we’re looking for’ says Manni. Explaining the need to see beyond simply looking after someone he says: ‘It’s a real question of pre-empting his needs and having the imagination to introduce ideas to him—because then he can capture them as his own.’
Manni’s deeply personal narrative, along with Reuben’s drawings, liberally spread throughout the book, are about so much more than the battle to bring life back to someone traumatised by the ravages of a pandemic; a trauma that made it impossible for even the most devoted carers to do their jobs beyond simply coping. It’s a story about looking past the means available to care for someone. It’s about giving someone the opportunity, physically and psychologically, to make something of their own life rather than forcing them to fit into a routine that is determined by a financial structure.
‘It is a story of brotherhood’ says Manni. ‘It’s about caring for and loving somebody in a real and practical way. It isn’t a book that attempts to describe Down’s syndrome to people. It’s really just a story of two brothers who need each other. I need Reubs just as much as he needs me.’
Manni was originally going to dedicate the book to anybody who has lost a brother, but instead dedicated it to “anyone who has ever lost their way”. ‘Because we did lose our way’ he says. ‘Reubs lost his way. And we, his family, allowed that to happen.’ Manni carries a weight of guilt for allowing Reuben to get to that state. ‘He had lost his way but I feel partly responsible for that. So the book is about finding our way back onto the right path.’
brother.do.you.love.me., is, in many ways, a heroic story with many heroes. When Reuben was 19 he and Manni along with their brother Nathan walked the Camino pilgrim path to Santiago de Compostela. Along the way, Reuben left a drawing on another pilgrim’s bed. It was of a wardrobe, a door into Narnia. When the person who found it returned it to Manni he explained that for Reuben the door to Narnia represented hope. ‘My brother is finding the Camino tough’ he tells the other pilgrim. ‘So at the end of every day he draws a wardrobe as a sign of hope—one day soon he’ll find a Narnia.’