A short walk from the platform of the Penge West train station in southeast London, a large white building stands along a small tree-lined street, far from the hum of central London. From across the road, through the trees, one can hear the soles of shoes shuffling on tennis courts, the popping sounds of tennis balls bouncing off rackets. Every now and then a person might walk by. Occasionally a car or a bus zips past. But mostly the area in front of 51-59 Lawrie Park Road stays pretty quiet.
The building is St. Christopher’s Hospice, and many of the people inside it are dying. They come here because they want to try to make that process a little easier. This afternoon, a group of them are sitting in the daylight of the social center on the hospice’s ground floor, listening to music therapist Gerry Prince playing a slightly out-of-tune piano with a natural wood finish.
When St. Christopher’s first opened in 1967 as a palliative and end of life care center for people with terminal illnesses, its holistic approach to caring for patients was not common practice. But its opening has since become associated with the beginning of the modern hospice movement. Today the building has four inpatient wards spread out over four floors. Within the wards there are 48 beds, divided into 32 single rooms and four shared bays. Nurses, doctors, social workers, therapists, and volunteers care for the people who live and die here, and for about 800 others who prefer to do this in their own homes.
Along with pottery, painting, creative writing, photography, and filmmaking, music is a central fixture at St. Christopher’s. It varies by the day of the week and the time of the day, but one can often hear it drifting through the cracks underneath doorways, spinning through wide open rooms, and whispering down the halls. Whether it’s someone playing an out-of-tune piano on a weekday afternoon, a Blues Brothers tribute band performing a concert in the social center on an overcast summer night, or members of a community choir laughing and singing their hearts out on a rain-soaked Monday at dusk, music, like death, is a part of life here. The staff of St. Christopher’s are in the business of alleviating human pain and suffering. For many of their patients, this is the count to start the song.
Seventy-eight-year-old Asquith Gibbes is hanging out way in the back of the social center in the spot that he likes: a gray leather chair in front of the big windows that look out over the carp pond in the courtyard. It’s Friday and Gibbes is waiting for his music therapy session to start. He’s wearing a nice suit and the afternoon light is at his back. Some of the others around him are having a late lunch, but Gibbes doesn’t want anything. He shakes his head politely when offered a small plastic cup of water. His midnight blue Days walker is sitting close by, on his left side. In the lenses of his glasses one can see two white rectangles. Reflections. He’s looking down at the screen of his black iPad, which he has half-propped up in a black leather case that doubles as a stand. He’s using his left hand to balance it on the small table in front of him. In his right hand, he’s holding a white stylus with a black rubber tip. He has a text-to-speech app called Predictable open, and he is typing. Gibbes has motor neuron disease (MND), or Lou Gehrig’s as it’s often called in the U.S., and when he tries to speak out loud, the sounds come, but the words don’t form. So this is how he does it now. One letter at a time.
“I used to sing,” Gibbes writes. “Mostly sentimental songs.” His eyes grow wide and he lets out a booming laugh. He does this a lot.
MND works by attacking the nerves in the brain and spinal cord. This gradually stops the brain’s messages from reaching the muscles. Over time, this causes the muscles to weaken and deteriorate. MND can in turn affect the way a person speaks, walks, eats, drinks, and breathes. Since Gibbes was diagnosed with the disease in April 2010, he’s been gradually affected in all of these ways. But he doesn’t dwell on it. He mentions it only in passing, between laughs and only when asked.
Born in Grenada in 1934, Gibbes lived there for the first 27 years of his life, while the island country was still under British colonial rule. He was there during the unrest surrounding the workers strike in 1951, a time on the island that would come to be known as the “red sky” days, because so many of its buildings were set ablaze. Gibbes moved to London in 1961, about six years after Hurricane Janet hit and about 13 years before Grenada became an independent state. He says leaving for London is his favorite memory of living in Grenada. “I was not in love with life there,” he writes, smiling.
In London, Gibbes studied law, got a job, fell in love with a woman and married her. The couple had two children together: a son and a daughter, born one year apart. He happens to have a picture of them with him. Now he has an entire photo album. It’s resting on his lap and Gibbes is slowly moving his fingers through it to find the picture that he likes. His face glows bright when he finds it somewhere near the middle. It’s a tightly cropped portrait of his wife standing between their two children, smiling. It was taken maybe in a living room or kitchen somewhere, at some other point in time, a time when Gibbes could still speak its story clearly. He used to be really good at that.
Gibbes was an orator once. He spoke mostly on race relations and worked with the Lewisham Race Equality Council for 25 years, from 1974 to 1999. He was also chairman of the Lewisham Police Community Consultative Group for 18 years before retiring in 2004. Five years later, Gibbes was made an honorary member of the Most Excellent Order of the British Empire for his volunteer work with police in southeast London.
Gibbes also did the occasional interview as part of his work. In a 1994 Channel 4 News piece about racial abuse and harassment in Lewisham, he can be heard speaking in his old voice, with passion and a sweet confidence, his Caribbean accent still intact: “There aren’t many cases of successful prosecution by the police in racial harassment cases. There aren’t many cases of successful prosecution by the local authorities. Those are real problems. And, therefore, the black community is asking [the authorities]: ‘Are you really serious about minimizing the harassment we are suffering?’ And [the authorities] are saying, ‘No, this is not the case.’ Because these things simply are not happening.”
Sitting here this afternoon, his hair a little grayer and his face a little thinner, Gibbes is trying to narrow his past down into a series of short sentences written in 18-point Helvetica type. “I had a good life,” he writes. “My wife and children added immensely to it.” Gibbes doesn’t possess even an ounce of self-pity, and he carries himself with a dignity that is as massive as it is warm. To this day he still draws a great joy from life. Still today, one of his favorite things to do, he writes, is “speak.”
A single burst of laughter rockets through the room.
With his walker and music therapist Gerry Prince leading the way, Gibbes starts walking slowly down the long hallway that leads to the music room: a straight shot past all the windows, then right down a shorter hallway, then right again down an even shorter one, then left into the music room.
When Prince opens the door, a small space lined with a treasure trove of musical instruments becomes illuminated under the white fluorescent lights. Guitars, drums, tambourines, xylophones, metallophones, shakers and sticks, whistles and woodblocks, a few microphones, a piano, and so on. Partially hidden behind all the instruments, there is a desk with a computer and recording equipment, and a small window that looks out to nothing much.
Gibbes sits down in a wooden chair with a blue cushion opposite Prince. He moves a tall djembe drum between his knees. Prince grabs an acoustic guitar, and they start jamming.
From where Gibbes is sitting, on top of that blue-cushioned chair and underneath that white beam of fluorescent light, melody trumps words.
For about 10 minutes, Gibbes hits the djembe in a 3/4 beat while Prince accompanies him in making what sounds sort of like a flamenco song. Gibbes stares off into space while pushing the song up to its crescendo, then rolling it back down again. He takes his time and does this more than once. Eventually the sound of Prince’s guitar lowers to a whisper and Gibbes is only rubbing his hands in rhythm over the rope-tuned skin on top of the drum. Then comes a long silence. Prince doesn’t say anything. So after about 30 seconds, Gibbes starts to speak.
Prince can’t understand him so Gibbes tries again. “You are not…?” Prince repeats back to him. But that’s not it. So Gibbes tries again. He does this five, six more times. Eventually, Prince pieces it together and repeats it back to him: “Oh! You were lost in the rhythm!” he says. “Well why didn’t you just say that?” Gibbes just rolls his eyes and laughs.
The goal of any music therapy session, as well as the method for getting there, will vary from person to person. But one will hear the word “improvisation” thrown around a lot among music therapists and patients. It often takes some experimenting to figure out what a person’s needs are and how to best meet them. At St. Christopher’s, the goal is ultimately to improve the patient’s quality of life. Gibbes says that playing music in his sessions comforts and soothes him. So that counts for a lot, considering the larger aim. But to sustain the pleasure he gets from it, some of the time Prince spends with Gibbes involves working with him to keep his brain and muscles in communication. Playing the drums and speaking out loud are both attempts at doing this. So is singing.
Before Gibbes and Prince end their session today, they choose two songs to sing, “Que Sera, Sera (Whatever Will Be, Will Be)” and “You’ll Never Walk Alone.” Frank Sinatra released two versions of “You’ll Never Walk Alone” in his lifetime: one as a Columbia Records single in 1945 and another as part of The Concert Sinatra album released by Reprise in 1963. Gibbes is a Sinatra fan. So he knows the song well, knows all the words. The only hard part is forming them. But that’s of minor importance to him right now. No, from where Gibbes is sitting, on top of that blue-cushioned chair and underneath that white beam of fluorescent light, melody trumps words. No, here in this room right now the words hardly matter.
Giorgos Tsiris is on a train traveling through southeast London, headed toward the Herne Hill station. He’s carrying a backpack full of small musical instruments, an acoustic guitar, and a hand-harp folded neatly into a small wooden case. Tsiris, like Prince, is a music therapist at St. Christopher’s, and right now he’s on his way to the home of his next patient. When the train reaches his stop, Tsiris gets off and walks out to the street, up a big hill and toward the home of Duncan Hird.
Hird’s wife, Pam, answers the door. She looks happy to see Tsiris and walks with him into the room immediately to her left. Inside, there is a large set of windows that look out to the street. There are muted red and beige curtains pushed to the side of the windows. The view is obscured only slightly by thin white window coverings. Hird is lying in a steel-frame hospital bed next to them. His sheets and blanket match the curtains and coverings. The tubes in his nose are passing oxygen along to his lungs and brain. He speaks only a notch above a whisper. And like Pam, he looks happy to see Tsiris, and very tired.
Hird was born in a small village on the west coast of Wales during the Second World War, in 1941. He grew up speaking both Welsh and English: Welsh to his mother, and English to his Scottish father. His family moved around a lot when he was young, often returning to his grandparents’ house on Anglesey, an island off the northwest coast of Wales. They eventually settled down in Manchester for a few years when he was around seven. But Hird remembers the visits to his grandparents’ home as being one of the great constants in his life up to that point.
Hird has fond memories of listening to his grandmother playing the piano. Until very recently, he still had that piano. It sat in the room where he’s lying now. He just didn’t get around to playing it much anymore. Hird spends a lot of time in bed these days. These days, things like dates, ages, and sequences of time are sometimes a bit hazy to him. He’ll sometimes fall asleep in the middle of a sentence, or forget where he was going with a story or why. But he still remembers things like the great joy he took in his solitude when he was a child. He remembers the deep pleasure he felt while listening to music, and he remembers that it was his grandmother’s piano playing that first sunk the hook in him.
“More than anything,” he says, “I learned early that music was a stimulus to my imagination. It was so different from life as I had experienced it up to that point. It gave me an introduction to a very different world.”
The thoughts alone seem to reinvigorate him. As he speaks them out loud, his presence begins to grow a little stronger, and the room starts to feel a little fuller.
Hird began learning how to play the piano when he was seven or eight. He started taking lessons at a Manchester music school a few years later, around the age of 11 or 12. His hour-long lessons each week were split mostly between learning the instrument and studying music theory. This was his main focus and interest for about the next six years. His playing would eventually begin to taper off as time went on. But it was while learning the piano that Hird learned how to really listen to music, to just be present with it.
Hird’s music therapy sessions are largely about keeping a part of his identity intact, keeping an ember lit and stoking the fire.
“That was the principle pleasure I derived from it,” he says. “Actually being able to listen, in a more concentrated way. That awakened my interest more than anything else ever had.”
Hird was consumed by music. It wasn’t just something that occupied the background for him. It was something that demanded to be listened to fully or not at all. His obsession with live music began when he was around 13, after he discovered that, as a music student, he could get discounts on tickets to all the local Manchester concerts. His musical fevers only ballooned and swelled as time wore on. By the time Hird met Pam in London years later, he was going to concerts almost every night.
Pam would occasionally go with him. But usually she stayed behind, out of only a mild fear that she might get bored and fall asleep. Or, more specifically, she jokes, that Hird might notice she’d fallen asleep. This sort of thing would not have been deemed acceptable, she laughs.
So, more often than not, Hird went to the concerts by himself.
Five thousand show programs, probably more. Up until recently they sat in box after box in Hird and Pam’s attic. In one, Sir John Barbirolli conducts the Hallé Orchestra. In another, an evening performance of Mozart’s Piano Concerto No. 21, or of Cherubino’s aria from the second act of The Marriage of Figaro. In another, the first performance in Britain of Leonard Bernstein’s West Side Story. Night after night of orchestras, operas, and musicals. Night after night of listening, really listening, to the pummeling of rawhide skins and ivory keys, the soaring voices and quivering strings, the calloused fingers and thundering peaks. Hird lived for it.
“Music was his life,” Pam starts to say. The sentence sends her briefly out of the room.
A little over four years ago, Hird was diagnosed with idiopathic pulmonary fibrosis (IPF). Pulmonary fibrosis is a form of lung disease in which the tissue of the lungs becomes scarred over time. As the tissue continues to scar and thicken, it starts to prevent the lungs from moving oxygen into the bloodstream and toward the brain. The “idiopathic” qualification simply means that the cause of the fibrosis can’t be found. The average life expectancy for someone diagnosed with IPF is two to five years, but this of course varies. For Hird, what all of this has translated to so far is an inescapable fatigue.
He no longer has the energy to do a lot of the things he once did, including listen to music. The loss of interest came somewhat suddenly not long before he was diagnosed with IPF. It may have started on a Tuesday, or maybe drifted into the weekend or over the course of several weeks or months. Hird doesn’t really know. But between him and Pam, they’ve decided that it started before he knew about the illness, and that it’s gotten worse since.
When they made the decision to sell off the piano and show programs, one can only conclude that it was their way to gain the upper hand, to show that they still had some say in what could be taken away from them and when, and to show that, even in tragedy, especially in tragedy, there is poetry.
Hird’s music therapy sessions work in much the same way. They are largely about keeping a big part of his identity intact, keeping an ember lit and stoking the fire.
“I think what they’re doing is keeping my love of music alive,” he says. “Although music doesn’t occupy anything like the large part of my life that it once did, I know that I would be very sick if it were to go. The music that we play at these sessions keeps me in touch, with all kinds of things.”
A lot of what Hird and Tsiris do in their sessions is improvised. This is partly because it’s uncertain what Hird will be feeling like that day. But there’s also a philosophy behind it. It’s based on the “music-centered” approach to music therapy that Tsiris and Prince both learned while training at the Nordoff Robbins music therapy center in London. The basic principle behind the approach is that all humans are inherently musical. The way we speak and use language. The way we move. There is a natural rhythm to it. So when something like an illness starts to throw off that rhythm, the idea is that music can be used to help get it back on track, or to at least stabilize it.
So sometimes Hird and Tsiris will improvise. Other times they’ll play music that is familiar: “I don’t want to give the impression that we sit down and bash out Rachmaninoff’s third piano concerto or anything like that,” Hird jokes. “If we get through ‘Baa, Baa, Black Sheep’, which is one of our hit tunes, then we’re doing quite well.” Sometimes Hird and Tsiris will just sit and listen to music. And other times they’ll sit in a room surrounded by instruments and just talk, about music or whatever else. Like today.
Hird was always a loner, Pam says. When he was a child, when he attended all of those thousands of concerts alone. But a certain bond has formed between him and Tsiris. Hird always looks forward to their visits. It’s one of the few appointments he has that he always tries to keep, even when he’s not feeling up to it. Sometimes, when it’s nice outside, Tsiris will ride his bike to their sessions. Sometimes he’ll tell Hird and Pam stories about his travels: where he’s been, where he’s going. Sometimes they’ll all tell stories. Hird and Pam used to love to travel. But they’ve been unable to do it since Hird got sick. So, in some ways, Tsiris meets them halfway now.
On one of their first visits, Tsiris brought Hird an album by German musician and composer Stephan Micus. The album is called Desert Poems. On the cover of it, a reddish-gold sun is setting, or maybe rising, behind a flat desert landscape. The silhouettes of five desert trees are scattered out across it. Blacker than midnight. Tsiris didn’t know it at the time, but Hird loves the desert. When he saw the album cover he told Tsiris all about it: A lot of people think deserts are lifeless, he said. But if one observes them closely, one can see that they are full of life.
Seven Goodge Place. A wet building with a white base that rises into brick. Rainwater is settling into the cracks and divots in the concrete outside. Inside, across a small ground-floor room and down a few stairs, is Apod recording studio. A 32-channel Mackie mixing console is hanging from the wall opposite the door to the studio’s control room. Its green audio-level lights are leaping up and down in the pattern of a small lopsided mountain. Each of the tiny green squares represents the hushed voice of 25-year-old Nick Gonzalez. Gonzalez is one of Gerry Prince’s music therapy patients at St. Christopher’s. He’s on the other side of the soundproof window now, sitting in his wheelchair in front of a Neumann studio microphone, rapping. Marion Tasker, a community artist with St. Christopher’s, is in the room with him, shooting photos and video for a YouTube video that she’ll fit together with the audio later. Prince and the studio’s owner and engineer, Jon Hall, are in the control room capturing Gonzalez’s voice and tracking it on top of the music he’d recorded at St. Christopher’s earlier. Gonzalez’s younger brother, Norman, is sitting a few feet behind them on a big black couch, hearing the songs for the first time.
“Suffocate,” Gonzalez reads out loud from the words he’s written in his black Moleskine notebook. “Till my heart and lungs feel weak.”
He’s spent a lot of time working on this line. It all started when he was young. Younger, rather.
While growing up, Gonzalez used to fall over a lot. He always had a lot of bumps on his head. His uncle noticed this and suggested that Gonzalez’s parents take him to see a doctor, which they did. Gonzalez was diagnosed with Becker’s muscular dystrophy (BMD) when he was 11 years old. With BMD, the muscles of the legs and pelvis begin to weaken slowly over time. Among other things, this can affect one’s ability to walk and breathe, it can create a great fatigue, and it can open one up to a host of heart and lung problems. If Becker’s has one advantage over some of the other more common types of muscular dystrophy, it is, perhaps, that it works slowly, takes its time.
Gonzalez has done a lot with that time.
Gonzalez was born and raised in London, but his parents are originally from Chile, where much of his family still lives. He talks about his visits there the way a sailor talks about the sea. Sleeping on the beach, and how it was cold and awful and still pretty great. The time he went fishing and considered having a hard-won battle with a sea lion before finally deciding to let his wild line drift loose. Gonzalez carries these memories around like they are shining heaps of gold dust. He smiles when he thinks about how many pounds that sea lion must have had on him.
What he recalls about his Sunday school classes is that he was able to rent instruments by the hour, and that he liked to experiment with whichever one he chose. What he remembers most about his family’s parties is that they would all play South American music and dance late into the warm Saturday nights. And what he will forever associate with being 16 years old is his decision to start studying music.
“I wanted a new challenge,” he says. “I wanted to start from scratch.”
Gonzalez earned a diploma in music and performing arts at Southwark College. He went to South Thames College and earned a second diploma in music technology. Then he enrolled at South Bank University and completed a bachelor’s of arts degree in music and sound design. This course, more so than the others, marked a turning point for him. It gave him the challenge and focus that he was looking for. Before that, Gonzalez had been dabbling in a bit of everything—hip-hop, rock, R&B, everything. He was mostly making music for other people. But after experimenting with the various electronics and recording devices involved in his sound design course, he grew more and more interested in avant-garde music and recording sounds electronically that can’t be picked up in the natural environment. “I no longer wanted to create music simply for the public, but for myself, for my own pleasure,” he says.
One of Gonzalez’s recording projects involved using telephone coils to record. The coils, which have also been used to spy on phone conversations, convert electromagnetic waves into speech. Gonzalez used them to record, sample, and chop up different sounds and turn them into music. It’s a well-known hip-hop technique but used in the context of electronic music. In some ways, it’s the opposite of pop music. “But if you listen closely, there is a rhythm,” Gonzalez says.
By the time Gonzalez finished his degree last year, walking had become a struggle. He’d started using a manual wheelchair to get around. But he also had a conceptual focus that wasn’t there before. He’d begun dreaming up new projects and possibilities, inspired by philosophers, physicists, scientists, and mathematicians as much as by sound artists like Ryoji Ikeda, Carsten Nicolai, and Pan Sonic. “Anyone can have a degree,” he says. “But the people who come up with new ideas and ways of thinking, they’re the intelligent people in the world. The mind, there’s so little of it that we use. Just imagine if we tapped into the whole of our brain, the things that we could do.”
Gonzalez decided he would take a year off to focus on developing his sound while saving up for a master’s in music technology. Then, last December, he was getting ready to take a three-month trip to Chile. He was scheduled to leave in January. But then he caught pneumonia. In just about every medical text written about BMD, pneumonia sits high on the list of possible complications. It can easily mean death and almost certainly mean a long hard road ahead for those who survive. “So, January was the hospital. February I was released. And I haven’t been well enough to travel since,” Gonzalez says.
“There are a lot of things I used to do that I can’t do now.”
Lay Back
Life has definitely changed for me
Don’t know whether it’s better or worse for me
Head in the clouds most certainly
Purposefully searching the world for peace
Suffocate
Till my heart and lungs feel weak
Constantly striving to show the best of me
—Nick Gonzalez
When Gonzalez finishes recording his vocals, his brother Norman lifts him up from his wheelchair and helps him over to the studio’s big black couch. He is exhausted. He falls asleep for a while as Prince and Hall start mixing the tracks.
The tiredness and fatigue that Gonzalez feels on a day-to-day basis is so intense now that it’s temporarily stopped him from pursuing his avant-garde projects. He’s of the opinion that music should be an exhaustive process, one that takes everything you have both physically and mentally, and both physically and mentally he is drained.
The music he’s been recording as part of his music therapy sessions takes a little less out of him. It also allows him to express himself. “Truth rap” he calls it. It’s become his way of connecting to a world that’s bigger than the one he’s had access to, a way to broadcast himself to a world that circumstance has insulated him from.
His sessions with Prince started not long after he was released from the hospital in February. He comes into St. Christopher’s a couple times a week for physiotherapy and music therapy. At their sessions, Gonzalez and Prince will improvise with different instruments and record and layer the tracks, the same ones that Gonzalez just rapped over today. He plays most of the instruments on the songs, but Prince will sometimes play on a piano or guitar track to add a little more melody.
Before his last session at St. Christopher’s, Gonzalez said that writing his songs and lyrics gives him a release. “That’s what music therapy is all about,” he says. “It’s a release from yourself. A way to express yourself while also letting your thoughts escape.”
His favorite line reads simply: “In a world full of hate and animosity.” It had originally been written as part of a full verse but he and Prince narrowed it down to just that one fragmented sentence, incomplete and repeated over and over, an invitation to the listener to finish the thought.
Rhythm and repetition have always been key components of Gonzalez’s music. So he’s pleased when he wakes up in the studio this afternoon to hear the sound of his own voice traveling through a delay effect and a pair of Genelec speakers. Prince and Hall are still editing the vocals. So the words just keep coming: Suffocate, suffocate, suffocate…till my heart, till my heart, till my heart and lungs feel weak.
Gonzalez says he’s hoping to get well enough to work on more avant-garde projects soon. He has plenty of ideas. One of them is to make a concept album. He’ll call it “EKG.”
The way it will work is, Gonzalez will take copies of all the electrocardiogram printouts he’s collected from his heart exams. He’ll convert the scanned images to sound, which he’ll then sample and arrange into songs. Each track will be named after his heart rate in it: 85 bpm, 84 bpm, 83 bpm, and so on. He has it all figured out and gets excited at the thought. “I can do it over a period of time,” he says. “So that it’s not just one year. But all the passing years. I could also do singles and release them each year. So, every year, as my bpm lowers—lowers, lowers, lowers—I can say, ‘This is my heart. This is my heart beating. This is the sound of it.’”
“I believe you can make music out of that.”
Author's note: Duncan Hird died a few days before the publication of this article. I would like to send my deepest sympathies to his wife, Pam, and to all his surviving family members and friends. RIP, Duncan.
