Call me old fashioned

I am writing this whilst recovering from a major operation last week. Thankfully, the operation appears to have been a success and it will not be long before I am back on my feet again. The last week has been quite a roller coaster. Immediately post the operation I was in probably the weakest state in my life and highly dependent on the expertise and care of the wonderful hospital staff around me. With no visitors allowed because of the pandemic, my need to depend on people who did not know me but whose job was to make sure I stayed well, was stark and a powerful reminder to me of the dependency we have on one another as human beings particularly during a crisis.

Prior to the operation I was speaking with my Dad and we had a brief conversation about what it was like to be a parent in Ireland in the seventies and eighties as I was growing up (and oblivious to the stress and strain he and my mum may have been under). He said that it was difficult. They had decided as parents that my mum would stay at home and that he would be the sole earner into the household. Interest rates went as high as 25% and at one point, almost 70% of my Dads wages were given over in tax. The country was effectively bankrupt and unemployment was at a staggeringly high level (close to 20% I believe). Most young people with any kind of skill or education emigrated.

Despite that, we lived in three houses during my childhood. A 3-bedroom semi-detached house in Cabinteely, a 4-bedroom semi-detached house in Malahide and finally a 5-bedroom detached house in Greystones where I spent the bulk of my youth.

When I was growing up I truly felt I was part of a community. I was always learning new things, doing new activities, exploring with others in a safe environment. I was never alone, surrounded by friends and family and there was this always this powerful energy promising possibility and potential around right up to when I reached my twenties.

My parents paid for me to learn the piano, I went to public schools (as did all my siblings), we paid voluntary contributions to the Scouting association every week (nobody was turned away), we joined Eire Óg (Gaelic sporting organisation) for free and learned to play Gaelic football and Hurling. Each summer we took part in the summer project where we played numerous sports with others from the community for free. We were called into lunch and dinner by listening out for my mum roaring our names down the green in front of our house. We always had wonderful simple and wholesome food. We had bikes, skateboards, tennis rackets, footballs etc. and never really wanted for anything. We built our own racing carts, made swings across rivers, built tree houses and forts. Our family had one holiday every year and we visited various parts of Ireland and on a couple of occasions various parts of Brittany in France.

I only really have positive powerful memories of a fun filled varied childhood and was blissfully unaware of how hard it was for my parents during this time. My parents literally ran the tightest ship you could imagine allowing for all these things to happen.

One of my standout memories of my childhood was my Dad inviting me along to help with work he was doing with the St Vincent De Paul. Most Saturday mornings we installed a new cooker or fixed a roof or a leak for some member of our community who was struggling. My Dad never made a fuss about what we were doing. He just brushed it off and would say that everyone needs help every now and again. That simple, anonymous practice of caring has always stayed with me.

The Ireland of today is unrecognisable to the Ireland I grew up in.

 

Over the last few decades we constantly hear that our Gross Domestic Product (GDP) is increasing (essentially the money circulating in our economy), unemployment is coming down, services are improving and so the goal would seem to be to continue on this path.

I am so tired of hearing that GDP growth is a measure of success.

If I am brutally honest, it seems to me that increasing GDP is only really a measure of success for a diminishing number of very wealthy people in any economy that uses it as a measure of success.

There is a long list of differences to the Ireland that young people today are growing up in versus the one I grew up in, that are worth mentioning.

You cannot realistically own a house suitable for a small family without massively putting yourself into debt. House prices are ridiculously inflated when you compare them to the average industrial wage.

You cannot realistically rent a house in an urban area. You have no choice but to share costs. Students and people starting out in their careers are really affected by this. They cannot afford a house and because rents are so high, they cannot save for a house deposit pushing up the demand for rental properties.

In families starting out, both parents must work. Affordable childcare is almost at the levels of a second mortgage.

Every single physical activity a child does is now subject to significant insurance costs.

The public health system is singularly inadequate for the size of our current population and without private health insurance you can get into real trouble if you get ill.

School fees, University fees are all increasing putting more debt on students and families (this is such a bad idea – burdening students with debt when they leave education limits their ability to really find their potential which might involve a period of time where they earn very little).

There is almost no community service that your taxes cover.

You are now taxed on the property you live in despite most people having already paid stamp duty for their home and in an inflated housing market these taxes are always increasing.

Car insurance and registration are one of the highest in the world.

Services like broadband, mobile phone packages TV license fees are sometimes 25% higher than the average in Europe.

Utilities like electricity, gas are higher here than almost anywhere else in Europe (despite us having some of the best renewable resources on the planet)

Our public service wage bill grows every year with what would appear to be guaranteed increments unrelated to performance. Meanwhile in the private sector, many areas have not seen wage increases in a decade. I for one earn substantially less now than I did in 2005.

Suicide (particularly in young men) and homelessness are the worst they have ever been in decades.

Serious crime (particularly related to ‘middle class’ drugs like cocaine and ICE) is a growing and now a significant problem in Ireland.

People literally do not have the time to participate and build social fabric in their communities. Many communities simply become what are known as commuter towns where long commute times mean there is little time for anything else.

So, the question needs to be asked, what are we trying to create?

Does all this growth in GDP and circulating wealth end up being the goal or do we want to create a society that is better than what we had before?

I seriously question that the society we have created over the last few decades is a society that is better than the one I grew up in. I am not trying to glamorise what I had - there were significant problems and issues with Irish Society in the seventies and eighties but I contend that there are significantly more issues with the society we have today.

I want to illustrate the point with two examples.

My core contention in both is that the stress and strain of growing GDP at both a macro and a micro level has made us more selfish (or maybe less outward looking to be more generous in description). This has led us to isolate ourselves from community because we literally do not have the time or resources to do that.

For me, a successful society is founded on an intrinsic sense of collective responsibility. What I mean by this is essentially people looking after one another (not just themselves) when there is a need to do so. Our care for one another really embodies what is beautiful about being human. Our society should be set up to allow this to become manifest in almost every facet of our daily lives.  From the way we raise our children to the way we care for the elderly in the twilight years of their lives. From the way we support our neighbours who get into difficulty to the ways we help those in the developing world. From the way we pull together to champion causes like homelessness and racism to the way we welcome refugees from war torn countries around the globe. The spirit of sharing and caring should embody (and be completely natural and unforced) in everything we do.

Why is this true? It is because it is an absolute guarantee that we all need help in our lives at some point so, in a selfish kind of way, you can think of it as your health protection insurance policy.

There is also a very strong scientific argument around why it is important. If you look at the human brain and how it has evolved over the centuries, we see that the motor cortex (that part of the brain that controls muscles and motor function) has very particular elements to it devoted purely to socialising and face to face communication. Humans have significantly more brain power devoted to things like facial expressions, the use of our tongue and control of our hands compared to other intelligent mammals suggesting that we evolved as social animals working in groups with sophisticated language skills and that these traits define us.

Human beings need to work together to survive. Its built into our biology.

 

I was admitted to hospital last week. At almost the same time my wife’s sister (to whom she is very close) was admitted into an Intensive Care Unit in Nairobi Kenya. She had developed pulmonary Emphysema and Pneumonia and was seriously ill. Right now, public hospitals in Kenya are on strike because of the COVID19 pandemic (healthcare workers can not obtain proper PPE apparently) and so the only option was to put my wife’s sister into an ICU in a private hospital in Nairobi. She has no health care insurance and so the healthcare costs are astronomical by anyone’s standards (about €1000 a day).

Our family has limited funds, but we managed the initial costs. However, it soon became clear that the costs were beyond us. We asked for help. I setup a gofundme campaign and my wife setup a Kenyan based Whatsapp group.

Initially we thought that the gofundme campaign would serve to pay the bulk of the hospital fees and the local based initiative would be for costs like transport, consumables etc.

It has not worked out that way. The response to the local campaign in Kenya from people with a fraction of the income of people in Ireland has been nothing short of extraordinary. Hundreds of people have joined in and are actively drawing others in to help.

Initially this shocked me. Obviously, it is easier to convey the seriousness of the situation to people on the ground in Kenya – its much harder to do that from here in Ireland - but still it has really brought it home to me how hard it is to get people to collectively care about anything in the Ireland of today even when you call out for help. Kenya is approximately ten times less economically successful if you were to use GDP as the measure of success and yet despite that it is a country where people really do look out for one another. Ireland used to be like this but not anymore.

I have amazing friends - caring, compassionate, idealistic and courageous but these days I rely on social networking to keep in contact. There is a terribly false assumption that has people believing that when you post something on social media, everyone you know sees it.  The algorithms that drive what you see have very little to do with what matters to you. They are driven by what matters to the social media platform which is essentially to keep people on the platform as long as possible so the data can reveal how best to sell something to them.

Think about this. We are essentially replacing one of the key safety nets in human behaviour (a close friendship group which is normally cultivated with people meeting up, sharing real experiences, communicating and enjoying one another’s company) with an algorithm driven connection methodology designed to use knowledge about our behaviours to make money.

And the terrible truth is that this insidious effort to undermine our essential communication needs as human beings is going largely un-noticed or challenged in the western world.

Why do I and many others use social media to stay connected to my friends? Its easy, convenient and allows me to convince myself that I am staying in touch with people I care about. The truth is though, that I do it because I do not have the time and energy to do the real social networking. Life has put too many demands on me (and I suspect many others) to engage in the essential activity of building strong social fabric around me.

Interestingly, my wife who is from Kenya actively sustains her real social life. She cannot understand how we (as in Irish Culture) do not put more effort into our communities. Back in Kenya this is just the way it is.

The second example is less personal but probably more contentious. 

Like pretty much everyone in Ireland, the reading of the report into the Mothers and Babies home scandal really upset me. The treatment of the women and children in the homes was utterly appalling and does not reflect any value system I can subscribe too.

The homes were setup to essentially punish unmarried mothers and in a twisted kind of way to provide shelter to unwanted children. State, Church and Society were all complicit and nobody can take the higher ground in this horror story. We all share a collective responsibility to address the grave injustices that occurred in those homes. If there is a redress scheme to be managed that required a tax contribution, it is something I would willingly pay.

These days easy access to abortion sorts the issue out. Abortion has become the global approach to managing the really difficult issue of unwanted pregnancies (80 million abortions a year globally).

Last year Ireland officially recorded 6666 abortions. That is the undergraduate population of Dublin City University in one year. It is highly unlikely those souls will ever have an investigation into their deaths in the near future. Abortion is very much an accepted practice in western society.

Most people know my views on this. This is not the article to go into detail here but it suffices to say that I have never seen, read or heard a credible pro-abortion argument based on science that justifies mainstream abortion. All our understanding of science points in the opposite direction. If we believe it is wrong to kill an innocent human being for the simple reason of being alive then quite simply abortion is gravely wrong.

My personal views on abortion aside, is it beyond us to provide an alternative to unwanted pregnancy? Can we not have State supported facilities (like ‘flying start’ in Wales) where mother and child are supported in numerous ways that make the choice of abortion something truly limited? I am thinking of early learning centres where children are given proper nutrition and health services. Women could safely leave their babies in centres like this and continue studying, working, travelling or whatever activity they felt pregnancy was going to severely impact.

Our adoption facilities are difficult to navigate. Is there work to be done here that can improve that? Could we extend our fostering system to help women through the early challenges of rearing a child so they feel supported in their choice?

An approach like the above would in an odd kind of way provide services that the Mother and Baby centres were supposed to do but never did.

The point is this. I genuinely think the way we have structured our society, which requires inexorable GDP growth, means that our ability to care for one another (especially our children) is severely compromised.

It is ridiculously hard to bring a child into the society we have created and by doing this we open the doors to ‘solutions’ like abortion. The same can be said for assisted suicide. Of course, there are extreme counter examples, but do we really want a society that provides options for euthanasia once you are not a contributor to GDP?

Surely we can put resources into making sure we have the best possible facilities for people nearing the end of their life? Possibly the most stark truth to emerge from the pandemic is just how far away we are from this.

Interestingly communities in Kenya are set up so the elderly are essentially revered as they get older. They become elders in the community that young people can go to for advice. Their life experiences in a sense are treasured and made available to the next generation. It is a beautiful way of supporting your community with everyone participating and is completely at odds with the idea that as you get older you can contribute less.

 If we had the proper systems in place to support children, the elderly the sick and the weak, our society would be a lot fairer and easier to live in.

The simple earlier example of how the community in Kenya rallied to help my sister in law has taught me a few things, the most important being that if the community is strong help is on hand. We really have lost that in Ireland. I am truly sorry to say that because it is something, I assumed was synonymous with being Irish.

So, what do we do? How do we find a way to build a society we can all thrive in and be proud of?

We have a very good tax collection system. I would be happy to pay more tax if policies like the following were being actively pursued:

A policy to dramatically reduce the number of people who are homeless. If homeless figures go up it is a clear alarm signal that our society is not working.

A policy that aims to reduce suicides in Ireland (particularly in young men). We need proper mental health service in Ireland and not be relying on charities. If you see suicides on the rise it is also another clear indicator of something going wrong in society.

Policies that dramatically improve nursing homes and any facility that cares for vulnerable people.

Policies that develop  support facilities and early intervention strategies to help mums and children during the difficult pre school years of child rearing. This could be integrated into a comprehensive pre school support system nationwide.

An option for young people to give one year of their education to serving the most vulnerable in society. This cannot be forced but nothing beats real experience when it comes to developing empathy for people less fortunate than you.

Nationwide initiative where people meet once a week to offer their services to one other in the community in the form of dedicated hours of free time. Service could be anything from plumbing, accountancy, taxis, event organisation, hair dressing etc. In Ireland we used to have something similar called Meitheal.

We need a better functioning health service. The pandemic has really shown up just how unfit for purpose our health system is despite the billions we pour into it. It is simply unacceptable that we have only 250 acute care beds in a country with the population we have. We need a 1000 bed acute care hospital in the middle of the country built by the private sector (the Children’s Hospital debacle has convinced me that there really is nobody competent in the public sector able to decide where and how to build a hospital).

If you are paying a good portion of your salary into the tax system then education and health have to be covered for everyone. Education looks after the young, health looks after the vulnerable and frail.

A policing policy that truly empowers the police to get drugs (particularly hard drugs) out of Ireland. They are the scourge of communities and cause nothing but devastation and despair. I would honestly go so far as to have dedicated prisons for serious drug crime where the regime is extremely difficult and long term (whilst being fair obviously).

And finally a callout for our entrepreneurs in our country. It is incredibly difficult to start a company in Ireland. There is enormous risk aversion and with far too much emphasis on bringing big brand names to Ireland. Yes they provide employment but they are only here as long as the incentives are good. We leave ourselves at their mercy which makes us look foolish when it comes to tax collection and vulnerable to their profit driven whims. Local companies by their very nature build social fabric.

The global pandemic has been hard on just about everyone. We have learned a huge amount about what we need for a functioning society but crucially we have come to understand the importance of human connection. There is a golden, possibly once in a lifetime, opportunity to not rebuild what we had before the pandemic but to build anew based on what we now know.

Were we to think like this, we could start building foundations of a society that is a lot fairer, a lot more compassionate and a lot more sustainable than what we currently have.

Its success would certainly not be measured on how high the GDP growth was in any one year!

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.

****

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