Article
Change
Community
Development
7 min read

To a house on the hill

Why did a New York lawyer move to a Brazilian slum? Jane Cacouris talks to Luke Simone about his extraordinary story.

Jane Cacouris is a writer and consultant working in international development on environment, poverty and livelihood issues.

an aerial view of a shantytown on a steep hill side in Rio, Sugerloaf Mountain is visible in the distance
Morro da Providencia, Rio de Janeiro.

It was a hot and humid evening in 2015 and Luke had just moved into a tiny house in Morro da Providencia, Rio de Janeiro’s oldest favela, a shantytown located in the heart of the city. His new home was near the top of the hill, sandwiched between two loud and rampant drug dens. He could hear the parties and orgies happening above and below him twenty-four hours a day; his neighbours regularly firing bullets out of the windows. The noise was draining and constant. It was dark outside, and Luke sat frozen in fear, staring at a blank laptop screen by his window facing the street… waiting and praying. He had just been informed that the bandidos (drug traffickers from the main drug gang in the favela) were on their way to pay him a visit. Gossip on the street had spread that he was an undercover police officer. Why else would a white British gringo in his thirties choose to buy a house in one of Rio’s poorest and most dangerous communities?  

“After about five minutes I saw a glint out of the corner of my eye… I looked around and a number of drug dealers were arriving on the porch.” 

Faced with ten heavily armed gang members, they asked who he was and what he was doing in their community. Luke took a breath and explained that God had called him to Brazil from New York, and that he was choosing to live in Providencia because he loved the neighbourhood, and wanted to serve the community and build something for them; for their children and their young people. The gang listened. Then remarkably they lowered their guns, said “ok then”, and walked away. Luke was stunned.  

“I know what happens to people… It was a very violent time. I thought I was going to die and it was terrifying. But God turned it around...” 

The relief that he was alive quickly turned into disappointment; a realisation that despite all the sacrifices he had made to be there, he wasn’t wanted by the people he had given up everything to serve. 

Armed police patrol the favela.

Armed police stand on steep steps between shantytown dwellings

Five years previously Luke was living in New York working as a finance lawyer with a corporate law firm. He was single, his firm paid for his Manhattan apartment, and he had so much disposable income that he saved half his pay each month. Originally from the UK, he grew up going to a local church in Surrey with his family, but he’d fallen far away from God.  

“I was in a favourable position to go off the rails. And I did go off the rails.” he says. 

In 2009, the financial crash hit and having spent five years living and working in New York, Luke began to question the premise and direction of his life. Through a family member, he was put in touch with a Christian association working with street children in São Paulo in Brazil, providing living accommodation to homeless children, who were disenfranchised from their families and/or victims of abuse and neglect. The aim was to reintegrate the children where possible with their families. During a weekend visit to São Paulo, within fifteen minutes of being shown around one of the shelters, Luke had a deep conviction that this was where he was meant to be.  

 “It was not this Damascus Road moment,” he says.  “It was a familiar voice. Not someone who was needing to twist my arm or convince me. I felt I was in good hands. Even though change was going to mean going from a six-figure bonus to zero salary…. I was suddenly ready to risk everything knowing I was in these safe hands.” 

A few months later Luke moved from New York to Brazil and went on to live and work in one of the shelters for street children for several years. He talks about a particularly bleak time when one of the boys in the shelter took a dislike to him, the relationship becoming so acrimonious that Luke even began fearing for his life. Emotionally and mentally drained, feeling rejected by the children he was trying to care for, he went away for a couple of days to regroup and called his sister. He recalls, 

“She said to me, ‘Just come home Luke. Just come home.’” 

Her words made him realise that he had life choices the street kids simply didn’t have. He could choose to leave them and “go home” at any moment; home to people who loved and cared for him. The children he was working with were born without options or choices. So, Luke decided to stay, and by making that decision, hoped to model a love and commitment to those who perhaps had never experienced it. A love that doesn’t diminish or disappear, even when we turn our backs. 

Luke Simone.

A man sits on a concrete path with one leg splayed out in front.

What is intriguing about Luke’s story is not the desire to “re-purpose” his life. So many of us feel at times in our lives that we are drifting without purpose or meaning but when we look for more purpose, it tends to be either seeking fulfilment in our work - towards more wealth or influence or social legacy - or through our relationships. What is intriguing is that Luke chose to follow God’s purpose, rather than his own.  

Luke’s story is one of sacrificing comfort, wealth and status to simply do life alongside the people that society in general has given up on, and, at times, in return getting hostility and death threats from the very people he is walking with. The story is a little reminiscent of the gospel story of Jesus Christ. Although, of course, Luke will be the first to say that he’s certainly not Jesus - “unqualified”, “unprepared” and “broken” are words he uses to describe himself – but perhaps this self-awareness of his own flaws has given him the ability to rely entirely on God rather than himself, in a place where he simply has to. 

Missionaries, like Luke, are perceived by many to be the outworking of a colonial interpretation of the “Great Commission.” This refers to a number of passages in the gospel of Matthew where Jesus tells his apostles to “make disciples of all nations.” People assume this means going to far flung places and preaching about Jesus. But when I asked Luke about his work in Providencia, for him, mission is far more integral and encompassing than “straight evangelism.”  

As theologian Christopher Wright points out, Jesus was concerned with responding to the needs of people - both materially and spiritually - in the power of the Holy Spirit. The two go together and are integrated. The Book of Acts and letters of the apostle Paul in the Bible show a commitment of the followers of Jesus to preach the good news and bring others to faith, but also to live with compassion as a loving community seeking to address the social and material needs of those around them. In fact, Paul’s first of many missionary journeys was to provide famine relief to prevent starvation of the people in Judea.  

So where is Luke now thirteen years after he first left New York? He still lives in Providencia and together with his team of volunteers and a local church in Rio, he has built and runs a community house, Casa Cruzeiro (House of the Cross) and adjoining educational annex at the highest point of the favela.  

Casa Cruzeiro.

A group of buildings jostle together at the summit of a hill in a city.

On entering Casa Cruzeiro during my visit to Rio a few months ago, I was struck by the sense of peace. The community around the house is far from calm. It’s poverty at its crudest and, as Luke will say, at times depicting humanity at its darkest. Murder, rape, incest, drugs, extortion, prostitution, abuse, neglect… the list goes on. Life at the margins doesn’t get more marginalised than this. Casa Cruzeiro is a light in the darkness, a stillness in the chaos. It operates an open-door policy where anyone is welcome, drug traffickers included (as long as they behave), for a meal, to hang out, to talk, even to stay if someone needs a roof over their head. About 200 children, adolescents and adults pass through their doors each week, and some of the activities include an afterschool programme, adult literacy support, a communal vegetable garden, career counselling, guitar lessons, bible studies and prayer groups. Material and spiritual needs met seamlessly and uncomplicatedly together as part of a whole.  

A  Providencia family.

A mother sits with a toddler standing in front of her. The father appears from the side lying on his back reaching an arm out.
A family play in a Rio favela.

If you could rewind the clock by thirteen years, and make a different choice, would you? I ask Luke. He pauses, and says no, but is clear that it hasn’t always felt like an easy choice. He’s often pondered over the comfort and wealth that he left behind. But at the moment he has no plans to leave.  

And what has he learnt about God over these years in Brazil?   

When he relies on God he feels a deep sense of peace, and a conviction of God’s love in a way he hadn’t known before.  

“When God called me to Brazil, he was saying, ‘You need to know me again. I want to reintroduce myself to you. This is who I am. And this is how much I love you.”

Jesus said to His father, “Let thy Kingdom come, on Earth as it is in Heaven.” And as I walk around the safe, clean space of Casa Cruzeiro… chat with Iam over lunch, who became a Christian five years ago when reading a passage of scripture with Luke… hear about Monique, who with the team’s help, has been accepted onto a youth apprenticeship programme… look out from the roof top past the carefully nurtured community vegetable garden to the dark winding alleys and mish mash of favela shacks sprawling down the hill and into the city beyond….and watch Luke’s eyes lighten as he tells me about the young people that he and his team look after and walk through life with…  

I realise this is what Jesus meant.  

Article
Ageing
Care
Change
Death & life
6 min read

A Tolkien poem helps a nurse understand the ravages of dementia

'Not all who wander are lost.'

Helen is a registered nurse and freelance writer, writing for audiences ranging from the general public to practitioners and scientists.

An elderly woman wearing headphone looks up and to the side with a big smile.
Playlist for Life

Not all who wander are lost.

Often written on a care home wall, on an inspirational poster, these words are usually set against a forest background, or compass, for added effect. They have also been used as the title of a conference paper discussing so-called smart trackers for people with dementia, whilst, Not all who wander need be lost is the title of a concise guide to navigating the heartbreaking challenges when a loved one is diagnosed with Alzheimer’s disease or other dementia.

As a care home nurse for more than ten years, I have seen residents wander - not lost but “walking with purpose”, as it is sometimes known in the caring community. “Nobody gets up and walks without a reason,” says Suzanne Mumford, Care UK's Head of Nursing, Care and Dementia; perhaps they are easing pain, or boredom, or looking for something that they can’t describe. I remember residents exploring, enquiring into self-made mysteries solvable only by themselves, examining everything from door handles to another resident’s buttons, even escaping with surprising speed. Walking with them, often in silence, can bring a sense of relief, comfort and companionship.  

What I didn’t know was that this is a quotation from a poem by JRR Tolkien, published in The Fellowship of the Ring seventy years ago. The actual line is - “Not all those who wander are lost”. 

All that is gold does not glitter, 
Not all those who wander are lost; 
The old that is strong does not wither, 
Deep roots are not reached by the frost. 
 
From the ashes a fire shall be woken, 
A light from the shadows shall spring; 
Renewed shall be blade that was broken, 
The crownless again shall be king.” 

We first hear this poem in Chapter Ten of Book One, as Frodo reads it in the postscript of a letter from Gandalf. As I read it, the imagery of being lost, withered, frost-bitten, in darkness, burned and broken, speaks something, in poetic picture language, of the ravages of dementia, the harrowing losses, the valley of tears. It brings to mind residents unaware of familiar objects or surroundings, looking straight through loved ones without a flicker of recognition, losing also language, continence, mobility and the ability to swallow. 

The TV presenter Fiona Philips recalled an agonising decline in her mother as she succumbed to Alzheimer’s, describing how, in the final stages, her mother “spent whole chunks of time just sitting and staring ahead, only able to give out a series of sounds”. Fiona herself now lives with dementia. “'It’s devastated my family and it’s the biggest health and social care challenge we face as a country,” she says. 

I once interviewed retired doctor Jennifer Bute, who lives with dementia. She talked of time travel (perceiving herself as living in a time from her past); disorientation to place and person; frightening hallucinations when old memories are seemingly ‘unlocked’; and ‘emotional unzipping’ when agitation and anxiety increase, often in the late afternoon or evening in something poorly understood as a symptom, known as ‘sundowning’. 

Yet there is something more to this poem – each of the pains has a promise – not all who wander are lost; the old that is strong does not wither; and, most poignantly, deep roots are not touched by the frost. In dementia, it is true that deep roots are untouched, that an enduring aspect of a person’s identity never truly withers, though it may be mostly unseen. Something remains. Oliver Sacks the famous neurologist emphasised that, even in the late stages of Alzheimer’s, the person is still ‘alive inside’ (the inspiring documentary with this title is recommended). In stunning real-life stories, he has shown how music appears to ‘call back the self’, awakening moods, memories and thoughts that had seemingly been lost. He refers to music’s extraordinary ‘neural robustness’ and describes one man, unable to tie his tie or find his way to the stage, yet able to perform a perfect piano solo. In one life-affirming, must-watch, tear-jerking video, gospel music was shown to enliven, calm, focus and engage a man simply known as Henry.    

Watch Henry

Singing can “provide islands of arousal and awareness like nothing else can”, according to Alicia Clair, Professor of Music Therapy. I’ve seen singing bring the person into the present for a passing moment, illuminating a face that seemed far away. One otherwise-silent lady completed the chorus of ‘Daisy, Daisy’ before descending into dementia again. Others have laughed, clapped, danced, embraced and even shed a silent tear during music therapy sessions, when music elicits memory. Doll therapy meanwhile has sometimes restored and revealed a sense of nurture, purpose, care and pride, with residents feeding their new friend before accepting their own food, folding its clothes and taking care of it cradled in their arms. Though it divides opinion, a doll can preserve dignity if it de-escalates agitation or engagement in physical or verbal abuse; a sense of dignity also comes from the person being able momentarily to give care rather than receive it. 

“From the ashes a fire shall be woken, A light from the shadows shall spring; Renewed shall be blade that was broken,” continues Tolkien's poem, and, though not the original intention, these powerful images of renewal and restoration paint a picture of something known as “paradoxical lucidity”, or unexpected cognitive lucidity and communication in some patients with severe dementia, especially around the time of death (though sometimes long before).  

Anecdotes are recorded of “unexpected, spontaneous, meaningful, and relevant communication or connectedness in a patient who is assumed to have permanently lost the capacity for coherent verbal or behavioral interaction due to a progressive and pathophysiologic dementing process”.  Some scientists are seeing them as a paradigm shift in the understanding and perhaps even treatment of dementia. I will never forget when a woman in the late stages of dementia, with little spoken language, was brought back to the nursing home weeks after hospital admission; she had been perilously ill. With bright eyes, she took my arm and, as if the mist had cleared for a moment, spoke warmest words of thanks to me for helping her on the day she collapsed. In another fleeting and irreproducible moment, a lady wished me happy birthday, before continuing her silent walk around the home. Witnessing such an event is ethically and emotionally transformative. 

The concept of remaining ‘alive inside’ even when abilities, language and memory are eroded by dementia is taken to the next level in Christianity, which teaches that life continues even after death itself. The Bible speaks of new life beyond the grave; the fire shall be woken, a light shall spring. And there will be a crown (and the gold will glitter). The Crown of Life is referred to, being bestowed upon "those who persevere under trials." Dementia is one of life’s severest trials; a cross to bear. In the 1912 hymn “The Old Rugged Cross”, another cross is spoken of, being the cross of Christ at his crucifixion. Clinging to that cross, living out a Christian life, the hymnwriter wrote of “exchanging the cross for a crown” at life’s end. After ashes, hope awaits the Christian. 

 

Playlist for Life is a charity encouraging people to create playlists for people living with dementia.