Wednesday, 5 December 2018

Little Saint Nick: how Christmas got its Santa

Tomorrow (6th December) is the feast of St Nicholas - or Little Saint Nick as the Beach Boys referred to him in their 1973 festive offering. I wonder how many readers didn’t know that, or had forgotten. It's a festival that, like many, appeals to me I love special days and seasons. Every month has its particular feel; I enjoy each of the four seasons for their own atmosphere, and above all for the contrast between them.

I take childlike pleasure in the big festivals - family birthdays, Christmas, Easter, Shrove Tuesday, Halloween - as well as many forgotten, neglected or less universally observed days like Epiphany and Candlemas. Follow the links from those words to read my previous posts about the latter two if you haven’t seen them. Moreover, in my long career as a schoolteacher, I enjoyed the traditional landmark events of the academic year like start of term, end of term, Sports Day, Speech Day, Leavers’ Day etc.
Much of our day-to-day home and working life is by necessity routine and repetitive, so days which feel a bit different help to punctuate the year and to give us something to anticipate with excitement then look back on with warmth and affection.
These days, the retail and hospitality industry tries hard to part us from our money by promoting special days like Valentine’s Day, St Patrick’s Day, Mother’s Day and Father’s Day as occasions for buying cards, gifts and enjoying some special food and drink. Some decry the over-commercialisation of festivals, but I have no problem with it: good luck to hard-pressed retailers or pubs trying to get us to mark an occasion with a card, a gift or a drink.
I also find it interesting that as a society, we seem to crave collective events and enjoy celebrating them: the unexpected and refreshing success of the England football team in the World Cup in Russia palpably raised the spirits of a divided nation for a few heady weeks last summer, and the day of the Semi-Final, an ordinary Wednesday, felt like a public holiday, with beer and burger sales booming as millions with only a passing interest in football used the occasion to go on a night out or invite friends round for a party. Likewise, the wedding of Prince Harry and Meghan Markle in May proved to be a collective celebration in the early summer sunshine, with the kill-joy republicans suddenly going rather quiet as the nation rejoiced in the happiness of a personable couple with a happy knack of seeming connected to ordinary folk yet retaining the dignity and mystique of monarchy.
Yet we in the UK are not very well off for festivals. Despite attempts by some, we English still seem embarrassed by St George’s Day, tainted as it is by the impression that it somehow the province of the Brexiteer generation. I remain very uneasy about it and therefore indifferent to it, not least because the real St George (ethnically Greek by most accounts) had so little connection with our country. The Scots, the Irish, the Welsh, the French, the Americans and many others have no such problem with their own national day.
And unlike our European neighbours, we don’t seem to have been very good at appropriating religious festivals, secularising them and enjoying them, even without any of the belief. The French enjoy public holidays on Catholic feast days like All Saints, Ascension and Pentecost, despite living in a country where religion is constitutionally excluded from public life. A case of not having your cake yet still eating it!
And what about Harvest Festival? Here, it’s marked in churches and primary schools, but nowhere else. But the Americans have combined the notion of giving thanks for food and drink with gratitude for the founding fathers of their nation to create Thanksgiving, a celebration of family life, and which helps keep Christmas where it belongs in December.
At the time of writing, we have reached the time of year when we are being told “it’s Christmas” by everyone from the BBC to Noddy Holder, in a manner which is quite fun but risks having us fed up with Christmas three weeks before the day. Which is where St Nicholas - aka Santa Claus - should be able to help! St Nicholas Day presents a golden opportunity, taken by people in many other countries, to enjoy a little celebration ahead of Christmas.
Having lived in Eastern France for a year in my early 20s, I have ever since celebrated St. Nicholas Day on December 6th. When our children were little, we told them to leave a pair of shoes by the chimney, and in the morning it was filled with a Lindt chocolate Santa or some such. Just a little treat, but a nice way of teaching them the origin of Santa, and a little landmark on the way to Christmas. This custom is widely observed in some cultures.
So who was St. Nicholas?  Many people just know him as Santa Claus. While the modern figure of Santa derives from St. Nick, the real man behind the fictitious Santa was St. Nicholas of Myra. Born in 280 A.D. in Asia Minor, he lost his parents at an early age, but leaving him great wealth when they died. He was known for giving anonymous gifts to help those in need and was eventually made a bishop. He died on December 6th; thus this day is now St. Nicholas Day. He was apparently a generous and kind man, so the association with gift-giving seems obvious. The history of leaving shoes or stockings out for St. Nicholas derives from the story of his leaving small bags of gold for a man and his three daughters. In those days, women had to bring a dowry to a marriage in order to find a good husband. St. Nick heard of a man who had three daughters but could not afford the dowry. Without it, the daughters would most likely enter a life of prostitution instead of being able to marry. According to legend, St. Nick threw three bags of gold through their window at night, saving them from a life at a brothel and creating his reputation as the patron of gift giving.
The feast of St. Nicholas is celebrated around the world in various cultures. In Greece (as well as Albania, Serbia, and Bulgaria), St. Nicholas is celebrated on the eve of his feast day, December 5th. This day is known as Shen’Kolli i Dimnit (Saint Nicholas of Winter). In these cultures, this day is one of fasting. Most people abstain from meat or fast completely or prepare a feast to eat just after midnight.

In Belgium, the Netherlands and parts of eastern France, children leave their shoes or boots in front of the fireplace for St. Nicholas on the evening of December 5th. Often, they include a carrot or a treat for his horses, as legend has it that he arrived with his horses via sleigh or steamboat in these areas. (a tradition which has transferred into the “sherry and mince pie for Santa, carrot for Rudolph idea for Christmas Eve). 
St. Nicholas is said to arrive on December 6th and give children small gifts and chocolates. In the weeks leading up to this day, parents and grandparents tell stories of the legend, including a disturbing but popular addition: the story goes that three children wandered away and got lost, and a butcher lured them into his shop where he killed them and salted them away in a large tub. According to legend, St. Nicholas revived the boys and brought them home to their families. This story earned him his reputation as protector of children in France. The butcher (known as “Père Fouettard,” meaning “Father Whipper”) is imagined to follow St. Nicholas in penance and leave lumps of coal or even whips misbehaving children. In France, statues and paintings often portray this event, showing the saint with children in a barrel.
In Germany and Austria (and some other countries in this region), children leave out a boot for St. Nicholas and receive small toys, coins, or sweets. In these areas, St. Nicholas is commonly depicted as a bishop and is often portrayed on a horse. Like in the French story, a sinister companion accompanies him, in this case the even more terrifying demon-like Krampus. This beast is thought to punish children who misbehave and to capture particularly naughty children in his sack and carry them away to his lair. The Krampus has roots in Germanic folklore and its influence has spread to Austria, southern Bavaria, South Tyrol, northern Friuli, Hungary, Slovenia, the Czech Republic, the Slovak Republic, and Croatia.

So St Nicholas is a well-known legendary figure in many countries, and the connections to Santa Claus - gift giving, naughty or nice etc. – are clear, although the timing of his festival is coincidentally near Christmas, rather than because of the Santa connection.
However, the Christmas connections present us with a nice “extra” feast to help us get through the long, excited wait for Christmas. So put your shoes out and see what Little Saint Nick puts in them!

Friday, 30 November 2018

Autumn Almanac: The November #HappyDiabeticChallenge

The #HappyDiabeticChallenge which many have been following and contributing to on Twitter over the month of November, has proved to be enjoyable and interesting. I am pleased that I managed to post on every one of the 30 days, and I found it interesting to be made to reflect on these themes about diabetes. It seems a shame that they just drift away on a Twitter timeline, so I decided to curate my 30 posts into a blog post. I hope readers will enjoy seeing it all in one place, with selected illustrations and links. 

Of course, all my blog posts need a song title, so I chose a 60s classic from the Kinks to reflect the November theme and the idea of daily posts: Autumn Almanac. Click on the title and enjoy it while you read on...

So here it is - my #HappyDiabeticChallenge for November 2018:

Day 1 - Introduce Yourself: I'm Adrian, #T1D for the past 21 of my 61 years. Retired teacher, married with 3 adult children. Lover of gardens, cats, football, music, conversation and silver linings: diabetes has been a curse but also a source of new friendships & opportunities.

Day 2 - Type of Diabetes: I'm Type 1, initially misdiagnosed Type 2 at the age of 40 back when adult onset Type 1 was thought to be rare.

Day 3 - Pens, Pump or MDI: I'm unequivocally MDI 

Day 4 – Diabuddies: My definition of diabuddy is "Anyone who is, or who supports, a person with diabetes" And they bring a wonderful silver lining to the cloud of diabetes. I count several diabuddies among my very closest friends. You know who you are.

Day 5: Diabetes and Style: Hmmm. Not sure what that means. "Style" is not a word commonly associated with me. But I do think my @FreeStyleDiabet reader has added style, thanks to my #DeutscheDiabuddy @PEP_ME_UP

Day 6 - Biggest supporter: I wouldn't want to single out any of my #diabuddies who are such great supporters, so I'll say it's Mrs L. She's been with me for 19 years without D & 21 years & counting with. Always puts up with my "carry on regardless" attitude

Day 7 - The Bright Side: Two slides from my talk at #TADTalk2017 - "12 good things about diabetes" Tongue in cheek (so please don't get cross), but I hope it strikes a chord with some. It's a serious & exhausting condition, but there are positives.

Day 8 - Fave Diabetes Accessory: Well, it wouldn't be me if I didn't say my @FreeStyleDiabet, especially on a day with NHS access once again in the news. But my #JellyBabies box is also always with me.

Day 9 - Blood Sugar Roll Call: “Here Miss” 6.8 at 08:38am

Day 10 - Tattoos & diabetes: I don't have any tattoos so (with permission) here's a pic of my favourite, on the arm of my diabestie @ellierosehuckle. A #hummingbird, a thing of beauty with an apt & subtle nod to diabetes, evoking the role of balance & sugar

Day 11 - Low Carb Snacks: The words "low carb" seldom cross my lips and certainly never precede the word "snack". Crisps all the way for me.

Day 12 - Lancet Change Monday: I think I was cleaning my hens' teeth last time that happened. #gbdoc

Day 13 - Diabetes & Mental Health: I am VERY aware of my own good fortune. Meeting many fellow #pwd has brought home to me the struggles that so many others living with diabetes experience. I salute their honesty & resilience. It's a tough condition.

Day 14 - #WorldDiabetesDay: A perfect opportunity amidst all the excitement of this day to acknowledge & thank all the health care professionals, charities and advocates who do so much to help & support those living with all types of #diabetes

Day 15 - Diabetic cost of living: well I hope mine may be about to fall by £100 pm with yesterday's #Libre news. A timely reminder that, despite the embarrassing political chaos unfolding before our very eyes, we are luckier than many. #Insulin4all

Day 16 - My motivation? Remaining positive by trying to do the right thing & helping where I can.

Day 17 - Blood: Lick or Wipe. Fortunately a less common issue thanks to @parthaskar @cahmn @DiabetesUK @JDRFUK et al, but I'm 100% lick, then try to guess BG from the sweetness of taste. I used to be pretty good at it. Is that weird #gbdoc?

Day 18 - Society & Diabetes: you don't have to look far on SocMed to see the cruel or plain daft stuff that's said about diabetes. In real life, I tend to encounter just embarrassed ignorance tinged with sympathy. Like from that radio interview with the PM on LBC.

Day 19 - Diabetes Essentials: In reality, insulin is the only true essential (ask @PeteDaviesType1 for perspective on d-care from 50+ yrs ago) But accurate, frequent monitoring is essential in the context of a full & active life

Day 20 - Where are you from? Born & raised in Bolton, Lancs., of Londoner parents; lived short but significant parts of my life in Oxford, France & Liverpool; then past 32 years in rural Fylde, Lancs. All relevant & influential on my thinking & outlook.

Day 21 - Exercise & Diabetes: I'm by no means an active sportsman these days, but I keep active and I find activity, or lack of it, are VERY influential in trying to maintain reasonably steady BG levels.

Day 22 - What are you thankful for? The #NHS; supportive & loving family; good health other than #T1D; an instinctively positive mindset; not having #T1D during childhood & youth; and above all, the lovely friendships & opportunities arising from #gbdoc

Day 23 - Blue Friday. As opposed to some other colour of Friday which parts fools from their money. Bit stuck on this one.
How about a Blue Playlist? Click on the link and enjoy.

Day 24 - Fave Diabetic Book? I haven't read any book about diabetes since reading this after diagnosis in 1997. I've still got the book - it looks rather quaint these days.

Day 25 - Diabetic hero/heroine: Where to start? Banting & every researcher working on meds & tech; Docs & DSNs who care for & support us; diabetes charities; & #diabuddies who do their thing with practical/emotional support, techie expertise or humour.

Day 26 - Advice for Newbies: Difficult: there's rather too much advice out there! Perhaps best to say there's no "right" or "wrong" way to do diabetes. Take time to watch, listen to & observe others. Then choose wisely & never claim you've cracked it.

Day 27 - Fave Testing Finger: Outside of little finger. Why? Least used for other tasks I guess. Not that I do many fingerpricks these days thanks to @FreeStyleDiabet

Day 28 - Diabetes & Technology: I've had no cause nor wish to embrace pump technology, having found MDI perfectly adequate for my needs & lifestyle. I am, however, fully convinced of the huge benefits to all #PWD (inc #T2D) of some form of continuous monitor.

Day 29 - Goals: to live out a long & contented life free from complications. For others: the same, but with the hope for younger #pwd that innovations in medication & technology can minimise or even eliminate the burden of diabetes.

Day 30 - Beyond Diabetes: A great one to finish the month. I always look beyond diabetes in myself & others. In my friendships with #diabuddies, I always aim to keep diabetes in its place: a very deep & significant bond, but beyond diabetes is the person.

Friday, 9 November 2018

Stop Me (If you've heard it all before)

Stop Me (If you've heard it all before) This is a re-edit and repeat of a post I did back in March, but the growing frustration felt by me and others, both patients and healthcare professionals, about the postcode lottery of access to flash glucose monitoring leads me to repeat myself. My habit of finding a song title for all posts led me to a lesser known song from 1976 by a somewhat under-rated artist, in my opinion one of the finest and most expressively soulful voices - Billy Ocean. Just listen to the song by clicking the link if you're already bored, or listen and read on...

Yes, you have heard it all before, but I and many others won't shut up until fairness and common sense prevail.

Diabetes is a condition, not a disease. Type One may one day be “cured”, but not in the foreseeable future in a manner which is likely to be available to people my age and considerably younger. Those of us already living with Type One Diabetes should accept that we are likely to see out our days with our unwanted friend T1D; a cure is a desirable and achievable aim, but for those yet to be diagnosed in my view.

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. 

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 which, if well managed, 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 as much as a disease, 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, or who are paying lip service but imposing prohibitive criteria, 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 diabetes consultant who spoke at the Rise of the Machines event in February. 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 to therapies for 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. And we are required to self-administer and regulate the effects of this potentially lethal drug without medical supervision for 99% of our time. 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.


Wednesday, 17 October 2018

Please Don't Let Me Be Misunderstood: keeping it simple

I’m just a soul whose intentions are good: so I want to start this post with a heartfelt and sincere disclaimer: this post is NOT having a dig at any group or individual, although I would fully understand if anyone felt that way.

I don’t do tribalism, and I think it is one of the saddest aspects of the contemporary world, not least here in the UK, that we seem to have become increasingly polarised and tribal. I feel very strongly about the political issues with which our country is struggling right now (autumn 2018), but I recognise and understand that others feel equally strongly the other way. And I still feel that in almost any situation, what unites is stronger than what divides, especially if you take the time to sit down, listen and empathise.

Such is the situation with diabetes. There are times when attitudes to diabetes can seem very “tribal”, and in the years in which I have connected with other people with diabetes online, I have seen many instances where there are clear divisions in how people feel about their condition and deal with it. Such divisions are often implicit and overlooked, but on occasions they come to the surface and result in the same sort of hostility and tribalism that afflicts politics, religion, sport, fashion - everything, in fact.

So why the disclaimer and long preamble? Well it’s because this post seeks to speak up for those living with diabetes who choose, or indeed are compelled by circumstances, to manage their condition without any technology beyond insulin pens and a device with which to monitor their blood glucose level. People for whom an insulin pump, let alone one combined with a DIY application to create some sort of artificial pancreas, is either an unreachable dream or simply something they don’t want or need.

I am, with one important exception (more of that later), one such person: I read the admirably enthusiastic and learned tweets and posts about diabetes tech with a paradoxical mixture of fascination and indifference. I am fascinated by what can be done, by what others have achieved through their own enthusiasm and expertise, yet not interested in embracing it for myself. I am on multiple daily insulin injections, always have been, and whilst I would “never say never”, it is hard to envisage a situation in which I would ever be offered, let alone accept, an insulin pump.

My diabetes story is largely one of being “perfectly well, thank you” - to the extent that for the first fifteen years or so of living with diabetes, I largely downplayed it and did little to connect with the world of diabetes beyond my own immediate needs. However, once I started to talk to and meet with others living with diabetes, my eyes were opened to how things could perhaps be different, and it suddenly seemed to me as if everybody else was either on a pump or trying to get one. Having become friends, online and real life, with other Type Ones from all over the UK, Europe and indeed the world, I have at times felt quite the dia-luddite in a group of pumpers, watching in awe as my friends discreetly tweak controls, check numbers and change cannulas. Some of the conversations I see or hear leave my head spinning, and when I recently saw the fabulously comprehensive online dictionary of diabetes technology, I realised just how little of it is of any relevance or even interest to me.

But therein lies the reason for my writing this post: I sometimes feel that the very fact that there is so much to discuss and enthuse about in the world of pumps, CGMs, looping and APS means that those of us who are happy and well with injections just sit quietly in the corner of the dia-room feeling left out, stupid, or both. We even feel perhaps a little guilty that we can’t be bothered (for that is in many ways how I feel) with anything more than a couple of pens, a monitoring device and a basic knowledge of how food and exercise affect insulin requirement.

So what is the exception to which I referred earlier? Well of course, it’s my enthusiasm for something that can tell me more than a snapshot of my blood glucose level, obtained at the cost of some pain and inconvenience. And for me, that is, of course, the FreeStyle Libre flash glucose monitoring system.

I have said this in a previous post, but I well remember at the first real-world meet-up of people with diabetes (#PWDC15) when Lis Warren, a veteran of 50 years’ experience of living with Type One, told a group of us that continuous glucose monitoring had been the biggest single leap forward in managing her condition. She said that CGM was the one thing that she would have been prepared to “mortgage her house” to get her hands on. Now a lot has changed since 2015, most notably with the success of Abbott’s flash monitoring device leading to its admission to the NHS tariff, but I think that there is an important point to be made here, particularly since my own enthusiasm for Libre might seem to be at odds with a post which appears to eschew diabetes technology.

My point is this: there are many who have criticised the Libre and questioned its admission to the NHS tariff, citing inaccuracy compared to “true” CGM, and its lack of alarms (which will to an extent be addressed by the forthcoming Libre 2), but to me, this is precisely the point. FreeStyle Libre is a good fit for my  ”keep it simple” approach to diabetes management. Yes, it is indeed a relatively low-tech piece of tech, with self-evident limitations, and that is why it has been adopted, relatively quickly, by our cash-strapped NHS. I can’t afford a “true” CGM, and neither can the NHS.

So what am I saying? Well I guess it’s me being my usual equivocal self. I want to speak up for those who manage diabetes the “old fashioned” way, using injections, and in the UK at least that is still the vast majority of Type Ones. Let's not forget that, particularly as the online world of #GBDOC might suggest otherwise. However, I also want to stress that even for those of us who embrace a low-tech approach, there is room and need for a little technology in our lives. But not so much that it takes over our lives.  In the end, I’m really not very interested in diabetes.

There, I’ve said it: but please, Don’t Let Me Be Misunderstood. There should be room for technophiles as well as technophobes: pumpers, loopers, prickers, injectors and even flashers (!)  have their place in the world of diabetes management, and those who can afford the cost and time have a right to choose that way for themselves or indeed for their children. But those who prefer to keep it simple have a right not to feel left out or guilty.

We all have our own way of dealing with this complex and demanding condition.

Monday, 1 October 2018

Tous les Visages de l'amour: a tribute to Charles Aznavour

La mort de Charles Aznavour, c'est vraiment la fin d'une époque.  Tristement sous-estimé dans le monde anglophone, ce franco-arménien est pour moi un véritable génie. Quand j'avais seize ans, mon prof de français à essayé de convaincre sa classe qu'Aznavour et ces chansons méritaient notre attention. Nous, on ne le croyait pas. On préférait le rock. Quarante ans plus tard, j'avais changé d'avis, et en tant que prof moi-même, j'ai appris sa musique et ses paroles à mes classes de terminale. Heureusement, mes élèves, surtout les filles, étaient persuadées. J'espère qu'il y a au moins quelques jeunes anglaises en deuil ce soir!

Pour moi, ce qui rend Aznavour spécial, c'est que ses paroles méritent une analyse critique autant que sa musique. Les paroles nous parlent des émotions que nous connaissons tous.

Et en particulier, il nous a parlé de l'amour et du passage du temps, ce que nous comprenons tous:

Un thème prédominant dans la musique, quoi que soit son style, son origine ou son époque, c’est la plus puissante émotion humaine, l’amour. Et la musique d’Aznavour n’est pas une exception, et on pourrait même dire que le thème principal d’Aznavour, c’est l’amour. Pour être plus précis, le titre de sa chanson la mieux connue dans le monde anglophone nous donne un thème plus spécifique: «Tous les Visages de l’Amour». Cette chanson, qui lui a donné son seul grand succès en Grande Bretagne en 1974 sous le titre anglais «She» , a connu un succès secondaire grâce au film anglais «Notting Hill» en 1999, dans lequel une version interprétée par Elvis Costello joue un rôle important. Que ce soit en anglais ou en français, les paroles de cette chanson expriment en termes lucides les joies et les angoisses que l’on trouve dans toutes les relations intimes : « Tu es un ange ou le démon » ;  «Un mot de toi je suis poussière ou je suis Dieu». Mais ce qui est bien clair dans les paroles, c’est que leur auteur croit absolument que ça vaut la peine : «Toi, viens fais de moi ce que tu veux/un homme heureux ou malheureux» sont les mots d’un homme qui comprend très bien que les joies de l’amour sont beaucoup plus fortes que les angoisses.

Dans d’autres chansons, on voit aussi que le compositeur a vraiment vécu ce qu’il nous raconte : il y a des paroles qui nous racontent la passion pure et simple, par exemple «Toi et Moi», mais il y en a d’autres qui racontent des moments plus difficiles, voire douloureuses : «Bon Anniversaire» est une histoire triste, pleine d’humour et surtout pleine de réalisme – il s’agit de l’amour  bien après la passion des premiers rencontres, mais un amour qui survit les problèmes de la vie quotidienne. «La soirée est gâchée mais on a de la chance/puisque nous nous aimons l´amour est le plus fort». Une autre chanson nous raconte une liaison ratée : «Viens pleurer au creux de mon épaule» exprime les mots d’un homme coupable qui ne veut pas que son erreur, aussi grave que ce soit, soit punie. Et dans «Non, je n’ai rien oublié», nous suivons toute une histoire détaillée d’un couple qui se retrouve après on ne sait pas combien de longues années, mais qui ressentent tous les deux la force persistante de cette plus profonde émotion.

Cette dernière chanson a aussi un sens très marqué de la nostalgie exprimé dans son titre, ce qui sert très bien à introduire le deuxième grand thème de la musique d’Aznavour: celui du temps qui passe, même le temps qui s’enfuit. A un certain niveau, il s’agit tout simplement de la nostalgie: Sa chanson peut-être la plus célèbre, certes la plus souvent interprétée par d’autres chanteurs, c’est bien «La Bohême». Une histoire? Une vraie histoire? Peut-être que oui, mais à mon avis il ne s’agit pas d’une lamentation pour une amante perdue, mais plutôt pour un mode de vie perdu, un mode de vie qui en réalité n’existait vraiment pas dans tout son détail, mais qui représente quand même quelque chose de précieux non seulement pour le compositeur, mais aussi pour toute une génération française.  Il regrette le passage du temps et même la perte d’innocence ou peut-être plutôt la perte de la simplicité de la jeunesse quand «nous vivions de l'air du temps», sans soucis pratiques. Ce qui est clair à la fin de cette chanson, c’est que cette vie simple et joyeuse est très éphémère et donc vraiment précieuse.

Une autre chanson nostalgique, c’est bien sûr «Pour faire une Jam» - une chanson en style jazz qui évoque l’ambiance des cafés bohémiens dans la rue de la Huchette au  cœur du Quartier Latin, où le jeune Aznavour a passé son enfance. Celle-ci est une chanson simple et joyeuse mais avec un sens de regret des meilleurs jours d’autrefois. De la même façon, «Mes Emmerdes» est une chanson qui évoque sans regrets et avec une certaine joie les moments d’autrefois.

«Hier Encore», par contre, est une chanson qui exprime plutôt l’agonie de voir le temps s’enfuir, de voir disparaitre sa vie. Elle ressemble dans ses idées au poème «L’Horloge» de  charles Baudelaire, où le poète parle du temps comme un ennemi, un Dieu sinistre qui gagne toujours dans sa bataille permanent contre la vie. «Hier encore» semble exprimer les regrets d’un homme vieillissant qui n’arrive pas à apprécier ce qu’il a réussi dans sa vie, mais qui pense sans cesse à tous ses échecs, tout ce qu’il a raté : «Par ma faute j'ai fait le vide autour de moi et j'ai gâché ma vie et mes jeunes années». On pourrait même dire que ce soit une chanson existentialiste, pour la façon dont elle nous rappelle l’importance des actes dans une vie courte et fragile. Ça, c’est un sentiment fort difficile à comprendre quand on est jeune, mais dans une autre chanson nostalgique qui regrette dans une certaine mesure le passage du temps, on trouve un message nettement plus positif. «Sa Jeunesse» est une chanson qui parle non seulement du passage du temps, mais qui nous conseille de ne pas l’oublier, et donc de saisir tout ce que la vie nous offre en tant que jeunes «Lorsque l'on tient entre ses mains cette richesse/avoir vingt ans, des lendemains pleins de promesses»  - voilà  des mots qui nous rappellent les joies de la jeunesse et l’importance d’en profiter avant que ce soit trop tard - un message plus positif sur le passage du temps, et à mon avis un excellent conseil aux jeunes.

Il existe évidemment une vaste gamme de thèmes traités dans les centaines de chansons de ce chanteur-compositeur extraordinaire: un exemple frappant de la façon dont il ose traiter tous les aspects de la vie humaine, c’était la chanson «Comme ils disent», un traitement sympathique de l’homosexualité, sorti en 1972, bien longtemps avant l’acceptation moderne de l’amour homosexuel.

Mais on peut conclure que les thèmes les plus frappants sont ceux de l’amour et du temps qui passe, et pour moi, ce qu’on ne peut pas nier, c’est que ce sont les deux choses qui nous touchent tous, pratiquement sans exception. Presque tout le monde connaît au cours de sa vie l’amour, que ce soit l’amour réussi ou l’amour raté, souvent tous les deux, et c’est pour cette raison que nous pouvons nous identifier avec les sentiments qu’il exprime, embellis d’une musique si variée et émouvante.

Quant au passage du temps, c’est la seule expérience humaine que nous partageons tous, sans exception. Et donc pour moi, c’est celui-ci qui constitue le plus touchant de ses thèmes. «Car tous les instants/de nos vingt ans/nous sont comptés/et jamais plus/le temps perdu/ne nous fait face/il passe» Voilà des mots qui m’ont vraiment encouragés à profiter au maximum de ma vie.

Voici mon playlist de mes chansons préférées d'Aznavour:

Tuesday, 18 September 2018

Don't Forget to Remember - My mother, Alzheimer's and me.

This post takes me into uncharted territory in order to talk about an area of health much discussed and likely to affect all of us directly or indirectly at some time in our lives: dementia, specifically Alzheimer's disease.

I am writing this having noted that this week sees Alzheimer's Awareness Day on 21st September, two days before what would have been my late mother's 90th birthday. My mother Margaret Long died in 2013 at the age of 84, relatively young by some standards and indeed much younger than either of her parents, who both lived well into their 90s.

My mother, Margaret Long 
(née Cyphus) 
Her death was, however, a merciful release from a slow and agonising decline. She died afflicted by a particularly severe case of the disease, which led firstly to a period of anxiety and fear for her in the months following my father’s death in 2006, and then to a loss of memory which was absolute in an unimaginable way: she had no idea who she was, where she was or who anybody else was. This formerly vibrant, gregarious, talented and loving woman was reduced firstly to a cruel parody of her former self and then to period of mere existence in a world in which she had lost all ability to connect with anything or anyone at any more than a fleeting and superficial level.

I am writing this as a post largely because it helps me to get thoughts written down, but also perhaps to help others who may be dealing with the same situation to feel less alone. I cannot necessarily offer great hope.

Firstly, to put things onto context here is an account of my mother's life, lifted largely from the eulogy which I wrote and delivered for her funeral in March 2013:-

“Margaret was born on September 23rd 1928, the second child of my grandparents Cyril and Rose Cyphus. I knew Cyril and Rose well, and feel I have go to know them even better in recent years as I have researched their ancestry and re-edited her Cyril’s remarkable memoirs. He was descended from generations of Cotswold farm labourers on his father’s side, and from Hugeneot French immigrants on his mother’s side, but by the time Cyril was born, music, and in particular church music, was already firmly established in their lives: his father and grandfather were both organists in picturesque Cotswold country Parish churches, and Cyril went on via an education at New College Choir School in Oxford to a career as a church organist, choirmaster, music teacher and music examiner. Cyril’s youth was scarred by a period of active service in the First World War: he survived the Somme, and returned to the Western Front in 1918 as one of the first tank drivers, one of those who broke through the stalemate and brought that futile conflict to an end.

Margaret’s mother Rose was from a family of middle-class merchants, clergy and musicians: Rose’s father and grandfather were country clergymen, but her mother was the great-granddaughter of the Victorian musician Charles Henry Purday, harpist to Queen Victoria and composer of the hymn tune Sandon, which, with the words of John Henry Newman’s “Lead Kindly Light” provide one of the most beautifully evocative pieces of Victorian musical poetry.

Margaret’s childhood in the London suburb of Lewisham was simple and happy: poor but not desolate, with an older brother Tony, whom she idolised and a younger sister Liz whom she mothered. Like so many families of their generation, their world was shattered by the outbreak of a Second World War: Margaret had just won a scholarship to the prestigious Mary Datchelor Girls School, and the school was evacuated en masse, firstly to Ashford in Kent and then (when someone in Whitehall realised that moving children from London to a place nearer to the front line might have been a bad call) to Llanelli in South Wales.

There can be no denying the lifelong impact that the War had on Margaret, and in her old age it cast an ever darker shadow over her, particularly after she attended a 50 year reunion of evacuees in 1995: she was largely separated from her parents for almost six years, caring for a terrified younger sister and living with the respectable family of an overbearing Welsh civil servant who lost a son in the Battle of Britain while Margaret was with them. Of the many tales from that time, some no doubt embellished and exaggerated over the years, we are pretty sure that it is true that she had to go and fetch the drunken father from the pub, bring him home, sober him up and tell him the news about his son’s death.

And yet she became very attached to the family and in particular to her foster mother Mrs Wilson, who was heartbroken when Margaret had to return to her real family, and she kept in touch with her and attended her wedding.

Perhaps the most remarkable tribute to Margaret’s fortitude is the fact that, as soon as the War was over, she just got on with her life. Mary Datchelor School reconvened and everyone just got on with things, which for Margaret was a scholarship to the Royal Academy of Music, marriage, a family and a career in music teaching.

Of course my brother Chris and I, like all children of our generation, got a little tired of the “during the war” stories, but by and large, we lived all of our childhood and early adult lives with a brilliant mother who had very successfully put the trials and tribulations of her teenage years well and truly to the back of her mind. For that, we, and many others, have cause to be immensely grateful.

She met our father Arthur at the age of 22 when she agreed to deputise for a fellow musician - allegedly a boyfriend, whatever that meant in those days - as organist of Stamford Street Unitarian Chapel on London’s South Bank, where Arthur was embarking on his first ministry. They were in many ways an unlikely couple – proof if it is needed that the best partnerships are those of opposites, and of course they were happily married for over fifty years.

Their move to Bolton in 1953 must have been like moving to a foreign land. Arthur’s choice of a Unitarian Chapel in one of the poorest parts of a smoky Lancashire town landed her, a genteel and cultured Southerner, at the tender age of 24 as the Minister’s wife in a large, draughty manse in the shadow of two huge Lowryesque cotton mills, surrounded by Lancashire folk whose manner of speaking was to her barely intelligible.

Her escape was Bolton School Girls’ Division, under the newly appointed leadership of the legendary Headmistress Margaret Higginson – another bewildered innocent southerner abroad, who became a lifelong friend. She started work there as a part-time piano teacher around my first birthday – scandalising those who thought that the Minister’s wife should be at home looking after her two children.

But Bolton School was an oasis of culture amidst the dark satanic mills, and became her life for over thirty years, firstly as just a piano teacher, but later as a classroom music teacher, and finally and triumphantly as a Director of Music who presided over a golden era when, in a double act with the late Paul Blissett and a supporting cast of many, the school produced musicianship of unprecedented excellence in choral, instrumental and academic scholarship. I know that this excellence is still in evidence to this day.

But like all good teachers, she was about much more than her subject: under Higgy’s bold and innovative leadership – sorry, I can’t think of her as anything but Higgy – the school espoused the sort of holistic philosophy of education which all schools have subsequently bought into, and Margaret was at the heart of it. If she had a spiritual home, I think it was actually not the Music Room, but rather St Mark’s Cautley, that imaginative outdoor pursuits centre bought jointly by the Boys’ and Girls’ Divisions in 1968, and where Margaret, Higgy and others including me spent some of the happiest days of their lives in the midst of the remote Howgill Fells.

Lest this gives the impression that she was just wedded to the job, let me dwell awhile on Margaret as a mother and grandmother. Chris and I were brought up in the happiest of families, guided and cared for by our Yin and Yang parents. We fell asleep at night to the sound of father bashing out sermons on his typewriter upstairs in his study, and mother playing the piano downstairs. She taught us to love and laugh, but also manners and standards – I still find myself using her saying “Don’t take your standards from others” when countering the excuse that “everyone else does it”. Of course we led her a merry dance at times, and I don’t think she ever forgave us for falling under the spell of pop music in the early 60’s thanks to our cool next door neighbours, whose son played in a pub band – the Heebie-Jeebies - and whose teenage daughters babysat us and played Beatles records to us, but in later life I have come to love and appreciate her music as well as “that dreadful Beatles stuff”.

She adored becoming a Grandma at a fairly young age, and delighted in her spritely energy and physical fitness – she wanted to be an active Grandma, unlike her own housebound and often bed-ridden mother, and loved it when Felicity, Nick, Rosie and Natalie were in her care.

This caring and interested nature showed itself outside the family as well: in early retirement, she devoted her energy and intellect to the CAB, and she was a great lover of the theatre and concert hall, enjoying the proximity of Manchester and its cultural life when we moved from Bolton to Prestwich in 1975”.

Quite a life, and a life well lived. For many years, she seemed indestructible, like many of her generation. But then came Alzheimer’s. If you are reading this, worrying about an elderly relative, please forgive if what follows depresses you. There is no glossing over it - it’s horrible.

It started in the later 1990s as she approached the age of 70. It was subtle and imperceptible at first. We all forget things, we all repeat ourselves, and it gets worse as we grow older. She always had a tendency to reminisce and tell lengthy anecdotes and perhaps to elaborate and exaggerate them - don’t we all - but gradually there was a sense that it was more than that. The same stories were repeated, sometimes during the same conversation, and details got changed or exaggerated at each re-telling. Then she started forgetting or overlooking things, sometimes double booking herself for engagements, for example.

At first, it could be explained away: “we all make mistakes”, “we all forget things”, and old age catches all of us out at times, we thought. But eventually, members of the family compared notes and realised that we were all getting concerned. Specifically, I remember her younger sister Liz taking me aside, in summer 2003 at their brother’s funeral, and asking me conspiratorially if we were aware that Margaret kept repeating herself. We were all relieved to share the concerns, and by then my brother and I had raised it with our father, who although nine years older than her, was still in good physical and perfect mental health. He responded with a “thanks but no thanks” approach, acknowledging that there was an issue, but firmly resolved to deal with it himself. He didn’t want to rock the boat and said she would “make his life hell” if he made her go to the doctor about it.

As time moved on, and our father's health declined, it became clear that things were far worse than we were allowed to see. The biggest issue was that not only was she in denial about it, but that she was aggressively defiant of any attempt to make her confront the problem. By the time our father fell ill in 2006, it became clear that she was far more dysfunctional than either he or she had been prepared to admit, and the extent to which he had covered up her memory loss by taking on all household management tasks, cooking, cleaning, laundry etc started to become apparent. When he became frail and ill, she was incapable of doing anything to cope with the situation. By the time that he died, her grasp of reality was so limited that she had to be repeatedly reminded that he had indeed died. She was still physically quite robust, and fiercely independent, so some incidents were almost comical. For example, when we all rolled up at her house on the morning of his funeral, she cheerfully greeted us at the door, dressed in casual clothing with “lovely to see you, thank you so much for coming to see me”, totally unaware of why we were there. Her two daughters-in-law had to gently take her upstairs to choose an appropriate outfit and remind her where she was going that day.

But over the subsequent months, things went into a downward spiral, with her denial of the issues that she faced compounding the difficulties. She kidded herself that she was a strong, independent woman defying the years, but in fact was quickly losing touch with reality. She would phone and tell stories of what she had been doing which turned out to be complete fiction; for example she would invent stories of break-ins at her house, complete with visits by the police, which turned out to be complete fabrications.

Sadly, during this period, she fell victim to real crime: a local youth befriended her and offered to help her with some jobs around the house, charging her for things like changing light bulbs. She gave him her bank card and PIN, asking him to get cash for her from the ATM, and of course he helped himself to significant sums from her account until we rumbled him and he was eventually caught by the police using a security camera. Unfortunately, no crime had been committed, as she had asked him to get the money out and had shared her bank details with him, but it showed her vulnerability.

She still pretended that all was well, even claiming that her former school had been in touch asking her to come back and help out as a supply teacher, or that the CAB had begged her to resume work as an advisor. She said that she still played and practised the piano, but it soon became obvious that she could no longer read music, and in fact played just one piece (Mozart’s Rondo Alla Turca) at breakneck speed and on endless repeat. A tragic end to a life devoted to musicianship of the highest order.

Eventually, after she had been found wandering the streets late at night by the police, and had started inexplicably to empty her rubbish bin into next door’s garden, pick dozens of flowers from gardens along the street, and feed her beloved cat with rich tea biscuits, we had to take action. Her aggressive refusal to acknowledge any problem meant that we had to get her diagnosed through making her believe that appointments were for other medical issues (it is agonising having to deceive and con your mother), and eventually she was admitted to hospital after sustaining a mystery ankle injury when out walking alone. Doctors admitted her for her own safety, and by this time her short term memory was so poor that after two or three days as an in-patient she had forgotten she even had a home. This was in spring 2011, and she never returned home, but was transferred to a care home after a psychological assessment ruled her to be a danger to herself and others.

From then on, the mental decline accelerated, with our own guilt at her being in care offset by the knowledge that she was at least safe. She very soon had no idea who we were when we visited (which my brother and I did, at least weekly and often more), and her grasp of any sort of reality evaporated. She apparently demanded and devoured meat pies, totally unaware of what they were, despite being a lifelong and militant vegetarian. She sang along with a cheesy Tom Jones tribute act who came to entertain residents, despite a lifelong revulsion at popular music. Fleetingly, she appeared happy in her own La-La Land for a few weeks, but she quickly lost the capacity for any sort of human interaction. In the end, she rapidly became a mere shell, existing and not living, doubly incontinent, her brain clearly shutting down one section at a time until, mercifully, it forgot how to keep her heart and lungs going. She died peacefully after falling into some sort of coma folowing a short illness.

It’s a bleak tale, and as I enter my sixties I am haunted by the fear that I could go the same way, or rather that my family and friends would have to watch me go the same way, because the positive as far as we could see was that she herself suffered relatively little in those final months.

Our biggest regret is perhaps that we should have confronted her and our father when they were covering it up in the earliest stages. Could an earlier diagnosis have helped? Who knows?

All I can say in conclusion is make the most of your loved ones while they are still there, not just physically there, but mentally there. If you are concerned about a loved one, seek help. And amongst the many worthy charities who seek our financial support, spare what you can for Alzheimer’s research. We have to believe that we can perhaps one day live out our old age free from the fear of this insidious disease.

All my posts have a song title, so why should this be an exception? Let's call it Don't Forget to Remember.

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