Manni and Reuben Coe write book together
Manni Coe, 49, describes his younger brother Reuben, who has Down’s Syndrome, as “a heart on legs”. He says: “There is no malice in him; he is all soft edges.” When I ask Reuben, 39, to describe Manni, he is equally loving. “He’s my brother,” he tells me in a warm whisper. “I love him. He makes me a little bit strong.”
It’s a sentiment that encapsulates the brothers’ unique bond. Their story is one of profound love and sacrifice at a time when it was difficult due to the strictures of Covid to offer either to someone adrift in the care system.
It also poses important universal questions about how we care for those we love.
In 2020, Reuben was living in a care home in Dorset. Depressed, and fogged by prescription drugs, he hadn’t spoken for a year, and had enjoyed no meaningful social contact over a four-month period after his overstretched carers encouraged him to isolate in his room during the first Covid lockdown.
His only company was DVDs of Mary Poppins and Chitty Chitty Bang Bang, and the only way he could express himself was by writing poems or drawing felt-tip scenes from his favourite stories and West End musicals.
Cut off from everyone and everything he loved, Reuben began to withdraw into himself until the day he sent Manni an anguished text message. It read, simply: “brother. do. you. love. me.”
Manni was 2,000 miles away in Andalucia, Spain, where he runs a bespoke travel company, when he received the text message that challenged him to act upon the depth of his love.
“I’ve lived in Spain for 23 years, and Reuben had stayed with me for years at a time. But he’d deteriorated while living in the UK and had been placed in a care home.
The Coe brothers in Santiago de Compostela, Spain, in 2003
“When I’d visited him there that summer, I’d been desperately concerned about him,” he explains.
“He was a broken man, shut down; he didn’t want to communicate and couldn’t look me in the eye. We weren’t allowed to touch and we had to wear masks.
“I felt as if I was visiting him 40 years in the future and seeing him as an old man in a retirement home. He needed to hang on to me to walk, but we weren’t allowed to touch.
“It was very sad to see him so desperately lost. It was as if all the loneliness was the widening of a river between us – I could see him, but I didn’t know how to get to him.”
The message may have been just five words long but coming from Reuben it was what Manni describes as “a huge emotional expression”.
“It was as if he had reached across the river to me with this SOS. He may have been crumbling, but it showed that he knew what he was doing.”
After discussing the situation with his partner, Jack, 59, who runs a media agency in London, Manni decided that the only solution was to travel to England and “bro-nap” his brother from the care home.
“Jack suggested that I self-isolate for 10 days and then travel to the UK through the safe corridor of Gibraltar, before breaking Reuben out of the care home,” he explains.
A family conference conducted by Zoom, with parents, Tim and Jenny, and their two other brothers – one in the US and one in the north of England – revealed the entire family was in accord.
While the rest of his family sheltered from Covid, with his father on the extremely vulnerable list, Manni bought a one-way ticket to the UK.
“Jack told me to use his cottage [on the Jurassic Coast] as a base. He said, ‘You know this is not going to be a quick fix?’ and he was right: Reubs and I were there for 26 weeks.”
The story of the siblings’ six-month project to put Reuben back together again is now the subject of a lyrical and moving book, brother. do. you. love me. – written by Manni, with illustrations by Reuben – which has just been shortlisted for the highly prestigious British Book Awards 2023.
It details their electrifying odyssey together, as Manni deploys what he calls “tough, energetic, imaginative love” to heal his brother and help him to reconnect to the world. It’s no exaggeration to say that Manni may have saved Reuben’s life by rescuing him from care.
There was a terrible death toll among the vulnerable and elderly in care homes during the pandemic, with more people dying in residential accommodation than hospitals; afflicted not only by disease but by profound isolation at a time when they needed loved ones more than ever.
“Reubs didn’t need looking after; he needed someone to ‘do with’, not ‘do for’. But it wasn’t an easy ride. I don’t wrap up what happened in cotton wool; there were times when it was really tough,” says Manni.
Reuben and Manni with their parents, Jenny and Tim, and siblings Matthew and Nathan
Back together in the UK for the awards on May 15, in which they have been nominated in the non-fiction narrative category, the brothers, who were born in Leeds, are photographed by the Daily Express and I wonder what it felt like for Reuben when Manni arrived to take him from the care home.
“You rescued me,” Reuben whispers, looking at his brother and lightly kissing his hand. Their life-affirming memoir is based on a journal Manni started writing in February 2021, half-way through his healing time with Reuben. They have just recorded the audiobook together.
“I would sit and write at night in the dark, and it gave me the impetus to keep going,” Manni explains.
“That was when I realised the power of what we were living through. I knew I wasn’t writing a fairy-tale. There were tiny chinks of moments when I thought we were getting somewhere – when he would give me the most amazing drawings – but it was a belief system, rather than circumstantial evidence.”
The next morning, as Reuben seemed unwilling or unable to engage, it was as if they were back at the start again. “It was like rolling a boulder up the hill.
“I would go to bed believing we had moved the baseline; that the front line of our battle had progressed, only to have my hopes dashed. I did feel it was a battle for brotherhood.”
A psychiatrist, sent by the care home to assess whether Reuben could live with Manni in the cottage – after he had taken him for a long weekend and not returned him – gave Reuben only a 10 per cent chance of recovering from the terrible toll isolation had taken on him.
Manni and Reuben Coe share an unbreakable bond
“That was when the fight kicked in,” says Manni, a warm and hugely persuasive man who is fearless in his loving and who describes his younger brother as his “right arm” – a limb that he declares that he was not prepared to “cut off”.
When Reuben was in the care home, Manni – whose loving zeal is reminiscent of parenthood – decorated his brother’s room with a “huge wallpaper mural of a lion” bought online. And his empathy for Reuben’s outlook is striking.
“He has always lived in the space between reality and fantasy,” explains Manni of Reuben’s vivid imagination. “I don’t have children, through circumstance, although I would love to have been a father.
“There is some grief for me, attached to that, and although I’m Reuben’s big brother, he is the closest thing to a son I’ll ever have: I knew I had to nurture him.”
As with a young child, Manni realised that entering his realm of make-believe was the most effective way to engage with Reuben.
“He loves the story of The Lion, The Witch and The Wardrobe, and the world of the Hobbits. But for Reuben it is all real.
“He’s always lived in that space between reality and fantasy, but after being able to do nothing in lockdown other than watch DVDs of films, it was almost as if he had crossed over permanently into that world.”
Rather than trying to lure him out, Manni decided to join him there – choosing language that would resonate with his sibling.
“Because he thinks he actually is a Hobbit, for example, I know the most efficient code of language to use with him is engaging with using his own mode of communication.”
So, rather than say, “Put your arm around me and let’s go for a walk”, Manni will say to Reuben, “Put your hand on my mane and let’s walk a while together”.
These are words that Aslan [the noble lion in CS Lewis’s 1950 classic], uses with one of the children who venture out of the back of the wardrobe into the magical land of Narnia.
Creating a structure for their often challenging days together was vital. Their neatly annotated daily diaries form the endpapers of the book, revealing the minutiae of a repeating grid of meals and activities.
“There was no shape to our time initially, because we didn’t know how long we would be there together, but I was very aware that Reub’s recovery would be based on structure, and I wanted him to be proactive in his own recovery.
“The act of ticking off an activity when it is done gives a sense of pride,” says Manni.
On Fridays, they would put on musicals and stage them live on Instagram. One day, Manni decided to pretend it was Christmas, complete with a tree and decorations.
They used dance and music on a daily basis, as well as focusing on “the five pillars of good food, sleep, exercise and fresh air, responsibility, and love”.
After 26 weeks, Reuben was no longer entirely non-verbal and communicating only in drawings, and Manni sensed he was ready to start living independently again in a newly built independent-living facility in Dorset.
Brother. do. you. love. me. book cover
Jack had wanted to bring Reuben back to Spain permanently, but it was Reuben who chose to be somewhere he could create his own community – a testimony to how far he has come with Manni’s support.
After a 10-day period of transition, Manni returned to his life in Spain. His business in Spain had nearly folded, rescued only by a colleague who offered to hold the fort.
He describes driving away from Reuben as one of the hardest things he has ever had to do. “I felt completely lost for days,” he tells me. Now, when not together, the brothers talk every day on Whatsapp and share a video call once a week.
“Whereas before he used to give me a drawing before he went to bed, now he sends me a text message: ‘sleep well brother. love. you.’
“And when we talk on WhatsApp he’ll say, ‘I am home with my people’. Notably, they are his people, not my people. He’s made new friendships for himself. Time together gave him an opportunity to flourish.
“He sent me a text message asking if I loved him when he was at his very lowest. The book is my love story to let him know just how much I do.”
- Brother. do. you. love. me. by Manni Coe & Reuben Coe (Little Toller Books, £22) is out now and available from the Express Bookshop. To order for a discounted £19.80, visit expressbookshop.com or call Express Bookshop on 020 3176 3832