I am now in a space of mind where my topics of research feel way more clear than before I started this journal. As you might see, I’ve changed angles throughout my time researching but not drastically nor without purpose, instead – use this as proof of deep research and interaction.
One finding leads to another, and so on – this cycle leads to clarifying certain aspects of the journey, taking others away and realising what’s tangible and applicable – as the course states.
Process:
Calculated strategies and risks, narrowing down & understanding the angles
I started the journey believing I wanted to explore healthcare, wellbeing and creativity in some way. I first wanted to incorporate entertainment programmes within hospital (still a valid idea but not one I wish to pursue during times of a pandemic; not just because of it’s legal limitations but because I do not wish to put anyone in harm; I also no longer want to work as the producer, overseeing other’s creativity but instead become the creator or one of the creators).
Continuously, I thought I’d advocate to improve cancer patient’s wellbeing through film screenings or through photography. However, my intervention planned had received approval (I had a person with cancer and her caregiver willing to do the photoshoot – and certainly, excited about it) – however, covid cases in Catalonia started to rise during the time and they decided to cancel the shoot because of safety. As an ethical photographer, only having one vaccine (rhythm of vaccines in Catalonia has been slower) and understanding the risk, I decided to stop pursuing this until I had my two doses and cases in Catalonia became stable again.
Next, I focused on caregiving, and focus on doing a story-book of caregivers stories through photography to highlight their work. There have been multiple campaigns highlighting the labour of unpaid caregivers and also, after my tutorial- I realised that if I were to do this somewhere, it would have to be in Spain to be able to take the photos. Approaching stories in a very generalised way felt impersonal and I thought I’d much rather have a specific focus to start with.
Here is when I joined a caregiving Facebook group in relation to cancer; which helped narrowing the focus. What I observed was that people felt comfort in sharing each other’s stories though most involved a lot of clinical wordings and asking for advice, a lot of hard stories to read about loss but little about the process or the journey. I had read those complex feelings on comments but not as much on posts.
Within the cancer group, I read relatability comments based on the cancer type. For example, people that would post their father’s battle with lung cancer would get comments expressing their own father’s/mother’s/husband’s/wife’s journey with lung cancer as well.
I myself seemed to relate too – as it’s much different the feelings that comes with a type of cancer that inoperable, or at Stage I than an inoperable stage IV.
Therefore my observation was: caregivers need support, they like to express themselves, most tend to open up more when others take the first step, many look for comfort, many feel alone – many feel scared, most relate based on stage/type of cancer though of course, there’s universality in the fear of a cancer diagnosis without detail.
I then looked up for a support group of the cancer type my family has been involved with because of my mum. As I joined it I realised the following: I, too, felt less alone by being with people who could directly relate. Rare cancers are very much frustrating, there’s less information about it, and the emotional health involved in accepting the diagnosis/prognosis is more complex.
Here, I decided to focus on sample study and focus on caregivers of rare cancer types; but in my research, to be specific, of cholangiocarcinoma/bile duct cancer caregivers.
So my intervention was to write my story in a narrative way, involving techniques of storytelling including engagement and beginning, middle and end. Shared it in book format, almost like an opening chapter or essay – and ask for feedback.
You will be able to read my evaluation of my intervention on another page of my blog.
As you see, my process has been expense and with some obstacles, but it has led me to a clearer path. I still am touching subjects of healthcare, wellbeing and creativity but through an accessible, needed and transferrable form.
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.
Today, as part of my research in caregiving of rare cancer types, I will be attending a talk by Caroline Criado Perez. Caroline is the author of the Sunday Times best-selling book ” Invisible Women”.
Please find further description of the book below:
Data is fundamental to the modern world. From economic development, to healthcare, to education and public policy, we rely on numbers to allocate resources and make crucial decisions. But because so much data fails to take into account gender, because it treats men as the default and women as atypical, bias and discrimination are baked into our systems. And women pay tremendous costs for this bias, in time, money, and often with their lives.
Celebrated feminist advocate Caroline Criado Perez investigates the shocking root cause of gender inequality and research in Invisible Women, diving into women’s lives at home, the workplace, the public square, the doctor’s office, and more. Built on hundreds of studies in the US, the UK, and around the world, and written with energy, wit, and sparkling intelligence, this is a groundbreaking, unforgettable exposé that will change the way you look at the world.
The importance of this talk
This talk arises from a post that a reader wrote in regards to the book; this act in itself showcased not only the importance of turning heavy data or information into easy-to-read and accessible narrative but also the importance of believing that someone out there, no matter who, might happen to benefit from it.
Therefore, building awareness & prevention.
As a result of sharing this personal narrative (Hope Edelman’s one) other women, who have not read the book, will be more alert about the signs, and might even get the book. Continuously, this led to Caroline scheduling a talk with Hope to discuss further information on data gap in medicine.
This is of relevant to my project
Because it demonstrated the importance of personal-narrative; one story can create a domino effect, affecting multiple lives of others positively if spread right – it helps create awareness and prevention, or support and relatability.
Again, this also shows that, turning “specific” topics such as “data and gender” into a book can happen. It can have an effect. It can contribute to some scale into a bigger problem – and make others relate, realise and take action.
It can reach multiple audiences, interestingly, different stakeholders can benefit from it.
What I have learned:
During the talk with Caroline Criado Perez and Hope Edelman
This discussion was extremely informative because we touched on the topic of gender gap but also, went deeper into the importance of storytelling.
Basically how communicating facts and figures in engaging ways, making the impersonal personal matters to spread a message.
Alongside the discussion, multiple comments on the chat were shared – many by different women expressing their own experience with being misdiagnosed or having a mother or husband who was unfortunately a victim of the data gap in research.
As people shared their personal stories, it was easier for someone with no relation to heart-attacks to relate in one way or another – after all, most of us can “try” to understand what pain would come with losing a loved one; and in this case, many did. Replying back comments of relatability, sending comfort or words such as “I understand”.
—
After the talk with Caroline, 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.
In 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.
Some current books available somehow related to this:
The selfish pig’s guide to caring by Hugh Marigott
Okay, so this book seems really interesting because it has an informal, direct, and open way of not just communicating the writer’s journey of being unprepared for caring but also touching on subjects that are relatable and applicable to many who might find themselves in the same boat. It has a nonchalant air to the writing but I like its clarity in what the book is NOT about. Stating he’s not a medical practitioner nor psychologist nor it’s a how to care, but instead lessons, learnings and reflections that hopefully resonate. The book has got 247 ratings, most of 4.5 stars on Amazon and some of the comments include:
“This self-help manual is a delightful change of pace for the caregiver. With humor & practicality, Mr. Marriott provides understanding & support for anyone who’s dealing with the frustrations & stress of being a primary carer for an ill loved one.”
“Common sense different book for the 24/7 care-giver. This is a must. He writes and has a bit of humor woven into the very helpful chapters. It is not like other books which dwell on the legalities. He tells what to expect, what you may feel, and options for dealing with the issues and stress…all in a caring way. He lived it himself so he knows what it is like”
“This book was written from the caregiver’s point of view and I really liked that a lot. There is almost nothing out there that speaks to the person doing this lonely job. “
“This book helped me realize I was not alone. I would recommend it to anyone who cares for anyone especially a spouse. “
“First time in a few month of my caring life I was able to laugh at myself and put things in perspective. My piglet (Person I Give Endless Love and Therapy) is sleeping 🙂 I got stronger. “
Things I Wish I’d Known: Cancer Caregivers Speak Out
by Deborah J. Cornwall
Family caregivers are the unsung heroes of the life-saving drama that’s triggered by a cancer diagnosis. Nearly three quarters of American households will find themselves caring for a cancer patient at one point in their lives. This book is the first to capture their thoughts, feelings, and insights on a large scale. It is based on 101 formal interviews with non-professional caregivers (some of whom are cancer survivors themselves), covering 122 patients in 19 states and Canada.
This book also has 4.5 stars, on Amazon including comments like:
“Wasn’t what I was looking for. I needed support advice. My Sister had stage 4 pancreatic cancer and she was extremely angry. I needed help understanding the stages and how to help support her. As well as help me not get upset with her for yelling.”
“Deborah J. Cornwall eases the guilt of the compassionate caregiver who may have begun to resent their role even as their concer-stricken loved one struggles with life and death. In “Things I Wish I’d Known: Cancer Caregivers Speak Out, the stories of those who have been there elegantly portray the struggles of those powerless in the face of watching a loved one so ill”
Conclusion:
My whole life I have been keen to help others, to advocate towards important subjects and most importantly, have been a firm believer in self-expression and compassion. Life has thrown a very uncertain situation my way, and in the way of many other daughters currently affected by this journey. I have come to understand, throughout this process of intervention, research and reflection where I’m headed.
She is his sexuality. 0:28 his sexuality is his cross to bear, a part of himself that is a burden to be carried never to be embraced. Throughout part 1 he struggles with his sexuality. At the end he rejects her, and he and the piece of himself he has rejected are both dying. Beginning part 2, she approaches him and he is ready to be destroyed by her, but instead discovers that the thing he was sure would destroy him instead lifts him up, and he learns to recognize and embrace the piece of himself. 3:49 He becomes a champion of this cross he was sure would crush him. In the end, although there is great pain in this admittance, he finds salvation in accepting his sexuality.
Being a carer has always been an existing role, in different tribes at different times. At times, people have been carers without even knowing so. While being a carer is no easy task, it is often something we can undertake love and little experience as our motivations come from a good place at heart. However, there is a difference between occasional care that does not alter an individual’s lifestyle and long-term, heavy-duty care in which the individual providing the care must make some sacrifices in order to have available time for several time-consuming tasks.
Again, caring and sacrifice feel like opposing words, as if caring was a drain, or it made one give up other things – such can signify a sense of guiltiness from the individual’s perspective as of course, collectively, we understand, caring comes from love, community and sometimes, as a natural cycle of life responsibility.
So why is the study of care such a complex topic? Well, it is because of a wobbly ground involving multiple mixed emotions, often conflicting ones. It’s not only wellbeing the main focus but the legal side of the subject matter, and also, the human rights that come with it – finally, to equate fairness in all citizens (in whatever scale that is achievable), it is important to first recognise the act of caring, mostly an unpaid task, as an alteration of an individual’s lifestyle and therefore, we must have a closer look at the individual’s quality of life landscape.
For instance, if the individual’s mother is sick, they have to give up their job abroad to move home and look after her, what consequences will come with that? Will the individual feel isolated? Will the individual give up exciting job prospects or will they be offered the flexibility of remote working in the time being? Will the individual get some financial support? Is the individual remotely qualified to be able to look after their sick mum and if not, how can they become a bit prepared to face such a journey? There are many alterations to the individual’s life all at once, and while the individual’s motive is wholesome, we must still acknowledge that it is affecting the individual’s life, regardless of their sense of duty.
Further thoughts in the study of caring involve the lack of recognition and praise these individual’s get, and again, while the motivations come from personal responsibilities and familial sense of priority, it is important to highlight the relevance of these unseen heroes’ work. And find ways in which we can celebrate the existence of these people, who undertake such roles that bring such alterations to their life, whether they choose to do this out of choice or not.
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
