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January 2023 – A Personal Reflection

The last time I wrote a blog and shared with others, the response or level of response surprised me. I never thought I could write in a way that entertained. At the time I was walking, “One Man and his Dog” around the 500sq miles of the patch I overwatched in terms of end of life care. Linking the retail shops with the message your community is important to us. I never thought then that I would be on this journey, but fate has a deep sense of humour.

Do you believe in serendipity? That you meet people or, events dictate a certain decision directing you along a certain path; or you meet someone in Bath Abbey, someone for whom you have a deep respect for and the chapter from which he is reading from – pokes you in the eye…there are to many coincidences not least from the words of Matthew chapter 25. I have a faith, but it’s a faith, nothing special except when it strikes it strikes. 

I was born in Accra- Ghana. Local Chiefs jumped with delight when goggle informed them that the 6th October 1958 was a Monday – meaning that my Ghanian name is Kojo. 

Death is a subject that some are comfortable to talking about, others less so, some not at all. Yet we all talk about birth. Both happen, both bring a definitive event. One we prepare for, even down to the colour of the room, the other as definitive becomes confiscated, we become discombobulated – my favourite word. Instead of order there is chaos.

Last week myself and fellow members of a Welsh Choir – unlike any Welsh choir you have heard before, reunited. We were formed by an amazing man and by an even more amazing family. A family we only met last week. He knew he was dying, just not when. But he lived life and he and his family wanted to live with him and by him for every mile that they could – a mile filled with laughter and love. So we all sang and drank beer. Talked to him about whether he wanted help finishing his sentence, or did we wait…and sometime we waited..he would laugh. The songs were/are vaguely Welsh and cover time and genres. We had fun and friendships were formed.

COVID intervened as it did in so many lives. It did not take this amazing individual; it just removed the choir. Online singing and drinking from your own bottle is not the same as a cold chapel, a kitty and a scrabble for the jug,  Last week we reformed to celebrate a life. We sang. It was a wonderful celebration. I have never seen and I have seen a lot of death, such courage, beauty, pride or laughter. You can meet death with all its pain and harshness in a positive way. I looked around and hope that if my death is only half as good, it won’t be bad at all. We are reforming, a delight. There will be much laughter.

Serendipity – COMPASS-Ghana was formed. We launched on the 19th of December. The journey from launch to official recognition was harder than I could have ever imagined. At times because of mindset, at times because less haste more speed and at times a fear of Africa by public bodies from Charity Commission to the banks. All in turn eventually helped as did some amazing people and other charities. Whose kindness and generous nature will not be forgotten.

Imagine if you will, that you are 32 years of age, three children, the eldest is 12. Three years ago you have pain and a small lump in your stomach. You say nothing because you have a family and you are the main income provider. If you don’t work, you don’t eat. In real time you are lying in a hospital bed. A number at the end of an iron bed, angled at 45% from the wall as they need to maximise the space available for other patients. There is no pain relief, you cant afford it. You reflect that over the three years. Your husband left you because of the “smell”, the family business – selling vegetables by the road side disown you because you are turning customers away. But still wrapping your stomach tightly in whatever you have, you work, selling water dodging the cars as no work means no food. 

You look up from your bed. Beautiful eyes, no anguish, no complaint despite the pain. Compassionate nurses staring down, asking “even only” …. three years ago. Even only is for those with money. Death is a welcome relief. The children someone else’s problem.  The contrast between the choir and the iron bed, is beyond description.

A Lancet Commission has been working on an international study entitled, “The value of Death”. I have not come across it before but have now engaged with and will be interested to learn more.  People have asked why would any developing nation be interested in investing in a health programme around death, when caring for the new born and the living is so difficult. I will read with interest to see how it balances the psychological with the economical, irrelevant treatments versus compassion, ownership and dignity against ignorance and denial.

Maybe its because we do not talk about death. We invest in birth. We don’t prepare for the impact and cost of death. Invest is emotional, social, economic, personal, family, the now and the future. 

Goal Three of the UN Sustainable Development Goals focuses on health including palliative care as a human right. Corporates and nations talk about Sustainability Development Goals, I wonder how many of them really understand what that actually means, or is it a line in their annual reports and a agenda item at their shareholder meeting, a diversified investment in a pension fund. 

I hope the Value of Death research actually focuses on the difference between a good death and a bad death. That words like added value and opportunity cost and bottom line are interchanged as freely. Because they are very relevant in whatever jargon we exchange. 

So COMPASS-Ghana is on a mission to encourage these conversations to engage with all faiths and none. To share the fact that we all die – some younger than others. That often it is not fair or just, beyond comprehension.  But if we can and we will, help address attitudes, communities, families and carers and have that difficult timely discussion – thereby allowing care and support to be given in a timely manner, when it matters most, maybe we will understand why I found last week was so powerful and inspirational.