Dignity in Living and Dying

 

The first time I saw somebody die was in 1995 when I was a volunteer in Kalighat, Mother Therese’s ‘House for the Dying’ in Calcutta. If I am honest, my motivation for going there was far from noble. I was in my twenties and I wanted to be able to say I had spent time in Kalighat so I could ‘tick it off’ as a life experience.  Not the greatest of reasons to serve some of the poorest people on the planet.

With that said, it suffices to say, that my time there remains one of the most powerful humbling experiences of my life.

The people who ended up in Kalighat were literally picked up off the streets as they were dying. The amazing Sisters of Charity would be alerted, through the community network, to someone poor and gravely ill and arrangements would be made to bring the person to the house where they would be cared for till they died.

Without Kalighat these poor people would die anonymously on the streets and would literally be picked up by refuse trucks and disposed of in dumps.

There were trained nurses in Kalighat, who would administer pain relief medication, setup hydration drips and would dress any wounds that needed tending. Our job as volunteers was the most basic form of palliative care. We would make sure the person was comfortable and cared for and crucially not alone when they passed away. One of the most important parts of the job was to hold a person’s hand when they were in the final stages of life. We were asked to do simple things like stroke their hair, whisper to them gently and offer our presence in a loving way so that the last memory they would have of life was one of love.

One of the most powerful memories I have of my short time in Kalighat was that there was an abundance of happiness in the place. Contrary to what you might think, the house was full of joy. There were lots of smiles and laughter and it was a place of friendliness and openness – a place where you could be totally honest and free. You left your ego at the door of Kalighat.

I had one truly extraordinary experience there, where I spent an extended period of time with a dying man who was holding on to life so that his wife could visit him before he died. The problem was nobody knew where his wife was, and we were in Calcutta, a vast city with an unofficial population at the time of over 20 million people.

I wrote a long story about the experience many years ago but the amazing outcome of the story was that the man and his wife did get re-united and they both walked out of Kalighat hand in hand – the man having completely recovered from his illness. I can’t explain what happened except to say that I believe I was present when a miracle took place.

I am glad I wrote it all down at the time as I can only now remember elements of what happened. What I do remember clearly was the powerful intimate connection with the man over the course of many hours even though we did not speak the same language (he spoke Hindi).  Through pictures and gestures we connected our disparate lives and joined one another for a short period of time on the journey of life. It was an incredible journey where I found myself crying earnestly and unashamedly at the plight of my fellow pilgrim.

What did I learn from all of this?

Life is precious. In many ways it’s all we have whether we believe in an afterlife or not. Death is very final. There is no going back. For now, our brief period on the planet is precious and our role in the tapestry of life will never be repeated. Its unique to every person alive.

Life is a mystery – even though our scientific understanding has advanced enormously in my lifetime, there is a huge amount that remains inaccessible to us.  We still have no explanation for example, for the emergence of consciousness after a few years of being in the world - that part of us that truly defines us. It remains an elusive mystery.

Life is full of goodness and good people. We are living in very trying times. It is getting harder and harder to actually identify what the essence of life is as we are swamped with the daily needs of how to survive in the societies we have created. Good people and good acts are being drowned out by the noise and demands of consumerism, information overload, economic growth imperatives and the need to manage burgeoning debt in every facet of life.

Those simple moments like being present with somebody as they passed away, slowed everything down, took away all the angst of trying to survive daily life and allowed the simple act of being a loving presence in somebody’s life to materialise.

Life is full of suffering– its unavoidable – but the fact that we do not want people to suffer is fundamental to our humanity. This is a wonderful attribute of being human but it is so easily abused. For me there are too many examples of people using extreme cases of need (appealing to our sense of compassion) to justify laws and interventions that are truly awful. Abortion being the most obvious example. Euthanasia is next.

The connections we make through life are so important particularly as we get closer to death. There are people who love us unconditionally and that unconditional love is honoured by us being alive and present to it.

And finally death is not separate from life. It is a fundamental part of our journey. It’s something we cannot avoid. We are programmed to die.

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As many of you know, one of my great friends and mentors was John Moriarty (who passed away in June 2007). Although I knew John for over 5 years, the majority of our friendship took place during the last 6 months of his life and I consider it one of the great privileges of my life to have known him particularly in the period just before his death. Conversations with John were never superficial. You could often spend hours in his company, discussing deep and complex ideas and never feel tired or bored. He was an extraordinary story teller and a joy to spend time with.

Two stories come to mind.

John lived in a little Cottage at the base of Mangerton Mountain in Kerry. I would often drive down to his house and spend the day in his company sharing stories with him. We used to have wonderful debates about Science versus Spirituality and I never came away from any discussion with him thinking I had won the argument!

In those last 6 months he was undergoing chemotherapy which was causing his mad shock of wild hair to fall out.

One evening, just as I was leaving, I found him pulling the loose hair from his head and wandering out to his back garden. He explained what he was doing to me:

‘There is a chaffinch in my garden who is building a nest from my discarded hair. The birds are preparing my way to divine ground’

This struck such a deep chord with me. When John did pass away, I arranged to get the nest photographed and it became the cover of a boxset of CD audio recordings of John telling stories in his amazing engaging style.  A simple beautiful technical element to the boxset was that it was designed to look like a block of turf but when you put your warm hands on the box a picture of the nest was revealed. A simple scientific tribute to an extraordinary soul.

I learned many things about death from the great man. One simple insight is that many cultures and societies before ours had a tremendous respect for the journey from life to death (think of the boat journey that the Egyptian Pharaohs had to make) but fundamental to each belief was that the transition from life to death was something truly integrated into our life’s journey and not something separate from it. John used to say that you spend half your life in the ‘getting and gathering’ phase and the other half ‘leaving and letting go’. Death is the ultimate part of this latter phase.

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The second story is sad and quite traumatic.

As John was getting more and more ill his doctors recommended that he undergo a procedure called tumour embolization. Essentially this means that a surgical procedure is performed so that some blood supply to a tumour is cut-off. This slows the growth down and can buy you some time. The short-term downside of the procedure is intense pain in the area of the operation and so pain relief is essential.

John underwent this procedure but there was a serious mix up with his medication and he was left for five hours, post operation, without the correct pain relief medication. He was in agony for those five hours, so much so, that he had to be moved to a quieter area in the hospital because his moans were disturbing the other patients in the public ward.

A few days after the operation, I was allowed to visit him. I was distraught that the health system had let him down so badly. He was not interested in that. He wanted to discuss pain and suffering in a more general sense. I am paraphrasing his thoughts here but here are the salient ideas:

Suffering is an intrinsic element of life. Humans had to become the cruellest of beings to move to the top of the food chain. The cruelty in the Colosseum was so much worse than the cruelty on the Savannah. You only have to look at the last century to understand how far we can take our cruel capabilities.

Human beings without some sense of ‘soul’ will ultimately consume themselves.  A sense of ‘soul’ will always put you on the side of protecting life and all its possibilities (good and bad).

He believed that the next stage of evolution was to accept the animal nature in us and to work hand in hand with a belief in a transcendent love so that we can move forward and beyond our current primitive urges. To move to a place where we had a sense of ‘soul’ or an appreciation of the divine ground we are all a part of.

At the time, I remember wondering if the embolization procedure that John had had was actually worth it.  All it really does is buy you time and puts off the inevitable for a while.

John anticipated this question and so we discussed the issue of Euthanasia (as I said conversations with John were not superficial!).

It suffices to say that he was not a supporter. He did agree that we should make the transition from life to death as comfortable as possible but he truly wanted to pass from this world alert and conscious and with minimum aid to embrace that great unknown. He called it the Final Eureka moment that we will ultimately all face.

John gave me a book by Nietzsche before he died. He scribbled a note for me on the last page which says:

‘A society without a soul will consume itself’

He was firmly of the view that humankind was in a period of evolutionary regression where more primitive (reptilian) urges were coming to the fore. He believed that unless corrected it would be our undoing.

The last time I saw John was when he joined me on a short walk to my car which I had left a good distance from the house that day because of some flooding in the area.  He was very weak but decided to walk part of the way with me.

‘This is as far along the Journey I can be with you’ he said.

We shook hands. I knew that would be the last time we saw one another. His last words to me were a simple acknowledgement of us all needing one another on the journey. He died a week later (I was overseas at the time and missed his funeral).

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I would like to mention two other extraordinary people (Stuart Mangan and Simon Fitzmaurice) who have passed away but came into my life and had a profound impact on me.

I met Stuart Mangan at the beginning of 2009. Stuart was 25 when he suffered a catastrophic spinal injury playing a Rugby match in London on April 5^th 2008. The injury left him completely paralysed from the neck down. I was asked to help him with some voice control technology so that he could have some control over the communication aspects of his life. Over 6 months we worked together on various projects and by the end of that time he had become an extraordinary super user of voice control (a decade before the current voice control systems like Siri, Google and Alexa that we now take for granted). 

The focus of my work with Stuart was purportedly the technology but actually the two of us became good friends very quickly. Pleasantries were quickly dispensed with and we often had deep conversations about life, death and meaning over many hours when we met.

Stuart was seriously injured. Every day his life hung in the balance. He had decided to be ventilated at home so he could live some semblance of a ‘normal’ life. There are always risks doing this. One of the big challenges is that a simple illness (like a flu or a cut) can easily escalate to something very serious because it is not diagnosed early, on account of him not being able to feel anything.

As a result, he was in and out of hospital on numerous occasions and it was immensely challenging on everyone who cared for him. Every aspect of his daily needs had to be catered for by someone else -  from being lifted out of bed, being washed, dressed, fed, etc. All the while, he was only able to stay alive because a machine was pumping air into his lungs.

I only knew Stuart for about 8 months. We had many conversations about his life but I distinctly remember one where I asked him where did he find the strength to keep going?

‘I stay alive for my family’ he replied.

Those words have stayed with me to this day. Stuart died on August 7^th 2009. He was 26 years of age.

Simon Fitzmaurice was my youngest brothers best friend growing up and so he was a regular visitor to our family house in Greystones over the years. He was a wonderful creative fun loving young man.

Simon was diagnosed with motor neuron disease in 2008 and was given a couple of years to live. The health system in Ireland does not ‘encourage’ people to home ventilate so when the disease had progressed to the point that he needed ventilation, he was encouraged to effectively stay in hospital to die.

Simon had other ideas.

Over the next few years, using amazing eye tracking control software, he wrote a wonderful memoir called ‘It’s not Yet Dark’   and directed a full length feature film called ‘My Name is Emily’. A documentary on the making of the film called ‘It’s not Yet Dark’ has featured in multiple film festivals across the world.

Simon was an immense human being. Whether he meant to or not he embodied the idea that life is precious, even when it is tenuous. He literally fought against the prevailing view that he should die in hospital so that he could realise his dreams.

Stuart and Simon are extraordinary examples of the human spirit prevailing in the most difficult of circumstances. They fought for life for the most noble of reasons and left the world a better place because of their endeavours. This does not always have to be the goal. If the only goal is to create as much precious time in the presence of those you love and who in turn love you, surely that is a good starting point for how we decide to support people as they die?

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About a year ago a dear friend of mine lost his mother. I have known this friend for many years and I consider him one of the most amazing people I have ever met. He has met adversity after adversity with incredible courage and fortitude and he constantly humbles me with his ability to see each challenge through.

I spent a good deal of time with him (and his sister) in the hospital where his mum was dying. I watched in awe as the two of them cared for their mother in the most beautiful, gentle way as she slowly passed away. The love and attention they gave her spoke volumes about their lives together and the respect they had for their mum. It struck me, in a similar way to the way it did in Kalighat, that the intimacy of their companionship was a moment of healing and that even the fact that the time of passing away was uncertain, every moment was precious and important. It seems that we instinctively know how to be with someone we love as they pass away.

We have spoken about it numerous times since his mother passed and it is remarkable how the relatively long days in the hospital before she died are never mentioned. Only the moments on that journey, be it the squeezing of a hand, or a wry smile or a potent memory are what we talk about.

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Which brings me to my own family. My Dad was 79 recently. Over the last couple of years, he has needed a couple of operations but generally speaking he is doing well physically. He is finding the current restrictions difficult (though he would never admit that!) especially not being able to see his grandchildren regularly.  I really understand now why grandchildren and grandparents are a wonderful combination.  Children bring so much joy and fun into the world. I love seeing my parents laugh and giggle at the antics of their grandchildren. And children thrive when there is an abundance of love around. Grandparents do that at a whim.

My Dad is a brilliant artist, but since his last operation a few years ago, he has not been very active. I don’t know why, but I suspect he got a bit of a shock from the operation and it might have dented his confidence. Anyway, I decided to try and set him a challenge to address the above and asked him to do a portrait of John Moriarty. Here is the chalk version of the work in progress.

I decided to take a photograph of it because the chalk version is a little bit like a Mandala – it could disappear at any moment! He plans to paint a colour version of John now that he has a ‘sense’ of his face.

This picture tells multiple stories. It is firstly an example of the immense talents of my Dad who is 79 (and in my opinion should never have retired). The story behind actually commissioning the portrait, tells of the concerns and fears of the elders in our community because without a focus, isolation can leave them with very little to look forward too. These are people with vast wisdom and experience dearly loved by their families. The elders of our community who in other cultures (especially in Africa) would be treated with the highest respect. It tells of the power of connection that technology enables these days in a time when human connection is limited.  And in a strange kind of way it has been a great reminder to me to remember John and to try to keep his ideas alive.

I have mentioned it already but life is all we have – or at least it’s all we can be certain about. It’s a mystery which can always surprise us. We know that the most exceptional ideas, inventions, concepts, expressions and insights can come from the human mind at any stage and this is something we should treasure and revere.

Over the last couple of years, we have made collective decisions in Ireland that are fundamentally at odds with that perspective. In my opinion, we have regressed (as John Moriarty would say) to a more individualistic and ultimately selfish view of what our societies laws need to reflect at the expense of the most vulnerable and voiceless in our society.

I think Irish society (and Western Society in general) is losing its sense of ‘soul’. We have convinced ourselves that it is ok to legalise the killing of unborn children for example (with some of the most liberal abortion legislation in the world – we know this because many other ‘liberal oriented’ countries cite it as an example of ‘progress’). We are now about to pass legislation (without a referendum) to legalise Euthanasia in this country under the auspices of allowing people ‘Die with Dignity’. This suggests that you cannot actually die with dignity without a bill like this which is patently untrue.  These laws to ‘better or progress’ society pre-suppose that the frail, the vulnerable, the needy, the voiceless have no role to play in society. In fact, a society that cares for its most vulnerable is a far stronger, far healthier, far more resilient society that is able to withstand all kinds of shocks and adversity. The COVID19 crisis and looming climate crisis are exposing this in earnest.

If we were to commit to proper palliative care, well-funded nursing homes and proper home help for people who want to pass away in their homes then we would have a more compassionate, kinder and ultimately more loving society.  The problem of course, is that facilities and resources like this cost money. And although the argument will be given that assisted suicide is not about money, that is exactly what it will be in time. With our current models of society which focus on individual success, economic growth etc. it makes far more economic sense to have people euthanized once they become a significant financial burden. And whether we like it or not, a general acceptance of euthanasia over time will put pressure on people to ‘choose’ this as an option so they are not a burden to those they leave behind. This is the experience of other countries (like Holland) who have legalised euthanasia.

A society that thinks it’s OK to kill our youngest most vulnerable members and our most frail and needy members who have contributed a lifetime to that society is a cruel and heartless creation and is a blight on our humanity.

 

We really can do better than this. 

GMcD October 2020