I’ve
never been particularly prolific on social media or as a blogger. I prefer to
use fewer, more considered words rather than too many words in the real world
and I am no different in the online one. Moreover, it's been an exceptionally
busy few months for me, with various post-retirement involvements and
responsibilities all bringing worthwhile, enjoyable yet time-consuming tasks my
way since the end of summer. And with two members of my family near and far, as
well as a best friend, unwell in recent days, that too has been more of a
priority than shouting into the echo chamber of diabetes Twitter during this Diabetes
Awareness Month.
I've
looked on as November has brought the usual crop of posts, tweets and images,
all aimed at raising awareness, especially in this centenary year of the discovery
of insulin therapy. I’m a little bit concerned that it’s starting to become a
bit dutiful and ritualistic, but I admire those who persist. There is a growing
sense that it's all been said before, and the “awareness-raising” posts that
crop up on Twitter, Facebook and Instagram during November in the run-up to
World Diabetes Day on the 14th often seem increasingly contrived or recycled. I sometimes worry that awareness raising does nothing more than preach to
the converted.
Having said that, I have read, this year as every year, some wonderful observations and stories which serve to remind us all that we are far from alone, and for those newly diagnosed that there is a long and fulfilling life to be lived despite the undoubted challenges of managing the condition. Such posts and stories encourage others, and encourage me to keep writing and sharing, and more importantly to enjoy the work of others.
I enjoy writing, and so if and when I find something worth saying, I shall say it. There's no point in just writing for my own pleasure, so I
shall continue posting here and hope that some will enjoy it. However, as
befits my long-held and oft-stated position, I have little expertise in
diabetes, only experience of it, and limited enthusiasm for diabetes
technology, so there's not much for me to write about in the field of diabetes.
Heaven forbid that I should be thought of as a “diabetes blogger”.
So I
am writing and posting this piece for Diabetes Awareness month, and for WDD on
Saturday. It’s a long-overdue reflection on ArT1st Live, already fading into a
distant memory, yet in many ways the proudest day of my 24 years living with
diabetes, and a day which encapsulated so much about my attitude to the
condition. It’s about diabetes, yet it isn’t. Just like me.
The ArT1st Project - still very much current and future as well as past - came to a triumphant climax on Saturday 25th September, with a gathering of around 150 people from across the UK and beyond at Drapers’ Hall in the City of London for a celebration of the creative and artistic talents of people living with Type One.
The project had originally
been the brainchild of Partha Kar back in 2019, and was supposed to be a
one-off real-world event. He invited a group of enthusiastic community members
- both HCPs and people with diabetes – to start planning an event, but it fell
victim to the Covid-19 Pandemic and became an online event, which provided a
much-needed distraction for organisers and contributors alike during the tough
days of the first and severest lockdown in 2020. The website remains a
wonderful reminder of what was achieved by so many, and will remain for the
foreseeable future as a reminder of those difficult yet in some ways
life-affirming days.
However, as soon as circumstances permitted, the organising team wanted to make the live event happen, and happen it did: perfectly timed in many ways, despite more than a few Covid scares, it proved for many of us to be a welcome return to real-world socialising, to the joys of dressing up, of eating and drinking together, which are such an essential part of what makes us human. The sense of excited anticipation that comes with getting dressed up, the “how do I look? feeling, the butterflies in the stomach, were forgotten yet precious emotions. And there was so much to enjoy about the evening:
The
venue, Drapers’ Hall was simply perfect, and a source of real personal pride to
me, having secured it thanks to an unlikely centuries-old connection between
one of the City’s most prestigious guilds and a small-town school in Lancashire
to which I devoted an entire working career. Everything about it was
pitch-perfect, notably food and drink of the highest quality, discrete and
attentive service by the catering team, and rooms which almost literally took
the breath away of all seeing them for the first time.
The Livery Hall, Drapers' Hall |
The attendees - people with diabetes, their families and NHS professionals who care for them - were a delightfully esoteric mix, bringing together some familiar names and faces from the world of diabetes care and advocacy yet also many more who had seldom, if ever, met or interacted with others from the diabetes world. That alone was a triumph, extending the reach of the community in a new way.
But above all, the performances and artwork to which we were treated were phenomenal, and gave us a powerful reminder that Type One Diabetes, that most random of afflictions, creates a community which is a random collection of individuals, impossible to categorise by age, gender, lifestyle, personality type, wealth or anything else. In this case, all they had in common other than T1D was a remarkable level of creative talent, and a wonderful willingness to share it.
Ed Gamble |
Anibal Miranda |
The Darling Buds of May |
Abigail Ackerman |
She was followed by the wonderful Duke Al Durham, a Welsh rap poet who voices feelings familiar to all of us in his intensely personal writings.
Duke Al Durham |
Next came Siobhan Argyle, a T1D Glaswegian Victoria Wood, whose catchy, witty and engaging ditties of everyday life during the pandemic were delivered with a confidence which belied the fact that this was her first public performance.
Siobhan Argyle |
And finally there was Sheku Kanneh-Mason: what can we say? Already a household name thanks to his appearances on BGT, Harry and Megan’s wedding, at the Proms and much more besides, he brought his cello to life in a manner which was, almost literally spellbinding. The fact that, before and after his performance, this delightfully self-effacing young celebrity just sat at a table with other guests, and that he duetted with Sophie Oliver with not a trace of self-importance speaks volumes about the man. Truly a superstar.
Sophie Oliver and Sheku Kanneh-Mason |
So
much else was good about the evening, most notably the chatter in small groups
that is always one of the best things about any real-world get-together, but
almost forgotten is the fact that the evening raised a much-needed £6000 for JDRFUK, whilst
being pitched at a cost to attendees that made it accessible to all, thanks to
the generosity of commercial sponsors Abbott, Novo Nordisk and Dexcom. An
auction of artworks created by people with Type One raised almost £2000 thanks
in no small part to Partha Kar’s persuasive mastery of a skill new to him.
Professor Partha Kar, OBE |
But perhaps the best thing about Art1st as a project and ArT1st Live in particular is that Diabetes has been present, yet totally absent. Does that make sense? Of course it does! That, surely, is a realistic aim for all of us compelled to live with this fickle condition, and I have been fortunate enough to be able to live that out that aspiration over these past 24 years.
Art1st Live was a gathering dominated
by people who live with the condition, all of whom will have spent that evening
discretely aware as always that their condition needed their attention, that
the unusual circumstances of the evening, the unfamiliar food and drink, the
late night, the excitement would all have to be borne in mind if they were to make it to the end with enjoyment and dignity unscathed. And yet all they
did was enjoy themselves. Diabetes was there, but was largely unseen except for a lot of technology proudly on display because of sleeveless dresses. It was an evening of fun and friendship, about the people, not the diabetes, the ability not the disability.
As
with all my posts, I like to find it a title from a song, and this one came to me as
I sat alone in my hotel room after the event, unable to sleep yet enjoying the
memories already. An exuberant celebration of a wonderful night out? What better
than Franki Valli and the Four Seasons’ 1976 classic? Let’s just rename it with
a revised full title: September ’21 (Oh What a Night!). What a night indeed,
and one which, by popular demand, will surely be repeated before too long.
In conclusion, I must salute my fellow organisers: Agnieska Graja, Pete Davies, Partha Kar, Ros Gray, Lydia Parkhurst, Lis Warren, Sarah Ali Racanière, Jazz Sethi, Ellie Huckle, Kamil Armacki, Jess Broad and Danni Hitchins. As good a team as any I have ever had the pleasure to work with, and one linked by one thing: a life with, or caring for others with, Type One Diabetes. Patients, health professionals, a charity and three commercial companies working together. Take a bow:
Members of the organising team |
ArT1st Live was sponsored by headline sponsors Abbott and Novo Nordisk, and supporting sponsor Dexcom, in order to allow all proceeds to go to JDRF UK.
All organisational work was carried out by community volunteers, supported by JDRF staff.
Photo credit - Max Turner Weddings
Twitter: @maxturnerphoto
Instagram: @maxturnerweddings
Website: www.maxturnerweddings.co.uk