This is a cross-post of an article that I wrote for the Africa edition of ehospice news reflecting on the lessons learnt from Hendri Coetzee’s book ‘Living the best day ever’.
Palliative care, by definition, is both a science and an art form that involves accepting the reality of death. What you have left when you accept this is what the profession calls ‘preserving or improving the quality of life’.
Never before though, have I been challenged to re-examine the concept of ‘quality of life’ than when reading Hendri Coetzee’s book: ‘Living the best day ever’.
Hendri Coetzee was a South African living in Uganda perpetually searching for the best day ever. This search led him to become a legend throughout the extreme sports and exploration world.
In 2004 Hendri led the first ever complete descent of River Nile from source (Lake Victoria) to sea (the Mediterranean). The 4,160 mile trip took four and a half months and crossed two war zones.
Coetzee was also the first person to run the rapids above the Nile’s Murchison Falls, a section of river filled with some of the biggest white water in the world, and holding one of the highest concentrations of crocodiles and hippos.
He would go on to complete this section of river a further seven times and he remains the only person ever to run the section by himself. He also ran large sections of the upper and lower Congo River, walked 1000 miles along the Tanzanian coast and was the first person ever to snowboard the glaciers in the Ruwenzori Mountains.
In short, his résumé was one of the most impressive in the business.
It was not, however, his outlandish adventures that makes Coetzee’s book such a challenge for anyone to read, but his burning passion for life. Deep within all of his adventures was an intertwined journey to accept the fullness of life – to be able to appreciate it to its full. Only by understanding and ultimately accepting one’s death, Coetzee believed, can we truly experience a ‘quality of life’.
Speaking to some, and by no means all, palliative care patients I have come across a stillness – a deeper happiness – that I have rarely seen elsewhere. It is a happiness that comes fundamentally from within, a spiritual or psychological wellbeing.
Does this come from an acceptance of one’s own death?
Early on in the book, when undertaking the Murchison Falls section of white water, Coetzee writes: “In our society we avoid the thought of death as if recognition alone could trigger the event. Thinking about your own death is seen as a sign that mentally, all is not well. Some people live their entire lives with the sole purpose of minimising the chances of it occurring to them, instead of preparing for the inevitable. After avoiding the issue for so long, it is almost soothing to invite death on my terms.”
Reflecting on this, I wonder how many palliative care practitioners spend their professional hours encouraging patients to think about their deaths, to make preparations and to become comfortable with the idea whilst then perpetuating the myth in their own lives that life is infinite?
I only speak for myself when I write that I am too often guilty of this self-delusion.
To live a truly high ‘quality of life’ do we have to be comfortable with the idea of our death? I don’t know.
For Coetzee though, this acceptance was clearly linked to the life he chose to lead. Writing about his desire to keep going on clearly dangerous expeditions he wrote: “Psychoanalysts may diagnose a death wish, but missions like these enhance the appreciation of life. It is no coincidence that death and rebirth are related in all forms of religion and spirituality. When you accept that you are going to die, and it will be sooner than you think, it becomes impossible to merely go through the motions.”
Even the acceptance of my own inevitable death cannot push me to actions that so invite the prospect of death earlier than it otherwise would arrive. There is too much to live for to put my life on the line in search of living just that one day to the extreme – in the search for the best day ever.
That said, it is imperative for the palliative care community to understand the full spectrum of thought that exists out there. Just as there are people who are terrified of the concept of their own passing so there are people like Coetzee that can write the following words:
“Death is coming for us all…the day we will have to face the crossing will come sooner than we think. I hope my day is many many years away, but… I don’t want to make the greatest leap in life in a vague dream. I want to have the chance to look it in the eye, to say: ‘You have had me in your sights all your life, but it’s on my terms that I come.’ Tibetans believe that one can find enlightenment at the moment of your death, as long as you prepared yourself for it during life…I have had the best day ever more times than I remember. So yes, I believe I am ready to die if that is what is needed to live as I want to.”
Hendri Coetzee was pulled from his kayak by a crocodile deep inside the Democratic Republic of the Congo and his body was never recovered.
At the end of his last ever blog entry though, after completing a section of river that many assumed impossible to kayak, he wrote: “We stood precariously on a unknown slope deep in the heart of Africa, for once my mind and heart agreed, I would never live a better day.”
I have no idea if – when it came – Hendri Coetzee was prepared for his death. It is clear though, that he lived life to the full and died in way he had to have expected.
Not many of us can say that and for that alone ‘Living the best day ever’ is worth reading. I think we can all learn something from Hendri Coetzee approach to both life and death.
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Of course there’s a desperate need for us as a society to re-evaluate how we treat those who are different; to think critically about how a dearth of real representations of people with dwarfism – and indeed other disabilities too – in the media perpetuate prejudices and spread stereotypes.
Hynd's Blog 
Reflections on my Mum’s advanced dementia
“Death is coming for us all…the day we will have to face the crossing will come sooner than we think. I hope my day is many many years away, but… I don’t want to make the greatest leap in life in a vague dream. I want to have the chance to look it in the eye, to say: ‘You have had me in your sights all your life, but it’s on my terms that I come.’” Hendri Coetzee – Living the Best Day Ever
Sitting across from each other on slightly uncomfortable wooden chairs in the care home I watch my Mum interact with one of the staff. The young girl lays her hand on my mum’s shoulder, raises the volume of her voice slightly and asks if “everything was alright dear” and if my Mum would “like any help?”.
My mum looks up at her and smiles with wide unfocused eyes. The staff member smiles back, hovers awkwardly for a moment trying to decipherer what this blank stare means before finally she walks over to another resident. As she makes her way over to a lady sat hunched in the corner I look back at my Mum and catch just the faintest flicker of a death stare from behind her eyes. It was an unmistakable reflection of something deep within her that these days only occasionally surfaces. Today this was a split second of a “fuck off am I your dear”.
Of course, I could have imagined it, I could have simply wanted to see a bit of her old self and so read too much into a distant stare. But, in that moment I think I saw my Mum: proud, wanting to help others – not wanting to waste people’s time in being helped, and ultimately using anger as a shield to hide away from all the insecurities and uncertainties of her life.
She focuses her eyes back on me, a second of surprise or alarm gives way to a meandering anecdote about the walk she believes she had taken that morning over Dartmoor. I ask if she saw any deer and she responds that she had, but only in the distance. This follows a second of silence and a drop in her eyebrows before she asks if I was OK to count? I promise her that I was more than happy to count to which she scoffs and says she doubts it. I once again miss the nuance of her reality.
Asking questions of dementia patients often only increases distress and confusion and so I try to steer the conversation back onto safe territory and say it was a beautiful crisp winters day outside. Her eyes look at me. One, two, three. Seconds pass with no response. I try a new path. I tell her that I recently spoke with her nephew, my cousin, and that he is happy and doing well. One, two, three. Eyes wide. No response. I try three of four times more and get little in response.
I decide not to push conversation. I sit with her in the weak winter sun surrounded by the stuffy air of the car home. Silence.
In the silence my mind jumps to memories at random. I think back to my mum cutting all the fire wood for the house by hand insisting that she was perfectly happy with her bow saw and no, she didn’t want me to come around with a chainsaw. I think back to her carrying heavy trestle tables out of the local scout hut as all the other mums stood and watched. I think about her slapping down any idea or suggestion that she might in anyway need any help.
With these thoughts in mind I smile at her thinking that I might get going soon. She doesn’t smile back. The staff member approaches and puts her hand on Mum’s shoulder and, just before Mum smiles up at her, she gives her a split second of that recognisable death state. The staff member either doesn’t notice or chooses not to.
The thing I feel saddest about when I leave is that Mum has so little capacity, so little control. Despite both the care home and my family doing all they can, we are no longer able to play by her rules and there is nothing we, or she, can do about it. She is left to be looked after by others. She is clearly being looked after well but they also clearly miss the very essence of her. I don’t think I am sad that she will pass away in the coming, weeks, months, or possibly years. I am just sad that it must be like this, not on her terms.
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Tagged as Advance dementia, Care home, death, Dementia, dying, Hendri Coetzee, Living the best day ever, Living with