Songs From A Window: End of Life Stories from the Music Therapy Room

Foreword

Loss is so often at the heart of our human encounters, whether we are therapists, doctors, nurses, teachers, managers, parents…friends, we will all at some stage face the challenge of being alongside someone who is grieving the loss of something, or somebody. And for almost all of us the greatest of these losses and the hardest one to face will be death. We’ll do pretty well anything we can to avoid talking about it, or even thinking about it. We’ll gladly hand over our money to research organisations who work tirelessly to find cures for the very things that threaten to take our lives from us. And we’ll dip into our pockets again to support the amazing organisations who provide care and comfort for those of us for whom the cures will come too late. And that’s most of us – all of us in fact. One way or another we are all going to die, and dying was never going to be easy.

Shortly after I started writing this book I was diagnosed with bowel cancer. I was lucky, it was stage 2 and the doctors were able to operate very quickly and remove the tumour. However, a couple of weeks after the surgery I became extremely unwell and was rushed back into hospital, where I was treated for sepsis. At one point, I woke to find my consultant sitting in a chair at my bedside with his head in his hands. He looked up at me and apologised: ‘I’m sorry,’ he said, ‘I just don’t know how this could have happened.’ My immediate thought was: ‘Oh, my God, is he trying to tell me I’m going to die? Well, I’m definitely not going to have that conversation, that’s for sure.’ So, I responded with: ‘You look very tired doctor, when was the last time you had a proper rest?’ He began to tell me about his family, his newly born daughter and the pressures at home, particularly when no one was getting much sleep. I listened sympathetically and gently reminded him about the importance of taking care of himself. Eventually he checked my drip, looked at my charts and left me with a weary nod and a smile. I still didn’t know how ill I was, and that was the point – I’d successfully avoided having to talk about anything that might even hint at my own mortality. ‘Twenty years in end of life care, hundreds of clients, and just look at you’, I thought to myself rather scornfully, ‘what have you learned?’

This book will introduce you to a few of the clients I have worked with over the last 20 years. They are stories of my encounters with some extraordinary people at an extraordinary time in their lives. Some of these encounters are very brief, others not so. In the interests of confidentiality their names have been changed, as have many of the places and other details, but their stories are still true. It is, in part, a book about living and dying and music therapy, but, in writing the stories, I’ve come to realise that it’s mostly a book about relationships, the human spirit, hope and love.

A few years ago, at a conference, I was introduced by a highly esteemed consultant who described me as having the best, and the worst job in palliative care. ‘The best,’ he said, ‘because he’s got music, and with music you can get to very deep places with patients, very quickly. And the worst, because sometimes, it’s an absolute bugger trying to get back out again.’ We all know about the power of music, don’t we? It’s written into all of our lives – regardless of what we profess to love, or hate, music sits at the very heart of being human; it always has. It’s surely no accident that the world is full of songs: they identify us as individuals and define our groups; they help us to celebrate our victories and to mourn our losses; they capture our history and secure it for generations to come. We form deep associations with songs that other people have written; their words become our words, we cherish them, nurture them, and keep them in our hearts forever.

The songwriting process itself can be quite an emotional adventure; it’s highly unpredictable and often very mysterious. Melodies, words or phrases can appear as if from nowhere, surprising us, revealing things that we hadn’t anticipated (or, indeed thought, we’d known). In collaborative, creative relationships therapists will need to become fellow adventurers; helping their clients to trust and develop the process in order to express and understand what it is that they are feeling. This mutuality – the co-creation of care if you like – is an essential ingredient in an authentic, genuine, therapeutic relationship. And, as Irvin Yalom, the great therapist and teacher often reminds us, by facilitating change in their clients the therapists themselves become changed. Working as a music therapist in palliative care has definitely changed me in all sorts of ways and in some, I’m sure, that I have yet to recognise. Everyone I’ve met has had an amazing back story; and that’s because we all do. Regardless of who we are or where we’re from, we all live with the duality of being human, we are all known, and we are all unknown. Perhaps it’s at the end of our lives, when there is only one outcome that we’re absolutely sure of, faced with the great existential challenge of dying, that the two can begin to become one. It’s a matter of the soul and the shadow, isn’t it? Like words, and music.

Jonathan: There Must Be Some Way Out of Here

I became a music therapist fairly late in my working life although I’ve been a musician and songwriter ever since I could hold an instrument and get some sort of tune out of it. In my twenties I spent equal amounts of time engaging with and avoiding the music business. I loved writing, recording and performing but I never felt particularly comfortable with the music industry itself. I knew that something was missing, but for a long time I struggled to identify what that was. Through a combination of sheer good fortune and the kindness and belief of close friends I eventually found myself working as a community musician and began to learn how to make music all over again – this time with profoundly disabled young people.

It was during one of my early sessions in a special school that I first met Jonathan. He was 17 years old, in and had been diagnosed as profoundly autistic. I can remember this meeting vividly because, despite my many attempts to communicate with him, he refused to engage with me in any way, preferring to lower his head and cast his eyes towards his feet, his face a picture of boredom and contempt. This had been my first experience of rejection in my new role as a workshop leader and I left the session feeling rattled, fraudulent and summarily dismissed. Jonathan, I thought to myself as I drove home, really hadn’t liked me at all.

It therefore came as quite a shock when a few days later his mother called me. 'I’m Jonathan’s mother,' she said, 'you met him at school a few days ago and we think something quite interesting might have happened.'

'Mmm, well,' I said, 'thank you – but I think he felt I was pretty useless to be quite honest.'

'On the contrary my dear,' she replied, 'he thought you were rather fascinating and he wants to meet you again, very soon please, here at home.' I was far from convinced that this was a good idea but saying ‘no’ was clearly not going to be an option.

Home was a beautiful farmhouse in Berkshire, complete with an entire annexe, which had been converted for Jonathan. As I negotiated the long drive through the farm grounds for the first time I was still feeling rather bewildered by the request for my presence and, frankly, terrified at the prospect of meeting Jonathan again – and for that matter, his mother, Joan, who I was convinced was in for something of a disappointment. Joan led me into the kitchen where we sat at the huge farmhouse table and she offered me some tea.

'Jonny will be with us in a minute', she said. 'He’s very excited, he’s been telling me all about you.' My heart was sinking fast: the Jonathan I’d met didn’t speak, in fact Jonathan couldn’t speak – at all – and he certainly hadn’t seemed very excited by me in the classroom. But I wasn’t about to argue with Joan. She was a tall woman in her late sixties with eyes that looked straight into your heart and dismissed any notion you may have had of hiding. In Joan’s formidable gaze you were completely revealed.

'Now then,' she said, 'I’ve only just returned from a little trekking trip in the Himalayas and I’m so thrilled to hear Jonathan’s news. He’s been needing to meet someone like you for a long time and we’re so delighted that it’s finally happened.'

I decided to take a leap of faith. 'Does Jonathan talk to you?' I asked.

'Well of course he does my dear, I’m his mother, he’s always talked to me. Oh, not in the way that a lot of people think their sons talk to them, but talk to me he does, in his own way, and I can hear him. Of course!'

'What has he told you about me?'

'Well, that he thinks you can help him to come to terms with some of the things that are frightening him.'

'What is he frightened of?' I asked.

'Well. Living my dear, living and not dying.' I took a breath or two and sat quietly for a few moments. 'Why does Jonathan think I can help him?’ I wondered. I was trying to sound calm and in control but in truth I was beginning to feel hopelessly insecure.

'Because Jonny knows these things about people, always has dear.' I sipped my tea, took another breath and asked gingerly:

'Then why do you think he was so openly dismissive of me at school last week?'

Joan placed her hand on top of mine and smiled. 'Oh that! Oh! he does that all the time. He’s tough you know, especially if he doesn’t think you’re the real thing. But sometimes he does it to test you; it’s how he gets you to remember him.' She giggled and smiled at me.

'Okay then. Shall we go and see if he’s ready?'

Throughout that late summer and autumn, I visited Jonathan regularly. Our music sessions were always preceded by tea with Joan, who would help me to piece together the story of Jonathan’s life; a young bright man trapped inside a body that simply couldn’t hold him. I began to see glimpses of him during our music sessions, particularly when I was singing songs that we just made up in the moment. Jonathan couldn’t make any verbal contribution but somehow this didn’t seem to matter: I sang about what I saw and what I felt, and being with Jonathan made it feel easy to sing for both of us. I would check things out with him and he would shake his head from side to side excitedly while fixing me with a stare not unlike his mother’s. He never smiled at me but, from our very first session, a bond between us had begun to develop and my fear of being rejected by him was soon replaced by something much more exciting. I began to look forward to our sessions and felt very alive and full of energy when we were together. Looking back, I don’t think I ever really knew what I was actually doing, but I knew that I wanted to be there.

'You must become a professional music therapist my dear.' It was late in October and Joan had been listening in to our session from the next room. 'And Jonathan agrees.'

The truth was that I’d already decided to train as a music therapist and had managed to get a place on the course at Bristol University. Working with Jonathan had certainly influenced my thinking and I was looking forward to studying and exploring some of the mysteries that seemed to be present when we made music together.

'Jonny is delighted for you', said Joan. 'We all are.'

On the day before I began training I saw Jonathan at home for our regular session. He was more animated than I had ever seen him, rocking in his chair, making fists with his hands and punching the air as he played the Soundbeam. [1] I had started singing 'All Along the Watchtower' and it felt as if Jonathan was prompting me from his chair: ‘More, more, keep going, don’t stop. We took the Bob Dylan song and made it our own by improvising the melody and changing the words: ‘But it’s OK now, Jonathan is safe, we’re all safe.’ I had no idea where these words had come from but every time I sang them Jonathan would stare at me with huge wide eyes and raise his hands triumphantly into the path of the Soundbeam, creating his own electrifying response. As the session drew to a close and I moved to the side of his wheelchair he reached out and placed his hand on my arm. This was very new; there had never been any physical contact between us before and I waited to see if this had been intentional on his part. Jonathan looked straight into my eyes and left his hand exactly where it was. Eventually we said goodbye in our usual way but by now everything had begun to feel different and I was in no hurry to leave. Joan and I sat in her kitchen drinking tea; she’d been next door, as usual, throughout the session and I wondered if she was going to comment on the music.

'Well, that was quite something my dear', she said. I sat quietly, not sure how to respond. 'I couldn’t help hearing what you were singing, it sounded important.'

'Well,' I replied, 'it felt important too. Jonathan seems different, closer, warmer maybe – I’m just not sure. I wanted him to know he was safe and that he’ll always be safe, whatever happens. I’m sorry, I’m not explaining it very well but it seemed to come from nowhere …'

She placed her hand on mine: 'You mustn’t apologise dear, something special is happening.'

'Maybe,' I said, 'but I don’t know what is.' Joan looked straight at me and said:

'No, but I think I do.'

I left the farm that day feeling tired and emotionally drained. I knew that something had changed, Jonathan’s behaviour had been so different and It had left me feeling very close to him and yet uncertain and concerned. What had Joan meant when she’d said she thought she understood what might be going on? I hadn’t asked, she’d seemed concerned too and the mysterious bond between her and Jonathan was a boundary that I wasn’t ready to cross.

The following morning, I left home just before 8 a.m. and made my way to Bristol University to begin my first day of training as a music therapist. At lunchtime I turned on my mobile phone and picked up a voice message from Joan to tell me that Jonathan had died at home at 8 o’clock that morning. Her voice was calm and peaceful. 'I’m okay' she said. 'It was very peaceful and he was ready to go.'

I was shocked and upset but stranded in a residential weekend at university that I had to survive and so I kept the news to myself. I spoke to Joan briefly that evening:

'It was lovely,' she said, 'desperately sad to say goodbye but he was ready. He told me he was ready.'

A few weeks later, at Jonathan’s funeral during a private moment with Joan, I remarked on the coincidence of the timing of Jonathan’s death and the beginning of my training as a music therapist.

'Oh, my dear,' she said 'that’s not a coincidence. He simply waited until he was sure you were on your way.'

I will always associate Jonathan with my decision to become a music therapist. I don’t think that I’ve ever felt that he’s not been around, somewhere, probably giving me a long, hard look. There is so much that happened in those few short months that I’ve never been able to explain, but over the years I’ve grown very comfortable with simply being a part of the mystery. Joan has her own way of explaining that last remarkable day: 'It was the very best thing you ever did, my dear. The last time you saw Jonny you let me know that something was very different and so I stayed with him in his room, all night, and I was there with him when he died. That was your gift to both of us.'

As I struggled to come to terms with my own grief I wrote a long letter to Jonathan, remembering our first meeting and our subsequent sessions at the farm. In the final paragraph I wrote: ‘Well, Jonathan, I don’t quite know what to do with all of these feelings but I suppose that one day I’ll have to do what I always do, and put them into a song.’ I note as I write this today that my song for Jonathan has yet to be written.