1. Andrew says: “When the idea for this project came to me, the mother of a friend had recently passed away and at her memorial, I marveled at how there was so much genuine love for her.”
“I began to wonder what it was about this woman that brought that out. She wasn’t religious, nor was she conventional in any way I could pigeonhole. She had this magic in the clear and wise way the spoke and never took herself too seriously.”
2. “She laughed more than anyone I knew, reacted with sincerity and interest to her friends, and had so much passion in her fearless curiosity to travel and explore different cultures of the world.”
“She was exceptional, in that she emanated joy, and never seemed to show fear or self-consciousness. She was, quite simply, one of the best people I’ve known, yet, regrettably, was no one you’d ever learn about if you didn’t know her because her material accomplishments did not include fame.”
3. “I thought at length about how people become wise and exceptional in this way, and I’ve come to believe that it is primarily motivated by overcoming the fear of death.”
“Some people have jumped over this hurdle but most of us haven’t. Ironically, this fear of death that we all have creeps into our lives and becomes a fear of living. Ultimately, I wanted to examine the unique and special impact of my friend’s mom and try to find others like her.”
4. “This led me to the conclusion that I may find others like her in palliative care, since that population doesn’t have long to live.”
“After reaching out to numerous hospitals and being told ‘no’, I found Dr. Marwa Kilani at Providence Holy Cross Medical Center in the north Valley of Los Angeles, and she instantly recognised what I sought out for this project and agreed to work with me.”
5. “Dr. Kilani sees several dozen patients a week, and every time she encountered someone exceptional who had made peace with their condition and was willing to talk about it, she would pitch my project to them.”
“If they agreed to take part, I would drop everything and drive an hour to meet them. I had prepared a list of 30 of the big questions, and would spend a few hours interviewing them and then take their portrait. It was an incredibly moving but difficult period of my life, and I marveled at what I witnessed over and over: the uncanny ability of these individuals to cancel out the noise of trivia and, with enlightened clarity, focus on what was truly important in their lives.”
6. “As soon as I had photographed the first few, I realised that I could learn so much from what I was hearing, wisdom I’d wish I’d had years ago.”
“The project took on a life of its own and consumed me, and I began recording hours of interviews that I would then excerpt and place next to each portrait. Additionally, I gave each of my subjects a piece of paper and asked them to describe how they were feeling. I wanted to personalise everyone by showing their handwriting, and, moreover, attempt to capture their souls on film and in words.”
7. “It became increasingly clear to me how universal this project was.”
“There was so much of value we could all learn – healthy or ill – from the authentic, hard-won wisdom of these men and women. And yet, society would deem them unremarkable for, like most of us, they lead lives out of the spotlight of media attention and won’t be mentioned in history books.”
8. “I was haunted by what I was hearing in their stories and beliefs.”
“There was a profound richness, poignancy and simplicity that illustrated so clearly how we could learn what we all seek: to lead more fulfilling and loving lives. These men and women were no different from any of us, and – sooner or later – we would all be experiencing what they were. I purposefully excluded information about their professions or what condition they were dying from to emphasise this point.”
9. “This is the most difficult project I’ve ever worked on.”
“Actually, the interviews were not the hardest part, everyone I spoke with was willing and interested (these were my pre-conditions for the project). I was tremendously moved and often inspired by what I was hearing and seeing, but the real challenge was carrying this project on my shoulders for two years and absorbing all of its emotional weight. I felt the mounting pressure of duty and obligation to accurately portray my subjects, without pretense or ego, and reveal who these men and women really were.
Currently, I’ve put together a site of the project at rightbeforeidie.com and am working towards publishing a book and exhibiting the portraits, interview excerpts and letters.”
10. Dr Marwa Kilani has also written an introduction for Andrew’s book.
She writes: “We had expected lovely portraits of our palliative care patients, especially given Andrew’s ability to capture light and colour as he has wonderfully done so in his photographs. But what we received was markedly much more. Revealed in each portrait was the depth to each individual soul; the window to each person’s struggles as well as their aspirations.”
11. She adds: “At its onset, palliative care was the root of hospice care: treating those with terminal conditions at the end of life.”
“But, as patients, on average, started to live longer with chronic and serious illness, palliative care was able to break away from the terminality of care and provide ongoing supportive remedies in parallel with treatments such as chemotherapy, aggressive heart disease control, organ transplantation management and other forms of disease-modifying therapies. And it is because of this approach to whole person care that palliative care is now being accepted so widely throughout the world.”
12. “Attending to the physical ailments as well as the emotional wellbeing, spiritual health and the social dynamics is how palliative care contributes to the overall comfort of each ailing individual.”
“Getting to the core of the patient as an individual was the key in recognising how best to formulate a care plan. Seeing beyond the disease to meet the individual where they are at in their journey. When we reflect on our patients, we do not describe them as the patient with the particular disease but rather the person with the unique story.
“We are inspired by the tenacity these individuals have had in their struggles, overcoming barriers in life, living with regrets but also sharing in their dreams and passions. Each with a story to share and reflecting on their unique lives in ways no one had ever heard.”
13. “Working alongside Andrew has been particularly rewarding for me as well as my team.”
“And watching Andrew work with the patients in this book gave me more perspective on my own approach to doctoring. I have found that I no longer treat a disease; I now care for the patient.
“I would like to thank Andrew for giving these individuals a platform to share their life experiences and having the insight into the need for such a book. His strength is the ability to see that special quality in the individual and to ask the hard questions about love and regrets, pain and disease. He has presented us with the challenge to examine our own lives and re-evaluate our priorities in hopes of minimising regrets.”
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