Tag: caregiving

Last reflection about the project and my journey throughout unit 3

Today I woke up realising it’s the very last day of academic hand ins. It almost feels like the end of a very chaotic time (in the best of ways). I waited to do one last post on the day to have a true sense of overall reflection, though the idea of finishing a masters feels unreal.

Looking back at Unit 1 and 2, all of the activities that we undertook, all the feedback that we were giving, starts making much more sense. There mini steps into building our confidence, research methods and our strength towards believing in what we say/do/research.

Looking back at Unit 3, I realise the importance of consistency within research and the magic of testing ideas. I have found it liberating to be open to failure and to accept that it is as important as getting things “right”. Looking back, moving away from writing and online community building feels like a big step for me.

It’s easy to get stuck with an idea, more so if it feels safe. I had done that for a while because it felt controllable, when so much has been out of my control for the past year. But what I have learnt during this unit is that most is not really under our control, only our energy, resilience and perseverance truly are. So, if I have those elements in mind, no matter how bad an idea can turn out to be, it is still worth giving it a go. No matter how uncomfortable trying something new might be, it is still worth getting there and doing it.

I wondered: what agency do I have to even think I can make music? How am I meant to lead a composer (who has been trained for years) into creating what I envision and have researched? Why would people want to listen to a long piece and care? But the truth is, after these doubts emerged, I realised I genuinely had an answer to them.

Yes, I have never tried making music. But I have listened to music my whole life, everyone in the world who can, has listened to music and has had an emotional connection to a song, or a sound. Music reaches all corners. I choose it because it allows the message to be spread no matter the language, no matter the age, no matter the gender or race. It just is, music.

Then, I wanted to make sure I kept my project accessible, as most times I preach about the importance of inclusivity and accessibility. I decided to incorporate dance, and test it – so that in the future, I can develop the piece into dance as well.

I wondered again, what agency do I have to direct or work along a dancer when I’ve never done that before? But again, I had many answers to that.

This is when I realised the importance of research, consistency and vision.

The people I ended up working with for this project – are fascinated with the concept and share the drive and passion to make it happen. They’ve listened to my feedback, my opinions, they’ve read the cancer caregivers stories, they’ve soaked up the emotions, I first hand explained my own. They took it, they respect it, they admire it.

Recently, I was sent a dance draft to one of the pieces Cristina and I have been developing, this one is the most important one: Love (state of pureness)

It was probably one of the most beautiful things to ever happen to me, to see my long time hard work and vision being danced to and represented with such care and respect. It showed me that the project is now taking true form, and that the research truly is a strong foundation to work on.

Furthermore, I love how open Cristina, the musician, has been to my thoughts and feedback. Listening to the emotional ride I intend to show and explaining ways in which this can be showcased. I send her examples and explain her – I direct her. I have only directed film in the past, for me this feels so out of my comfort zone but in the most fulfilling way. I want caregivers to feel this journey and resonate, I want non caregivers to listen to it and truly be aware.

Conversations between Cristina and I, working on the piece “Strength” – explaining I visualise a crescendo, and a more orquestral incorporation of sounds – with some dust in it to represent the particles of hopefulness. This piece, shows resilience, pushing through, hopeful news, holding to the good.

My journey throughout this unit has been a rollercoaster of emotions. There was a point where I felt so stressed and anxious because my mum’s newest scan was coming up. The results were not good. I don’t share this in order to share my sorrows, but instead to explain that cancer caregiving truly is a journey of constant uncertainties and mixed emotions. I hope, truly, I am able to portray that through this long piece of music. I hope it makes people feel something, that is sparks a sense of empathy or better understanding towards cancer caregivers, who are often met with this role out of nowhere and don’t really know where to start. I hope it gives them a voice through melodies and they feel represented it, that there’s someone out there listening (literally).

This unit 3 has changed me and it has taught me many lessons I will carry on for a lifetime as a person and as a creative.

That’s my final reflection.

Jumping over the fence

Slowly slowly I’ve been walking away from home. It all started by the beginning of this masters (literally inside my room), my room as an allegory of a comfortable safe space. Though the process of research and the more calculated risks I had taken, I’d move away from my room into the living room, still safe but more open. As time flew by, closer to the third and final part of this master I have found myself swinging back and forth between the door to go outside and the inside of my home, a thin yet bold separation of spaces. The unknown and the known. The familiar vs. the uncomfortable. The mystery vs. the spoilers.

It was only recently, and I mean very recently when I just shut the door behind me, ran through the front yard, jumped through the fences and ran through the freshly cut grass while getting wet by water sprinklers. Or should I just say, I got out of my bias comfortable box.

I guess this is why this masters follows this structure – and it is all making sense.

A question that evolves is a question that keeps getting explored, and as you start learning more answers new questions arise…new ways of seeing naturally emerge and this is good. A static question means no interventions have been taken, no movement has actually happened, when you move you’re in motion, when you’re still you just see the same wall over and over, even if it means from different angles. I’ve taken this time to approach movement, but also reflect on stillness, ask the uncomfortable why’s and most importantly grow more confidence in the how’s.

My latest big jump has been through drafting my evaluative report, as any evaluation I took time to observe and put together all the work I have done throughout these months, learning about the importance of consistency and perspective. During one of the parts that I had to fill out, positionally was a particularly difficult one – why? because as I was writing I had realised that perhaps, seeing what worked and what didn’t should be enough proof to turn the information and translate it into something impactful and accessible. I had been so focused in writing as a way for self-expression that I’d forgotten or felt blurred about other mediums of expression that happen to be even more accessible and rare within the caregiving field.

Such as what? Well, theatre, dance, music for example.

Not long ago I had been with a friend who is a contemporary dancer, he was telling me he had finished a project in which a filmmaker was writing a story and the dancer was performing that story through his body movement, no words. How accessible, how raw and how honest. I then remembered how much I love going to the ballet or the opera and how in those scenarios stories are too represented with little words and much more bodily expression – and what a beautiful way to perform story and self-narrative than through the most accessible and human mediums such as sound and movement.

What a way to do these stories justice than by embodying them in artistic expressive forms that can then be shared with cancer caregivers of all walks of lives and in whatever stages they’re at but at the same time, be able to raise awareness of the inner journey of these heroes.

Stories go beyond words and yet words can still be used at the foundation.

So I wrote this (spoken word – and share it with a cancer caregiving community – it got 30 interactions)

My life changed in December,

I was hit by Turbulent news

and I wondered How and why

How can life change so suddenly

Why does my mum have to be the one?

My heart aching with so much fire inside

Sadness withheld in order to keep things

“Normal” But nothing was normal,

My radiant mum,

the flower that blooms with most liveliness

struggling,

slowly fading away like the sunset

I want to hold on to her forever

And her warmth be the shield to this unfair life

I want to make new memories with her

but none that include

Cancer

Cancer

A word once so scary and now…

Now it just feels like a day to day word

Easy to use,

difficult to be asked about

My heart aches along with my thoughts

and the Possibility of loosing her,

Of another twist and turn

Makes me want to be with her at all times,

To enjoy every single minute as we can

But she encourages me to live my life

To not worry

So I listen,

I listen

because I care and I know she has it worst

Way worst

But that doesn’t invalidate our thoughts

No mindless guilt of whose story it is to tell

You’re your own voice, with your own pain

With your own fears

And when you see the person you love the most

Face the possibility of death

In such proximity

It’s shattering

Its a dagger through your soul

and you can’t get it out

I befriend it

And it starts hurting a little less

And I start accepting the new reality

Slowly, By being present, grounded

At times it’s all better,

At times it’s all worst,

Like living in a limbo or being caught up in a delicate web

While we’re in there,

We remember we’re alive

They’re alive

We can breathe

They can breathe

We both feel,

We feel together

And whatever comes,

Whatever is,

It is worth remembering

We’re with them through this

From the 30 interactions, most of them expressed sincere gratitude for being able to voice their feelings and opinions in a way they could not. This in itself has once again shown me the power of expression, not to be mistaken with the power of words, but expression in general and how there are different mediums in which those stories, feelings and journeys can be turned into art so that these carers can then re-access them in a new form and feel connected to a work they’ve been part to, speaks to them and to others.

Last tutorial & term reflection

My last tutorial was as enriching as ever. Discussing my project in a fruitful manner made me realise how much I’d learned along the way. Not only had I gone off my comfort zone but I had overcome many small obstacles across the way, swimming deeper into a sea of uncertainty that I had now learned to embrace.

Starting this research journey, I had lots of big ideas in my mind – but the practicalities of such were slightly off. They were big but were they authentic? Were they trying to be solutions instead of means of research? I realised I had started with big ideas because like many, we’d identified problems and like the entitled students we kind of are, we believe we have the solutions right away.

It has never been more clear that to learn what would suit for a or b scenario/problem, it is important to test those ideas, tweak them, actually engage with those which ideas are intended for. I am proud that I am not doing what I initially had come up with because otherwise it would mean I stayed so safely in my comfort zone I had forgotten the whole point of doing this masters.

Exploring my skills, my interests, my directions throughout research, testing and engagement helped me understand that not everything is the initial layer we first encounter. It takes time to analyse, observe, reflect, engage. I have learned to inform myself from different sources, most importantly from real literature, journals, published papers, google scholar and books have been a great help. I have found incredible facts, and research interventions that have inspired me to realise my own journey – or at least, understand it better.

I no longer believe that when there’s a problem, or a gap identified, the key is to come up with an answer or solution right away and stay stubbornly with it; but instead, I believe in the importance of exploring it, understanding it, testing thoughts, engaging with what the audience might need and so on. I know there is always fear of failure, I certainly felt fearful of sharing or asking for stories from such a delicate topic – but I remember the importance of transparency and ethical research – and I was upfront from the very beginning allowing people to understand my reasons for asking and creating.

Somehow my project became about writing, about narratives, about people and about cancer caregiving. A year ago I would’ve never imagined I’d be doing a project about this and so taking the courage to explore it and through interventions, analyse the way of doing it feels like a sign of growth. Interventions aren’t solutions but instead bridges to understanding a little better.

I am beyond grateful for my tutor, for guiding me and pushing me throughout my research. Helping me understand how important it is to stay authentic and to trust my north start. Authenticity, autobiography and authorship are the elements involved in my research – and using this as base for further interventions I know I will eventually have a formed project I’ll be proud of and know it will be useful for my stakeholders.

I have definitely grown throughout this term, things have clicked. I’m ready to put all this knowledge to practise for the next term.

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.