Time is running away from me so I won’t manage to say everything I would really want to communicate…
Last Post (Tuesday, December 10, 2024)
In the circumstances, some explanation may be necessary. I have reached the point where the finishing line of the longest, most brutal endurance test of my life is within sight. I have written in the past about how, like everyone who relies on a life-sustaining intervention, I have the gift of the option to withdraw it and make a dignified departure without unnecessary drama. It’s a sensitive topic, and it is probably not useful to expand further in the environment.
The past 5 years or so have been the toughest of my life on many different levels – physical, personal, emotional and organisational. I would never have believed it, but it has taken all this time for me to reach a point where I can genuinely answer the simple question “How good can my life be?”. Sadly, the answer has turned out to be: “not good enough”. Despite my devastating injury, I have been able to enjoy many pleasurable experiences – the company of my wonderful wife and expanding family; the delivery of three grandsons from brilliant daughters in law; the prospect of a life partner for my youngest (occasionally eccentric) son, well equipped for the challenge; brilliant carers and friends, my brother and sister, who have all contributed far too much to do justice here; the outdoors on my own doorstep as well as the joy of the links at Gullane and the accompanying songs of skylarks and geese (depending on the season); good food; Mallorcan sunshine; the changing of the seasons – made so visual by our dedicated gardener; the list goes on and could include so many small things that can be still enjoyed. It’s never been difficult to observe people in far worse situations than my own, despite the challenges. Of course, set against this has been the endurance of, not only the loss of the normal basic dignities of life, but also the physical hurdles that began with navigating the next few minutes (now extended to 24 hours) alongside a battle to create an effective care environment. It’s impossible to describe an experience that can only be appreciated by the individual. The words of Adam Smith in the opening passage to his The Theory of Moral Sentiments, written more than 200 years ago, at least capture the essential idea and resonate for me. If you struggle to understand my mindset, this passage may be helpful:
As we have no immediate experience of what other men feel, we can form no idea of the manner in which they are affected, but by conceiving what we ourselves should feel in the like situation. Though our brother is upon the rack, as long as we ourselves are at our ease, our senses will never inform us of what he suffers. They never did and never can carry us beyond our own person, and it is by the imagination only that we can form any conception of what are his sensations.
On the Care System
Sadly, our care system is broken. Government promises and legislation are not backed by the funding required to support them. Whilst hints and actual privatisation within the NHS attract great attention, the widespread for-profit operation of the care sector is unappreciated (until you fall into its welcoming arms). Being the child of two civil servants, born shortly after the post-war creation of the NHS and some genuine social mobility which they had benefited from, I do retain some faith in the role of the state and the importance of capable public servants operating with integrity. With my economist’s hat on, the care sector looks like a fairly basic utility which would naturally be operated by the state or genuinely competent non-profit organisations. Some hope. Instead, we have for-profit companies extracting monopoly level profit, paying the absolute minimum to frontline staff and delivering the minimum level of service tolerated by regulators (who lack the effective tools to enforce standards).
Surely, we can do better?
On Carers & Nursing Staff & “Self-Directed Support”
It simply is not possible to adequately express the gratitude I feel towards my care staff – both the current team and others who have worked to support me in the past. I have written before about the wonderful nursing and the slow, but generally highly competent workings of the creaking NHS. My own GP and practice have provided fantastic support, far beyond what I might reasonably have expected in the face of the shitstorm thrown at them over the past few years.
I hardly know where to start with my care which has transitioned from a hapless for-profit specialised company to the “Self-Directed Support” system where I am able to operate a budget of my own, despite the somewhat dysfunctional engagement of City of Edinburgh Council. This shift, imposed on me with only a few weeks’ notice, has allowed me to work with an amazing group of young women supported by a professional leadership coach. Where would I be without the foreign-born individuals to support me? It’s a message that so many people find unpalatable, but I would have been lost without people prepared to work, study (often to make new lives the face of real adversity). It’s a reminder of the privilege I have had of living in a democracy. The “price”, in terms of taxation, is trivial alongside the advantages so many of us take for granted. It’s a system massively overdue for root and branch reform. (Oops – another rabbit hole).
I could pay tribute to each of the 50 or so individuals who have contributed to my brilliant care. They make a mockery of national stereotypes (although these usually retain a grain of truth). My crazy (but 100% professional when required) Australian, super–organised Italian, wonderful Greek alongside a brilliant local who may take up a new set of challenges on behalf of my wife. (All incidentally gorgeous young women although this really wasn’t part of the selection criteria. Honest). Working with them has been a marvellous group of Brits, Poles and workers drawn from all over the world including escapees from failing West African nations.
Celestial Hand Luggage
A good friend and guide asked me what “celestial luggage” I might carry:
As you’re travelling Business Class, you have a larger weight allowance for onboard luggage. So you might want to include in your celestial luggage, some or all of the following:
1. Music – no time to list this but I am AndrewJohnHibbert on Spotify.
2. Two books – one fiction, the other non-fiction
A random pick from Patrick O’Brian’s novels; The Blind Watchmaker by Richard Dawkins, written midway between his often inaccessible science and his bonkers rant against creationists and religion in general. I would throw in Isaac Asimov’s essay The Relativity of Wrong.
3. An electronic or digital device of your choice
My vinyl record collection plus a decent system to listen.
4. A snack
A Tony’s chocolate bar
5. A podcast
The haunting first episode of The History of the World Objects David Attenborough and Neil MacGregor discuss one of the first objects created by early humans 1 million years ago.
6. A luxury (in a nod to Desert Island Discs)
Memories of touch with family and so many other people.
7. A food dish (including where it comes from)
Pretty much anything from Jamie Oliver’s first book – Return of the Naked Chef
8. A film or TV series
Volver – A delightful, mildly dark comedy with the wonderful Penelope C. I could easily add pretty much anything with Daniel Day Lewis.
Goodbye.
So long, and thanks for all the fish, dear friend. All our love.