Manni Coe interview: ‘How I brought my brother back to life’
When Reuben, who has Down syndrome, sent a heartbreaking text, his brother, Manni, knew he had to act. Alex Spencer hears their remarkable story ahead of Cambridge Literary Festival.
A text of just five words was all it took to make travel consultant Manni Coe leave his home in Spain and set off to rescue his younger brother in the UK.
It was late 2020 and the pandemic was in full swing. Reuben, who has Down syndrome, was living in a care home for adults with learning disabilities in England. And because of Covid restrictions he had been isolated for three months.
Due to fears about the residents’ health, the home had kept him shut inside his room with no visitors, only able to wave at his parents through a window. He didn’t understand where his family had gone or why no one came to see him anymore.
Manni had been worried about this little brother for some time, visiting him after the first lockdown when he was able to come to the UK and take him for socially distanced walks. But after returning to his partner in Spain, Manni received a heartbreaking text.
“During the lockdown, we couldn’t get to him. I was stuck in Spain. My partner was stuck in Spain. My parents were local in Dorset, but they weren’t allowed to visit him. There was no communication,” says Manni.
“I think Reuben was just massively confused, he didn’t really know what was happening. And I remember some of the text messages he sent - ‘Where are you?’ ‘Where’s my family?’. It was very painful for us to see him deteriorate like that. So when restrictions were briefly lifted and I got the message - ‘Brother. Do. You. Love. Me?’ - I realised that Reuben was on his last last straw. He didn’t know how much longer he could hang on because it wasn’t a question. He meant: ‘You need to come get me out of here. And now!’ I read between the words because it was coded communication and that’s the way Ruben has always communicated.
“He had moved into the home just five weeks before the pandemic hit.
“If it hadn’t been for Covid, maybe that place would have worked for him because there was a community around him and he had his clubs and activities to go to. But then the pandemic hit and he was basically locked in his room. People with Down syndrome were told they were extremely vulnerable. His home took a very hard line - which I think most care homes did - and to protect the residents they isolated them.”
The decision to get him out of there was made in minutes. Reuben had lived with his partner Jack and Manni in Spain for seven years before a breakdown in 2018 saw him needing one to one daily care. Jack and Manni adored him.
Manni says: “I asked Jack, ‘What am I going to do?’ And he was the one that said you’re going to self isolate and you’re going to go back to England, get him out of the home and take him to my cottage in Dorset. So I rescued him. We call it the ‘bro nap’. And he and I went to live in the cottage. We didn’t know how long we were going to be there, no one knew. It ended up being 26 weeks.”
Manni’s travel business had been forced to close because of the pandemic so he was the only person available who could dedicate himself to Reuben. But when he arrived to collect him, things were much worse than he had anticipated. His little brother was non-verbal and closed off “like a clam snapped shut”. The complete social isolation meant he had not been hugged by anyone for months and believed he had been abandoned by his family. Reuben now carried a paintbrush everywhere to stroke his own arm so he could feel the sensation of being touched. He was barely eating and wouldn’t look Manni in the eye.
“It was a very clinical exchange. I had to sign for him and his medication and the carer that handed him over to me in the car park was dressed in PPE. It felt very sterile. I’d told them I was taking him away for the weekend but I knew we weren’t coming back,” he said.
“As I was driving, Reuben just reached over and touched my hand while I was changing gears. It was just a tiny, tiny gesture. But I knew that he was safe now. It felt like we’d jumped from a burning plane. We landed at the cottage and then I thought, ‘What the hell do we do now?’”
It turned out that Reuben was a shell of his former self. Where he had previously been full of fun, someone who loved to laugh, sing and dance and re-enact his favourite films, he was now silent.
“He didn't want to get out of bed. He didn’t want to eyeball me. He just wanted to be in his room. Didn’t want to come downstairs, didn’t want to walk, didn’t want to eat,” says Manni.
“I would prepare him lovely meals and he’d only have half of them. He would only drink half a glass of milk. Everything became halves. It’s almost as if he was feeling half of himself. We were living in this sort of diminished world. If you’re in a house with someone who’s not talking, there’s a really ominous silence. I remember those first weeks as just being really, really quiet. I sort of dug my heels in and gave him tough love. I would make him get out of bed and I would bathe him and shower him and I got him into a routine. I cut all his nails because it sounds disgusting, but they hadn’t been cut for weeks.”
It turned out that Reuben, who was usually so laid back, was feeling angry.
“I saw a flash of anger in his eyes and I think that he’d lost trust in me,” says Manni.
“I’m his big brother and I’ve always had his back but I’d not been able to have his back at that point because I wasn’t there. And so I had to build that bridge again.”
Manni set about trying to rebuild his brother with “good food, fresh air, daily walks and love”.
He collected Reuben in November 2020 and in February 2021, Manni decided to keep a record of their time together. He began to write and write, detailing the gradual return to health he was witnessing in his brother. Meanwhile, Reuben had begun to communicate. He was still barely speaking but instead he was pouring his feelings into his artwork. Every day he would draw a new picture with his felt tips.
Manni says: “His way of communicating with me was through his felt tip pen. He took to drawing every single day and before he went to bed each night he would give me a drawing upside down so that there was a bit of a reveal.”
Reuben took inspiration from his favourite films - Sister Act, the Lion King, the Narnia films, Lord of the Rings and Joseph and his Technicolour Dreamcoat.
“I wasn’t allowed to look at it until he’d gone to bed. And every night it was a picture of Whoopi Goldberg or a lion or a wardrobe or another of his characters from the films and underneath he would say, ‘Sleep well brother. Love you’. I kept them all. I thought they were lovely. But I remember a few weeks in I got them all out and thought ‘hang on!’ I put them up down on the floor in the kitchen and looked at them together. I realised there was a narrative about how Reuben was feeling, almost as if Reuben was explaining the story through pictures. Meanwhile, I was telling our story with words.”
Later the idea would come to him that they should publish a book about this time together. It is called: Brother. Do. You. Love. Me, and the pair are coming to the Cambridge Literary Festival to discuss it.
But this was only half of Reuben’s recovery. The stroke of genius was when Manni decided to get his brother to act out a scene from his favourite films once a week for family and friends to watch online.
“Reuben has always done shows. He loves musicals, loves Whoopi Goldberg, and has always been a show man,” says Manni.
“He had some of his fancy dress outfits with him. And so I said Rubes, ‘Why don’t we do a show for everybody on Friday night?’ He didn't like the idea at first but when I put the music on something in him sort of twigged. His memory started coming back.”
They rehearsed all week and on Friday broadcast the show on Instagram Live to around 30 family and friends.
“I told him everyone was watching, and he said ‘Where are they?’. So we pretended they were sitting on the sofa and he got it. All of a sudden our kitchen became a stage and the music kicked in and Reuben did his show. He remembered all the moves and it was brilliant. It was five minutes of complete bliss. I thought: ‘He's back - he’s back in the room!’ But as soon as it was over he took off his nun’s outfit and slumped back on the sofa as if nothing had happened.”
Manni decided to persist with the shows. They did a Friday night musical every week and for the rest of the week they made scenery, props, tickets and programmes.
“It gave us something to look forward to and gave us a shape to our week,” he says.
The songs gathered more and more meaning for the brothers.
“There’s a big line from The Lion King when Mufasa dies and comes back to Simba, his son and appears to him in the stars. He says, ‘Remember who you are’. We clung on to that,” says Manni.
“The stories that Reuben loved helped him regain his sense of identity. It’s really quite magical how that happened.”
As time went on, Manni felt that he was living more and more in Reuben’s magical world. He decided to try to understand how his brother experienced life and it turned out to be eye-opening.
“In the book we have created together, I think Reuben is opening up his interior world to people. A lot of people have never had contact with someone who has Down syndrome, not personally. Maybe peripherally, but they haven’t had a relationship or a friendship with people like Reuben. So there’s a big question around who they are and what they need.
“This book explains who he is. And it’s explaining the magic that surrounds people with Down syndrome. It’s not just me who feels that. We have lots of friends and and contacts, especially since the book came out, that have family members with Down syndrome: sisters, uncles, aunts, sons, daughters and they all are aware of this magic that arrived in the family the day they were born. The world often tells us that having a disability is a negative thing. And what I hope this book does is explain that it’s a challenging thing. It’s a different thing, but it’s not necessarily a negative thing.
“People who take the time to leap into his world, they get so much out of it. We have a great friend, Tommy Boy, who’s one of Reuben’s idols, and he’s a very busy guy who works as a radio DJ and has three kids himself, and somehow he finds the time once every six months to go and see Reuben and spend a couple of days with him.
“I remember saying to him ‘Thank you for the time you spent with Reuben - you know it means so much to us’. And he said ‘Don’t get me wrong. I’m not doing it for him. I’m doing it for me!’ And that was really telling. We assume that we can give someone like Reuben much more than they can give us. But actually, the condition of Down syndrome is an extra chromosome on the 21st pair. So he has something that we don’t have. And when we take time to understand the differences that that one, one tiny little chromosome makes and then we enter a world that has been previously unknown to us.”
Reuben now lives in his own supported flat in Dorset and is enjoying life once more. He and his brother have been visiting literary festivals and book shops promoting their book, which was snapped up by a publisher the moment they saw Reuben’s artwork.
- Manni and Reuen Coe will be speaking at the Cambridge Literary Festival on Sunday, April 23. To book, visit cambridgeliteraryfestival.com/events/manni-reuben-coe-brother-do-you-love-me/.
