Tag: 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.

How can the work of caregivers be highlighted through creative activism?

Here’s the thing. Up until now I had been focusing on cancer patients and mostly because I experience what is like to live with one on a daily basis. I am aware it is though and it’s a hard reality to process, however, the diagnosis did not affect just my mother but also everyone in the household and most especially those who focus on giving her care, my dad and I.

This led me to the conflict of evaluating whether I should be focusing on patients or caregivers or both.

To start with, the doubts emerged in my head a couple of weeks ago, when I joined several Facebook groups of different cancer patients, they would get to vent and share their stories, send each other support links and different platforms where they could access information. One of the groups was only for friends and family members of cancer patients, the conversation there, while different was also quite similar.

Some people felt exhausted, anxious, fearful, guilty and all in secret. Most of those who identified themselves as the carer of the cancer patients highlighted that they had to stay extra strong for the both of them, extra positive, had to try to look after themselves and the patient. Their mental health wasn’t at all great and there was a partial guiltiness to this because “they aren’t the ones diagnosed” and they “aren’t the ones going through it”, only that they actually are going through the journey as well.

I used to always tell my mum when I was little that I’d rather die before her because I’d never ever want to go through the pain of seeing her go. Weirdly, as aware as I am today that it might sound extreme and anti-natural with the cycle of life, I still stand by saying that the thought of losing her is unbearable. And therefore, I’d much rather be the one getting sick than be the one seeing the person I love the most in the world go through it. It’s a very strange messed-up feeling, but thankfully, it seemed like I wasn’t the only one feeling that way. Many people in the group related and would share their own mental health stories about how they have been dealing with this whole change, secretly.

So, through my research on mental health and cancer patients, I did realise one very clear thing, there was a lot. A lot of information, a lot of research done trying to improve, observe and evaluate the factors of poor mental health in some patients and how to support it. However, the literature found for mental health, support in caregivers is a very reduced number. The few papers that do talk about however, do mention the increased levels of anxiety and depression in caregivers due to the responsibility and the emotional conflict they undertake.

And all of these thoughts lead me to my tutorial, yesterday 28th of June of 2021.

So what happened during my tutorial?

I updated my tutor on some of my findings, some of my thoughts and most importantly the direction I was feeling inclined to.

I started by explaining that my question is due to change but was not going to change until I had processed the direction I truly want to take. Also, after I have done a photoshoot with a cancer patient and her caregiver.

After this, I was suggested that I should have someone record or photograph the behind-the-scenes of the photoshoot, especially if my mum will also be present during the shoot, this would not only be used as evidence of my interventions but also as an emotional archive.

Furthermore, I expressed my concerns about my focus, about whether it is caregivers or patients and whether having such a specific narrow point on cancer made things not just more limited but also less interesting – and I say less interesting because there is beauty in the diversity of stories that can be told and found.

Through engaging in a very thought-provoking discussion, David managed me to do that he does best, lead me to answer my own question, quite naturally. And so I did, I then expressed I’d like to focus solemnly on caregivers, their labour and bring spotlight to the different faces and narratives these unseen heroes have to say. Some of the words that were highlighted through conversation where: legacy, historial archive, resource.

Moreover, I had made it clear that two of the creative mediums I wanted to focus on exploring were narrative and photography and they are the one dearest to me but also the mediums I want to be known for as I keep developing professionally. This masters is about taking calculated risks and being authentic to oneself and I am done running away from my interests for the fear of not being good enough at them – I will only be good at them and make them my own practise by being perseverant and believing in my skill and power to tell stories, not just this but it’s a good way to finally put myself out there and do a project for the benefit of others through my own work.

So finally, in short

My intervention will be

A book, containing the narratives of contemporary caregivers along with their photograph

I will measure how, all the different stories and faces that lay behind those in need of care, can be recognised and celebrated as seen heroes that through their kindness and dedication, make a difference in a person’s life day by day