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