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”
“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”
Observation:
Based on the research of books available these two seem to be the most relevant in the act of caring, one centred in cancer cancer and the other one in general unpaid care. I have found both extremely interesting in terms of approaches as they’re varied, I will read both to have a better conclusion on it- however, from the examples and comments they both seem to be books responding to a community who is truly in need of targeted support books.
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.
