Brother, do you like me? The cry for assist that sparked a care-home rescue mission | Down’s syndrome

They have been simply 5 phrases, separated by 4 tiny full stops and 4 areas: “brother. do. you. love. me.” However when, in November 2020, that textual content from Reuben Coe, who was alone in his room in a care house in Dorset, arrived on the cellphone of his brother Manni in Andalusia there was little else he may do. Manni needed to get him out.

Quickly the 48-year-old journey information was packing his luggage, saying an indeterminate goodbye to his associate Jack and flying to Britain on a one-way ticket. He collected Reuben, 38, who has Down’s syndrome, from the house, the place he was given a ten% likelihood of recovering from the horrible toll isolation had taken on him, and took him to a cottage in a village close to the Jurassic Coast.

For the following 26 weeks he had one objective in thoughts – attempting to assist his brother, who on the time was non-verbal, locked in and depressed, get higher. However what materialised was a journey that’s nonetheless unfolding. The brothers have printed a ebook, that includes Manni’s writing and Reuben’s drawings, they’re going on tour across the UK, and Reuben – who Manni believes is now at round 75% of his former self and getting higher every day – has a brand new house.

Sitting in an emerald inexperienced chair in the course of a theatre in south-west London, Reuben is fast to speak. Displaying me a newspaper image of the Queen mendacity in state, he softly says: “I miss her.”

Manni, left, and Reuben Coe.
Manni, left, and Reuben Coe. {Photograph}: Andy Corridor/The Observer

On the ground subsequent to him is a blue tote bag, to which he later rigorously returns the newspaper, and on his individual always is a slender paintbrush, which he generally makes use of to stroke his pores and skin or the chair. He usually seems up on the dramatically lit stage, wearing forest surroundings, which immediately reminds him of Jack and the Beanstalk. Earlier than I arrived, they have been dancing across the auditorium to Magnificence and the Beast, says Manni. Later within the night, Reuben, who loves theatre, movies and musicals, will seem on the stage of the Normansfield Theatre on the Langdon Down Centre in Teddington in entrance of a room full of individuals to very large applause.

The ebook, printed this month by Little Toller Books, tells the story of their journey collectively throughout Covid and the way they wrote and drew their manner by way of one in every of their largest ever challenges. Their footage and phrases talk with each other but in addition categorical the voices of two interweaving particular person lives. It additionally describes their lives rising up within the Yorkshire Dales, then Berkshire, with their mother and father in a household of 4 brothers – a life that “orbited the church”, writes Manni. At one level they lived within the care house that their father ran.

Initially, there was no plan to share their writings and drawings publicly, says Manni. Reuben’s boldly colored felt-tipped drawings – which embrace Joseph’s technicoloured dreamcoat, many lions and the lamppost from The Lion, the Witch and the Wardrobe – have been a method of expression and communication at a time when phrases weren’t accessible.

Each evening he would do a drawing for me, give me a kiss, whisper ‘evening brother’, after which hand it to me the other way up, so there was a giant reveal,” says Manni. “And that’s how we communicated – he communicated with me by way of drawing.”

And for Manni, who has at all times written, it was a type of remedy. “Writing about it gave me hope as a result of I realised that there was a story and I needed it to be a cheerful ending,” he says, his voice cracking with emotion. “So if I used to be writing it, it was giving me inspiration that we may push this by way of to a cheerful ending.”

Their six-week tour, which is able to take them round bookshops and festivals round England and Wales, will culminate at Hay competition with Sally Phillips interviewing them, after Manni approached the actor in an opportunity encounter at a restaurant. The very first thing Reuben plans to say to her is her Miranda catchphrase “bear with”.

How does it really feel to be sharing such an intensely private journey? “We’re nonetheless getting used to it, as a result of we’ve lived a really quiet final yr,” says Manni. “It does really feel as if we’re taking it outdoors. So it was a really personal factor and now it turns into very public.”

Reuben is evident about why they’re doing it. “Assist folks,” he says.

Manni provides: “We expect we are able to. We expect that what we’ve lived by way of will assist different folks.” They’ve already had individuals who have learn the ebook get in contact. “It’s a narrative that so many join with,” says Manni. “Not simply individuals who have somebody within the household with Down’s syndrome or a sibling, however anyone who was remoted in lockdown – and we have been many. Covid hasn’t gone away. Some persons are nonetheless residing it.”

Earlier than September 2018, when Reuben lived together with his brother and his associate in Spain , he was “chatty Cathy”, says Manni. “At all times the life and soul of the social gathering.” He didn’t use many full sentences however he was a talented communicator.

He clinically regressed, then improved, earlier than regressing massively when he was admitted to a care house in February 2020. Household Zooms made all people really feel additional away, not nearer. An image taken throughout lockdown of Reuben exhibits him gazing from his bed room window, one hand in opposition to the glass.

One of Reuben Coe’s drawings from his book
Considered one of Reuben Coe’s drawings, based mostly on The Lion, the Witch and the Wardrobe, which characteristic in his new ebook. {Photograph}: Manni Coe

Manni spent practically two months visiting him day by day over the summer season however returned to Spain with “big doubts”. It was solely a November selfie, of Reuben roaring like a lion, that gave him any hope. “It was a defining second. That’s after I noticed that he was able to combat and that he’d discovered braveness.” Quickly after that got here the textual content – brother. do. you. love. me. – which might encourage the title of their ebook.

The textual content was not a query, says Manni, it was a immediate. “That was Reuben’s manner of claiming ‘come and get me out of right here. In case you love me then present me the color of your love’. Is that what you meant Reubs?” Reuben raises his finger in settlement. The color of their love might be a purple rainbow, he says.

However when Manni went to gather him from the care house, Reuben was not in a great way. “After I bought him out of the house he was completely nonverbal. And that’s how the drawing occurred. He was speaking by drawing.”

They began going for walks, regularly growing the gap, and Reuben noticed a therapist, who joined their Covid bubble. “She got here to the home as soon as per week and began serving to Reuben on the bodily restoration as effectively, as a result of he had muscle wastage and was actually weak as he hadn’t gone anyplace for months,” says Manni. “And he or she began engaged on his expression.”

On Fridays they’d placed on musicals and stage them reside on Instagram. And someday Manni determined to faux it was Christmas, full with a tree and decorations. The therapist got here with music from his favorite movies – Lord of the Rings, Mary Poppins, Chitty Chitty Bang Bang – and began doing dances together with her fingers which Reuben would shadow.One other central ingredient of life that Reuben had been lacking was contact. “Nobody actually touched him for months, and that’s the place the paintbrush got here from, for sensation. It’s fairly heartbreaking,” says Manni.

Describing their first hug once they have been reunited, Manni says it was “simply wonderful”. He says that Reuben informed him afterwards: “I wanted that” – to which Reuben raises his finger to point out me he’s in settlement.

This isn’t the primary time Manni has needed to take Reuben out of care. The primary was a couple of years in the past when he was despatched for a go to to Spain wearing his pyjamas. “We referred to as it Soiled Sheets,” he says. “And Reubs was overweight, massively obese. You weren’t in a superb place, have been you Reubs?”

Their experiences have proven Manni that care properties are solely nearly as good because the folks working in them. “The 2 adverse experiences we had, it was all right down to staffing issues, lack of employees, not sufficient folks for too many tenants,” he says. Of the primary house he needed to take Reuben out of, he provides: “They have been taking care of him however they weren’t caring for him. There’s a giant distinction, I feel.”

Reuben Coe’s drawing from brother.do.you.love.me.
Reuben Coe’s Aslan drawing from brother.do.you.love.me {Photograph}: Reuben Coe

Caring, he believes, must be a well-paid profession. “It’s a particular present, and so many people who find themselves gifted carers have to maneuver on just because they will’t make it work financially.”

When Reuben was prepared for a extra unbiased life, Manni and Jack strongly thought of inviting him to reside with them once more, however felt the most suitable choice was for him to be someplace he may create his personal group.

They discovered him a spot at a newly constructed house in Dorset, the place there are not any communal areas or corridors however particular person personal areas that residents can invite one another into. Reuben has his personal tenancy settlement, and is inspired to be as unbiased as potential. After a interval of transition, Manni returned to his life in Spain.

Saying goodbye after their time within the cottage collectively was desperately painful. However now Reuben says he feels at house there. In a listing of “good issues” he compiled earlier than shifting in, he wrote: “Am house now.” Manni is engaged on his subsequent ebook, a prequel to this one, about once they purchased the house in Spain.

Manni and Reuben usually re-enact a scene from The Color Purple, one in every of their favorite movies, the place two sisters who’ve been separated are reunited in a subject of purple flowers. Having come collectively once more to embark on their tour, Reuben gave Manni an image of a lavender subject. “It was the reunion of two siblings.”

brother. do. you. love. me. by Manni and Reuben Coe is printed by Little Toller (£22). To help the Guardian and Observer order your copy at guardianbookshop.com. Supply costs might apply

Leave a Comment