I wrote to some colleagues yesterday afternoon, thanking them for their help and saying, “Wish I could have a pint to celebrate!”
Yes, the “Explore Culture” Zoom discussion was over. Scheduled to last an hour, we had to stop it after 75 minutes. Joining us were over fifty attendees from the UK, Ireland, the Netherlands, France, Singapore, Brazil, USA, Guatemala, Panama, Japan, China and possibly more. I had the impression that some would have liked us to continue longer. If that’s so, regrets but probably it’s better for people to leave wanting more, rather than wishing we’d finished sooner.
It was a challenge in many ways. The themes were a challenge, covering a number of topics: MND, how I’m dealing with it, the blog, MNDA and research, accompanied or assisted suicide, fundraising. The technology was a challenge, moving from speaker to speaker to questions and answers, to me trying to look pretty and failing while listening to my own e-voice and the rolling script. Synchronising everything was a challenge. I’m used to public speaking but on this occasion, even though my pearls had been pre-recorded, the nerves were quite challenged. But it went well.
Let me publicly thank Minji and Tony and Lesley and Brian and Tim. A truly great effort. We pray that it will bear fruit – more interest and understanding for this awful illness, and more funds to help research.
Minji has a neat format for these talks. She asked me for music to play at the beginning and at the end. After some thought I chose part of a cheerful Torelli Trumpet Concerto to start the programme, and at the end the incomparable Louis Armstrong singing “What a Wonderful World”, which got me quite emotional though the eyes stayed dry … just.
As planned, Minji also recorded it. For copyright reasons she had to cut out the music, so the talk starts rather abruptly. It’s below, and can also be accessed any time by hovering over the ‘Media’ tab in the navigation bar at the top, then selecting ‘Zoom Talk’.
“What a Wonderful World”
Dear Dave, of all your many achievements through life, this must surely be amongst the finest and most admirable. To do this showed such courage and strength of character and I, for one, feel immensely proud to be your friend. I’m sure that by doing this you’ll be greatly helping the battle to raise awareness and the need for research and funds for MND. A huge well done to you, and to Tim, for all the effort and hard work involved
Shall be thinking of you tomrrow too xx
So very moving. Words fail me but emotions running high.
I can only reflect Janet’s comments above, which sum up my thoughts entirely. Well done, all of your production “team” ..it was truly wonderful and very moving.
Ditto to all comments above! Brilliant contributions from all in that event – including on MND Association’s research, approach, and “cautious optimism”; on various ways to donate; and rightly highlighting this treasure trove blog of extraordinary adventures, joys, insights, sillinesses…interspersed with such useful and supportive information on MND/ALS. All expertly MC-ed by blogmaster and carer extraordinaire Tim; and enabled by Minji’s idea and series. What a lovely bunch of people!
But I particularly wanted to highlight the session’s section on Dignitas, the compatibility of assisted dying with best possible palliative care, and the ongoing need for legal change in the UK and most of the world. Such a difficult and counter-cultural conversation, of course, but brilliantly done by Lesley, David and Tim -from 37minutes in. I’ve just been looking at Dignity and Dying mentioned in this, and added my name to their campaign for legal change (as in Canada recently, and now happening in New Zealand this year). “The assisted dying law would not result in more people dying, but in fewer people suffering “. See https://www.dignityindying.org.uk/ 💛