BROTHER. DO IT. YOU. LOVE. I.
by Manni and Reuben Coe (Little Toller £22, 304pp)
‘Brother. do. you. love. I.’ That was the heartbreaking text Reuben Coe, 38, sent to his older brother Manny during the second lockdown in November 2020.
Ruben has Down syndrome. So he was trapped in a care home that his vulnerable elderly parents could not visit. Manny lived abroad – the rules did not allow him to leave the country. But in the months since the pandemic broke out, the Coe family watched in helpless agony as Reuben sank into depression. When he had the energy to accept their video calls, they noticed that the lack of human contact had left his gestures “weakened, more devoid of any emotion.”
Parcels were sent to him, which the clerks passed very slowly from the quarantined pile on the porch. One puzzle spent two weeks in that pile. Eventually, the erstwhile Reuben stopped talking and shrunk to 55kg (about 8st 9lb).
“Thank God, one of the caregivers noticed that he was hiding his food,” Manny says. “It was a hunger strike, a way of telling us something was wrong.”
Ruben (right) has Down syndrome. So he was trapped in a care home that his vulnerable elderly parents could not visit. Manny (left) was living abroad — the rules didn’t allow him to leave the country
So as soon as the rules allowed, Manny, a 48-year-old traveler living on a farm in Andalusia, Spain, flew back to the UK and kicked his brother out of the house. He lied to the staff saying he was just taking Reuben for a short break. But the couple spent 26 weeks in a Jurassic Coast villa while Manny tried to bring Ruben back to life.
In his tender memoir of that period, Manny describes the adrenaline rush of that first day. The raindrops on the nurse’s plastic PPE. The screeching of their tires as they hit the two-lane road. The moment Ruben’s hand rested on his as he shifted gears, “like a spaceship landing on the moon. We have contact’.
As soon as Reuben’s Darth Vader suitcase was unpacked, Manny was finally able to give his neglected brother a bath.
“I take the loofah and run it over his skin,” he wrote. “I wash his hair and he closes his eyes. He hadn’t felt anything like this in months. All there were were gestures guiding him in and out of rooms, hands handing him pills, hands preparing meals and closing doors.
As Ruben sleeps, Manny flashes back to their childhood. Ruben was born – the youngest of four brothers – in 1983. The day after his birth, a doctor knelt at his mother’s bedside to tell her there was a 90 percent chance her son had Down syndrome.
“You can’t breastfeed these babies,” she was told.
“Oh, give it here,” she replied. “This one will be fine.” She lifted him to her breast where he began to nurse, continuing to nurse for the next 14 months.
But although Reuben was embraced at home, Mrs Coe felt the constant condemnation on the streets.
He could see people craning their necks to peer into his cart, thinking: is it him or isn’t he?
A woman approached her on the school playground to get a better look at her. “Oh dear, love. Didn’t you get the test?’ She ran halfway home and stopped howling in an alley.
More often than not, people said, ‘I’m so sorry,'” Manny recalled. “Incredibly,” he says, “I can still hear it today. . . What is there to regret?
“This misplaced pity is throwing me off balance. Reubs is a gift and he enjoys his life maybe more than you and me. In fact, it helps us enjoy our lives more.
But as Reuben grew up, the Coes were given grim lists of things he would “never do.” He was prescribed shoes to help him walk “more normally”; creams to give him “more normal” skin.
As Reuben was growing up, the Coes were given grim lists of things he would “never do.” He was prescribed shoes to help him walk “more normally”; creams to give him “more normal” skin
Manny believes the conversation should have been reframed to focus on Ruben’s abilities. “Why are we always encouraging him to be more normal instead of being more himself?”
Reuben first went into a nursing home when his parents retired. Things went well at first, but care is only as good as those who provide it. A carer bought a plasma TV worth £800 using Ruben’s bank card.
Without a warm commitment, Reuben began drinking and developed a hoarding disorder. Care home rules meant staff were not allowed into his bedroom unless invited, so no one saw the growing mess and dirty bed linen.
Manny confronted them, but sighs that “they defended themselves vigorously, reciting the conditions and policies to carers as they sat with coffee and pastries at the picnic table in the garden”.
Manny took Ruben to live with him and his partner Jack in Andalusia, but Ruben struggled with the storms and could not learn Spanish. So he returned to care in the UK. Then the pandemic hit.
Manny’s account of Reuben’s rehabilitation in their closed villa is not a dream. He admits loneliness and frustration. Sometimes he screams. Yet on daily walks with Reuben, he is reminded that: “As a gay man without children, I’m not often seen as someone who cares or takes care of others.
“But the world seems to look at me differently when I’m with him. And maybe I look at the world differently. Walking at his pace, my vision changes.
Reuben communicates first through drawing, and his emotional felt-tip pen pictures are lovingly interspersed throughout this book.
He admits his sorrows, writing: “I’m a bit lonely”, “I always need help”. Although Manny has always seen the joy in his brother’s difference, he is forced to face the fact that Reuben is not so happy to be “special”. When he asks what could be changed to make things better, Ruben replies, “My face.”
Manny admits that he doesn’t like to imagine Ruben’s future. Life expectancy is about 50 years for people with Down syndrome. This is a hard fact to confront
Manny also admits that he doesn’t like to imagine Ruben’s future. Life expectancy is about 50 years for people with Down syndrome. This is a hard fact to confront.
Yet, during the months at the cottage, Reuben relearns a great deal of independence. He takes care of the bins, puts out the laundry, empties the dishwasher, helps make dinner, goes to the post office and even waters the neighbors’ plants.
Manny had to sell his car to finance his time off from work. Before he had to return to his life in Spain, he found a new and hopefully better home to care for Ruben.
As Manny prepares to say goodbye, Ruben recognizes his anxiety and assures him, “We’ll be fine.”
You close the book hoping this is true. And they feel deeply moved by the depth of their brotherly love.