Tag: journey

Everywhere at the end of time – The Caretaker reflection – journeys into music

I found out about Everywhere At The End of Time by exploring collective narrative into music. This album, lasts six hours, and focuses on the process of dementia. It was highly acclaimed and raised awareness within young people about the importance of empathy towards carers and people suffering from dementia.

This was a big turning point for me. I listened to the whole album and felt absolutely transported into the emotional and confusing ride of falling victim to such condition. I decided to explore this further by reading about The Caretakers process.

In 2011, Kirby released An Empty Bliss Beyond This World, attaining critical acclaim for its exploration of dementia. And then he decided to take it further by exploring it through its stages.

It can be found here: https://www.youtube.com/watch?v=LL998ajnjN4

Kirby’s interest in memory loss and the journey of dementia is similar to my approach to the emotional journey of cancer caregiving.

To find such an artistic reference was a crucial turning point for me because it confirmed the feedback I kept getting, explore beyond writing.

I then thought of music, a discipline I have always been keen on exploring but due to my lack of musical abilities I never thought I could. But then I thought – wait, why not? We live in a hyper connected world where ideas can still happen even if I am not necessarily the one making it, I can still be the one directing it or producing it, the one with the content and research a vision. This idea felt exciting, fresh and out of my comfort zone.

It would mean I would have to explore a process I never had before, and I would have to put all of my life learnings throughout this masters in practise.

  • confidence
  • leadership
  • communication
  • clarity
  • collaboration
  • research
  • pitching
  • vision

Would it be too crazy to turn these narratives into music? I thought. And what sort of music? with lyrics, no lyrics? what genre? I decided to eliminate any barriers that could stop people from having access to it – I’d leave it up to interpretations and emotions. Therefore, it only made sense to stick to experimental, electronic, classical – no lyrics: no language barriers. No voices: no gender bias. Just music, just emotion, just feeling the journey – the rest if up to interpretation.

It felt right. It felt timely. It felt unbiased and fresh.

I’d then structure the experience of going through cancer caregiving into four fragments:

I frustation

II sadness

III strength

IV Love

In no particular order – but from all of the emotions and comments all of the cancer caregivers mentioned, all tend to fall into some sort of the above categories.

Some include:

Hopelessness, hopefulness, anger, guilt, defeat, injustice, depression, love, care, compassion, empathy, sacrifice

As a short reflection, coming across The Caretaker’s work showed me how the process of an illness, or of a journey can be depicted through alternative narrative forms. And though, it might not be my background, I still have a voice and a vision – and I can work collabortively to express it. I have worked and researched these emotions meticulously for such a long time, I am aware they can be done justice through music.

What I have learnt within myself is that there really aren’t many excuses as to why we can’t try something, if we have a vision and a purpose, most things can be done. The key is to be able to find people who are willing to believe in it, a drive and a solid foundation of research for everything to make more sense. I am proud of myself for taking this step, it’s an unexpected one for me, one that might or might not help with representation and empathy-creation but that’s for me to find out in my next intervention when the music piece is done! & if it’s not well received, that’s okay – that’s another learning and a new beginning.

Hope Edelman’s trajectory and the importance of self-narrative in link to my project

Hope insisted we stayed on to discuss not just the talk but our own personal feelings – I took this opportunity to express my thoughts about narrative and my own project. Unfortunately, this wasn’t recorded for ethical and privacy reasons and Hope mentioned that, if the time is found, she’d be able to send me written feedback about the project. I have send her an email with it as well.

Anyway, I expressed my project: I have caregivers on one side, patients and two objectives: awareness and/or support.

She used her own example, as a New York Times best-seller of the book Motherless Daughters, that highlights her own story with grief, after her mother passed away from cancer when she was 17.

She explained that during her university studies, she too had been given an assignment to develop a portrait project on someone or something and she had decided to do it on Bruce Springsteen and music of her generation. She said it was something that resonated with many and that was relevant to the time. However, what she noticed was that she would spend most of her time actually writing about a boyfriend she had the year after her mum died (also the year of a lot of Bruce Springsteen). What she noticed was that she had been with him because he was also going through grief during that period, and in a way – they’d found comfort in each other without necessarily talking about grief.

She had found herself writing about grief without knowing – and when she presented her essay project to the class, her teacher pointed out the project wasn’t about bruce and his music but instead, about grief and support.

She then used this base to start writing a book proposal and went on to collect 24 stories from different women going through the same grief of loosing a mother. What she realised is that some stories carried similar elements and others complete different ways, but what she thought was most wonderful was the idea that they found comfort in speaking to someone else who understands.

The idea of feeling alone during one of the hardest times of your life was something that Hope had mentioned was very relevant to her own story; and that when she created a book story she had initially intentioned it to be just about the other women’s stories and not her own. However, her teachers suggested that it was her story the conducting one and that to leave it out would be again, like the Bruce Springsteen case.

She agreed and drafted her proposal, this got her an agent and publishers interests – this served as a prompt to write the full book quite early on in her life after that project, and when published she mentions being contacted by so many women across the world, through letters, letting her know how much comfort and relatability and support her book brought to them. She mentions the book as her own intervention, along with the essay and the proposal.

n terms of feedback, I got to briefly explain my situation along with the idea of the book and the complex thought between building awareness or creating support and she expressed that by creating support I’d be ultimately building awareness. She also told me include my story as the conducting one, as proven with my research, people often need that push to open themselves up in the first place. Finally, she suggested once I have a first draft to send it over.

What I have learned from Hope’s trajectory

Much of Hope’s journey resonated with mine. Caught up doing a masters where I cannot back down from because of a scholarship and therefore, having to do it while being a caregiver has been complicated. And much of my headspace does not process focusing on other information that isn’t what my reality currently is. I have gone in cycles trying to understand what is it that I want to achieve? Who am I trying to help? What am I focusing on? Because I’ve gone through so many unexpected changes in a matter of six months that things can be a bit of a rollercoaster.

I find myself in most of my free time understanding how to deal with complex emotions, the other time I spend speaking to people who are going through the same and the other, reading up on heavy data hoping to find some optimistic journal to hold on to and finally, most of the time I’m supporting my mum with fear and love.

My writing was clear: it resonated with many people currently going through the same, being the main supporters of a loved living with a life-threatening disease

However, there are little books about the caregiver’s cancer journey; how to support oneself, the other and how to keep your life going as well. The only available ones are few that discuss a lot of the technicalities but perhaps, little about the complexities of thought and heart.

The brief but intense and practical discussion with Hope helped me understand where my project could head, who it could support and how I could make it happen. This in itself, has served as a way to understand and validate the relevance of narrative as a tool of support. And to start feeling less guilty about not focusing on a theme which is not linked to my personal circumstances.