My Song is Love Unknown: What's good about Good Friday?

This is an update of a post from three years ago. Unlike many bloggers, I like to write about a variety of topics which interest me, but in so doing, I am well aware that some will be indifferent or even hostile to some topics. So if you object to religion, stop reading now. However, if you can bear with me, you might just come to see that being religious doesn’t mean you’re opinionated, self-righteous, and in-your-face, or that you necessarily have to believe in implausible miracles.

I don't often write about religion on my blog, and I certainly don’t wish to bore people who are not interested, but if I can’t write about religion at the most important times of the Christian year, when can I? Today, Good Friday, commemorates what was surely one of the most significant events in human history and yet its meaning and significance are increasingly forgotten, at least in our increasingly secular country.

As a Unitarian Christian, the whole business of Jesus’s death and resurrection is complicated for me. Many people now pay little attention to the traditional meaning of Good Friday and Easter, yet nobody can deny that the events of what we call Holy Week are as significant as any in the history of mankind. The fact that many of us are on holiday from work, that we are eating hot cross buns today and chocolate eggs on Sunday is a direct consequence of our commemoration of those events 2000 years ago.

If you are a follower of Jesus Christ, the events of Holy Week and Easter are pretty hard to deal with. The day on which the hero of our belief system was cruelly and violently put to death by a tyrannical occupying power is called, in English at least, “Good”. As if that’s not bad enough, Christians are then supposed to believe that he did it “for their sake” and that he then rose from the dead, thereby defying the one certainty in life: death. According to many, that’s what’s “good” about Good Friday – the idea that Jesus “died to make us good”, to quote C F Alexander’s wonderful hymn, “There is a Green Hill far Away”.

Actually, calling it “Good” is a largely English-speaking oddity. Most other languages have a different term, most commonly some variant on the word “Holy” – in French, for example, it is “Vendredi Saint”. Of the major European languages, only Dutch – which is the living language closest to English in many ways – uses the term “good”: “Goede Vrijdag”. I actually think the German term is pretty apt in terms of telling us what happened: Karfreitag – which means Sorrowful or Suffering Friday.

Whatever you call it, it wasn’t a very good day for Jesus and his followers. They would have taken some convincing, at the end of that terrible day, that what he went through was in any way good. I too struggle to see what’s good about the cruel and horrible death of a patently good man.

As a Unitarian, I certainly don’t accept the idea that we are all inherently sinful and need someone to suffer and die in order to save us. I believe that we human beings are all capable of the most terrible sins, but that’s not the same thing as being sinful, and I certainly believe that our salvation lies in our own hands, not those of an innocent man. So in that sense, there is nothing good about Good Friday for me.

However, I have an aversion to well-meaning attempts to manipulate language to make it match literal truths. After all, Easter is a term derived from the name of a pagan goddess of Spring and fertility, so at one level I’m happy to accept Good Friday as “just a name” for an important day.

Yet the explanation that today is a good day because it recognises the good thing that Jesus did for us is not necessarily the correct explanation for the name of the day. Another very plausible explanation comes from the fact that the words “good” and “God” are often interchangeable in the English language. We need look no further than the word “goodbye”, which means “God with you” (God-by-ye) for proof of that. So if we accept this explanation for the term, “God Friday” is perhaps a little easier to accept.

I certainly prefer this explanation: to call it God’s day is much easier for me to accept, in that my own interpretation of God is that it simply means “good”. My concept of God is not as an omnipotent father-figure and creator who ordains all that is, was and shall be, but rather that “God” means all that is good in the world. After all, it is commonly observed that there is only one letter of difference between God and good, and also only one letter of difference between devil and evil. Etymologists rightly point out that this is probably just a neat coincidence, but it certainly suits me to believe that “God” can simply mean all that is good in the world, while “devil” can simply mean all that is bad in the world.

Jesus’s death, and especially the manner in which he was condemned by a fickle and baying mob, was surely the work of the devil – of evil. No different from many other acts of betrayal and violence throughout history. But it is my view that wherever there is evil, good is never far away, and good always has the last word. Time and again, when something dreadful happens in our world, we are left to despair of humankind’s capacity for evil. Yet invariably, and especially if we look for it, there is a response which is good, although you often have to look harder for it, because the media prefer bad news to good news. There are so many examples, but one that always sticks in my mind is the way in which the family of 12-year-old Tim Parry, the boy killed by an IRA bomb in Warrington in 1993, used his death and that of 3-year-old Johnathan Ball in the same incident as a catalyst to set up a peace foundation, contributing in no small measure to the eventual end of the IRA bombing campaign and the start of the Ulster peace process. I could quote numerous other stories from throughout history to make the same point. Good – or God – had the last word.

So instead of despairing when something dreadful happens in our world, and bemoaning the absence of God at such times, perhaps we should look for the good – the God – which is always there to respond, to comfort and to heal. And in that respect, Good Friday is aptly named, in that it however hard it must have been to believe it at the time, God (or good) was not far away. Good Friday comes just two days before we remember that even if the physical Jesus was put to death, his spirit, his values and his example of how to live a good life continued to shine in an at times dark and evil world, and still do so to this day.

So this Friday is indeed good, if only as a reminder that however evil our world may seem, good, aka God, is never far away. And my chosen title, My Song is Love Unknown, sums up all that the life and death of Jesus means in our sad world: “Love to the loveless shown that they might lovely be” seems a pretty good summary of what he was trying to achieve, and to attempt in our own small way to do likewise is the least we can do to honour his memory.

Reflections of My Life: Growing old with Type One Diabetes

Reflections of My Life. This sounds a bit personal and heavy, but it doesn’t signify any particular change of mind-set.

It’s just that I’ve perhaps had more time for thinking in recent months, and together with a few unrelated events and changes in my life, it’s led to a blog post forming in my mind. As always, I’ve given it a title from a song, and this one is a real favourite of mine. It’s a track by Marmalade, a somewhat under-rated Scottish band who spanned the late 60s into early 70s with a series of songs that saw them grow from beginnings in fairly bland 60s “pop” into a versatile, musically and lyrically literate outfit. This one is a real gem from early 1970, a song as wistfully reflective as the title suggests.

So what’s this post all about? Well, I guess it’s about growing old, and in particular growing old with diabetes. And why now?

Well, I’ve been doing a lot of digging recently.

There’s been a lot of literal digging, as we have just moved into a new home with a very large, undeveloped garden. I’ve been out in all weathers, patiently and methodically creating two long, undulating borders along the sides of what was a rectangular lawn. It’s the sort of task I love. Easily defined, constructive and with a visible and measurable outcome, it gives me fresh air, exercise, stable blood sugar and lots of thinking time. I have also been delighted by the extent to which people on twitter have enjoyed following the progress of my work. Simple pleasures.

My Growing Border

Then there’s been some metaphorical digging as I make similarly slow but equally steady and rewarding progress indoors, uncovering the full extent of my family, past and present. I’ve been building a family tree on Ancestry for several years now, tracing back my own and my wife’s forebears, but a particular meet-up with cousins from two generations on my father’s side has led me to propose and organise a gathering to celebrate the centenary of my paternal grandparents’ wedding, in April 2019. This has re-connected me with 8 first cousins with whom I had been in minimal contact, and to hear about their lives and their families has been a great pleasure and also a reminder that we are all growing older together. I am, with the help of my cousins, planning quite a party.

So I was thinking about all this whilst digging away at my lawn, when at some point in recent days I saw this post from the wonderful @LisWarren, one of the many great friends that I’ve made in recent years though the online diabetes community:

With her 50+ years of living with Type One and tireless advocacy work, Lis is, along with @PeteDaviesType1 and @apatrickmooney a shining reminder to all of us that diabetes is no barrier to a long and healthy life, but she is right to draw attention to the fact that the very success of treatment and care for Type One diabetes since the discovery of insulin therapy in 1924 inevitably leads to there being a growing cohort of older people with Type One. The discredited epithet “juvenile” for Type One still persists enough to sometimes give the impression that it is a young peoples’ condition, which it of course isn’t. And therein lies a challenge for all of us who live with diabetes. We’re very good at self-care, but how good will be at it in old age?

My own “reflections of my life” in recent months inevitably include an awareness of the ageing process, and whilst I am not and never have been, one to dwell on doom and gloom, I nevertheless cannot help but wonder what it will be like to live with Type One at an advanced age.

My own parents both enjoyed good physical health and led active lives well into old age, but if one fear does haunt me it is that of succumbing to the Alzheimer’s Disease which turned my late mother, once a lively, witty and energetic schoolteacher, into first a grotesque caricature of her former self and then an unrecognisable and unrecognising shell of a human being, whose death at 85 in 2013 was a merciful release both for her and her family. I was not a blogger at the time of her decline and death, but it is a story that I may tell on here one day: to end up as utterly helpless and unaware in the final years of life as she did, and to become totally dependent upon others for diabetes management is a very sobering thought for me.

As I wrote in this recent post about technology and diabetes, I accept that I am too old to have any prospect of being cured of Type One, and I also accept that whilst the health of older people is much better than it was even in the recent past, I will over the years that I have left become weaker, frailer, more forgetful, less capable and so more dependent upon others.

But let this not end on a gloomy note. I am very well thank you, busy creating a garden, building a family tree, collecting and posting photos for daft #GBDOC collages and organising events for my family and others. And many of my friends, especially those in the diabetes community, are a lot younger than me. So I am a long way, I hope, from being “put out to grass”.

And at the risk of repeating the conclusion from that recent post, I have great faith in technology to help me both with my life in general and with diabetes management. I feel blessed to be young enough to have embraced the revolutionary changes in ICT that have swept through our lives over the past couple of decades. It is easy to think of smartphone addiction, social media and the like as a young peoples’ thing, but these gadgets and gizmos which we all love so much will be a massive boon in old age that my parents’ generation have in many cases missed out on. I imagine the care homes of the distant future being full of old folk, still sitting around on chairs as they do today, but all clutching a tablet or smartphone and fully engaged with and enjoying stuff like silly videos on You Tube, gifs and viral posts on social media. And hopefully, they will be a lot happier for it. Technology and old age certainly do mix.

For those with diabetes, is it too much to ask that access to technology - pumps, CGMs, closed loops and the like should perhaps be regarded less as “just for younger PWD” and more as a priority for those of more advanced years.

Now, back to the digging….

I Will Survive - but I'd like a bit of help, please.

Cure for Type One Diabetes? “If there’s a cure for this, I don’t want it” sang Diana Ross back in 1976.

Well of course, if someone offered any of us living with Type One Diabetes a cure that was permanent and free from nastier long-term side effects, we’d grab it with both hands. There’s a running joke among people with Type One that a cure is “ten years away” - I remember hearing this when I was diagnosed back in 1997 - and for a while I kidded myself that it might be true. I remember my late mother saying she would gladly use her pension pot to help fund any treatment that would cure me, and whilst I politely thanked her, I soon realised that her life savings were not in any danger.

“Ten years away” isn’t true, never was and possibly never will be. I’m fully reconciled to seeing out my time on this earth in the company of my unwanted friend T1D. I hope I’ve got thirty odd years left, and it would be great to make it to 50 years, especially having been diagnosed as an adult. That’s my life goal, but it will require me to see my 90^th birthday and a little more for that to happen.

But if that sounds negative and defeatist, it isn’t. It’s just realistic, and I have to say that I had a “light bulb moment” after attending the wonderful Type One - Rise of the Machines event in London last Saturday, 24^th February 2018. 

Quick shout out to Partha Kar for making it happen, all the speakers, and Ben Moody and the team at TechUK for hosting. My light bulb moment is nothing particularly new, but rather just a clarity of focus about the way forward for managing Type One. Let me explain:

Rise of the Machines was all about the use of technology in managing - not defeating - Type One Diabetes. It was an inspirational day: we heard from some of the medical technology companies about their work in developing the gadgets and gizmos such as insulin pumps, CGMs and Flash Glucose monitors which have done much to improve the lives of those lucky enough to have access to them, and they deserve our applause and recognition for the work that they have done and continue to do to make our lives better. I am lucky to live in the era in which I do, and in the country in which I do. Then we heard from the big two charities, Diabetes UK and JDRF, who do so much to raise the funds required to fund technical and medical developments.

But we also heard from some of the stars of the world of #WeAreNotWaiting - those highly motivated people with diabetes, or parents of children with diabetes, who have used their skills in ICT, especially coding, to take what the medical technology companies have done and move it onwards in a way and at a speed that could not be achieved in the - rightly - cautious and regulated world of corporate medical technology.

Whilst the work of the #WeAreNotWaiting people on closed loops, artificial pancreases and the like is not for me and unlikely to be (it depends as a starting point on the use of insulin pump therapy, for which I am unlikely to be eligible in the foreseeable future), it shows what can be done and points the way to a longer-term future in which Type One Diabetes will be artificially managed to the extent that it can be a mere inconvenience rather than the full-time occupation that it all too often seems to be.

And therein lies the crux of the matter, and there are encouraging signs everywhere that people with diabetes, healthcare professionals and the scientific research community are starting to recognise it.

Diabetes is a condition, not a disease. Type One will not be “cured” in the foreseeable future. The best hope for those of us living with it is therefore to have access to the best possible assistance in living with it, and for that to happen, technology must increasingly be seen as an essential, rather than some kind of desirable add-on.

A condition not a disease: most diseases require drugs, either to reverse and cure them, or to make them bearable and prolong life. However, a condition, especially one like Type One Diabetes which is not degenerative, requires assistance with self-care to ensure that those living with it can do all that they would do without the condition, and not become a burden on an overstretched healthcare system.

In this sense (and I know that to say so is controversial) Type One Diabetes is perhaps a disability, and people with other disabilities, however minor, benefit from an increasing range of technological solutions to make their lives liveable and as normal as possible. Some examples are so common that they are overlooked: those with less than perfect vision wear glasses; those with tooth damage or decay get fillings and crowns; those with hearing loss use hearing aids; those with minor heart problems use a pacemaker; those who have lost limbs use prosthetics or wheelchairs. The list is endless.

So why the apparent unwillingness to use technology to help those with Type One Diabetes? There is at present great frustration in the Type One community at the postcode lottery of access to FreeStyleLibre flash glucose monitoring, a high-tech but relatively low-cost innovation which allows people with diabetes to carry out the all-important monitoring of their blood sugar levels in a manner which is convenient, non-invasive and infinitely more informative than finger-prick testing. There is suspicion and even hostility towards it from some, even within the healthcare profession, yet people with diabetes and many of those who care for them are overwhelmingly convinced of its short and long term benefits. The CCGs who are resisting accepting it to their approved listings for NHS availability cite its cost, yet appear focused on just the headline up-front cost of around £70 per month. This despite the fact that it is already widely accepted that this cost is broadly comparable to that of an adequate supply of finger prick tests, without even considering the longer-term cost benefits of improved control.

However more significantly, I was struck by the views of a consultant who spoke at the Rise of the Machines event. He pointed out that there are many drugs in very widespread use whose cost is far greater. For example some treatments for Type Two Diabetes (a far more common condition) such as GLP-1 Agonists cost £68 -78 per month. This is a minor cost when compared with other drugs such as Infliximab which is used to treat auto-immune conditions such as Arthritis & Crohn's. Patients typically receive infusions every 8 weeks, costing £1500-2000 dependant on dose.

The consultant who spoke argued that FreeStyleLibre sensors at £70 per patient per month would have been accepted readily and with minimal dissent if it were a drug. The suspicion and even hostility comes from the fact of it being a piece of high-tech kit and as such points to the need for a change of mind-set.

I for one very much hope that we are on the cusp of just such a change. Technology is everywhere, and devices of a level of sophistication that would have been unimaginable even twenty years ago are now part of all that we do. Smartphones and satnavs for example, have taken over how we communicate and travel, yet would have appeared to be expensive luxuries in the recent past.

Those who regulate the access of people with Type One Diabetes need to realise that for most of us, we need gadgets as well as drugs. The “drug” for Type One is well-established, fully effective and aside from minor potential developments such as smart insulin, what we use today is fine. The unusual, arguably unique, thing about Type One is that a highly effective drug - insulin - keeps us alive yet threatens our day-to-day well-being 24 hours a day, every day. We survive and flourish best when helped by machines which can help us to monitor and react to the insulin which keeps us alive.

With the help of technology and machines, accessible to the many and not just the few, there is every reason for me to believe not only that with Diabetes I Will Survive, but that I and my many friends with Type One will live long and prosper. And we'll cost the NHS a whole lot less in the long run.

Deal??