Overcoming my British reserve (all thanks to Amanda Palmer)

When I go to Glastonbury I prefer to wander around around, discovering music that I might not otherwise have heard if I stuck to a rigid list of bands I want see/the mass media suggests I see.

It was during one of these wanderings in 2013 that I found myself at the Other Stage watching the most amazing crowdsurfing I had ever seen.  I saw this incredible woman being carried across the crowds with a huge train billowing behind her, and all the time she was singing, a strong powerful voice, a strong powerful song.  This was my introduction to Amanda Palmer.

Amanda Palmer Crowdsurfing at Glastonbury 2013 (from glastonburyfestivals.co.uk)


She's a bit like marmite, you either love her or you hate her.  The next day I saw her speak alongside Billy Bragg and I knew that she would be added to my list of Glastonbury finds.

And so I have followed her ever since.  I have never had chance to catch a live performance again, and I guess now she's announced she's pregnant (with husband Neil Gaiman, isn't that some meeting of genes), there's not much chance of repeat crowdsurfing performance at this year's Glasto, but I have followed her (formidable) online presence ever since.  Amanda Palmer is so much more than someone who puts on a great show, she tells a good story and there's depth to it too.  So not only was she one of my Glastonbury finds, she is also on my list of favourite TED talks.  I'll post the link below but in a nutshell she spoke about how her experience as a street performer had informed her highly successful crowd funding campaign to finance an album and then how she continued to use this experience to ask for help as she took her music on tour . 

Her TED talk has evolved into a book The Art of Asking: How I learned to stop worrying and let people help. And within it she describes her own experience in asking for help to fulfil her goals and proposes a new model for artist and audience engagement based on mutual support.

Asking for help.  It's not something that comes naturally to us Brits.  We're reserved.  We keep calm and carry on.  It took a long time to ask for help to care for my disabled daughter, Daisy, and I still have feelings of guilt that as her mum I just can't manage all her care on my own (yes, I know....).  

A few weeks ago I was contacted by the support group for Costello Syndrome, Daisy's rare condition, asking me if I would participate in their forthcoming medical symposium which shares research on all the rare syndromes along the same genetic pathway as Costello Syndrome (collectively called Rasopathies) by presenting Daisy's story at a Poster Session, to be viewed by medics, researchers and other families.  What an amazing opportunity. One big problem though, the conference is in Seattle in July.  I allowed myself to dream for a moment then reminded myself of the reality.  Since being diagnosed with cancer last year Andy has been unable to work, there is no money available for peak season flights to Seattle and hotel accomodation, no matter how fabulous the opportunity. 
It was only after I jokingly put up a facebook status wondering if Bill Gates would pick up my bill for a return flight to Seattle that I was reminded by a fellow runner and Amanda Palmer fan, "what would Amanda do?", then my son sent me a link for setting up a crowdfunding site and before I knew it, I overcame my british reserve and I asked for help.

Within 48 hours I had raised enough to go to Seattle and stay in the conference hotel and present Daisy's story and hopefully encourage some researchers to continue delving away until they find some decent treatments for this syndrome that has turned our family and many other families upside down and inside out.

I am overwhelmed by the flood of kindness, that friends, family, facebook and twitter followers and strangers have shown to our family.  I know they know that there is nothing practical they can do to help our situation, the care Daisy needs is so specialist and Andy's cancer treatment is progressing and we are just getting on with things but this is something very meaningful to our family because it gives us a chance to share our knowledge and experience and maybe make a difference.


As I said on my crowdfunding page, I can offer those who donate nothing in return apart from my grateful thanks.  As those of you who follow my blog know I am a runner, I run to keep sane and I run to have time for me.  In June I am participating in a 12 hour Enduro run as a solo competitor.  I have to try and run as many 10K laps around Wimbledon common as I can manage over a 12 hour (overnight) period.  I offer up that run to all those wonderful people who offered up their cash to help me get to Seattle.  I will do you proud - on the trails of Wimbledon Common and in that conference room in Seattle.

Thank you - all you anonymous donors, I hope you get to read this.

 And thank you:

Margaret Layton, Lizzie Roper, Caryl Purdy, Rebecca Pearse, Deborah Whippey, Sapphira van Assema, Kim Fraia, Rebecca Willetts, Lee Grantham, Sophie Spaven, Kim Lawrence, Jenny Patterson, Anne Guy, Ian Bird, Lisa Burke, Jenny Madghachian, Ginnette Harvey, Hilary Perrott, Lynne Wilkins, Niki & Steve Bown, Simon Bell, Owen & Ellie O'Neill, Kathryn Leveratt, Annette Barrett, Norman Urquia, Chantal van Wyck, David Kent, Tracy Upton, Andy Simpson, Andrew Bolton, Deirdre Hogan, Justin Leese, Johanna Andersson, Christine Lander (Lydon), Kirsty Bagshaw, Laura Simeon, Bernardette Maher Allen, Rissy Brown, Stacy Curtis, Liz Scoffield, Benedict Wong, Alison Burton, Claire Darkins, Sema & Russell Faulkner & Boys, Michelle Howett, Polly McClean, Phil Wilkins, Monira Khanom, Tim Lloyd, Theresa Dillon, Ollie Ryan Tucker, Thijs van Dalen, Lucy Johnson & Family, David Johnston, Richard Booty, Helen Baylis, Tina de Munnik, Richard Wilkins, Ella Kirby, Danny Cohen, Debbie McKeown, Nigel Pulsford, Mary Haskins, Joanne Davies, De Pager Family, Sam Edwards, Dave Vinton, Windmiler, John Nimmo.

And so thanks to Amanda Palmer, I overcame my british reserve, I asked for help to do something that is very important for me and my family, and that help came flooding in.  In July (subject as always to the proviso that no further medical curveballs come our way and all chronically sick members of our family stay reasonably stable or at least on track), I will be flying to Seattle to attend the 9th International Costello Syndrome Family Forum and will present a poster all about Daisy at the 4th International RASopathies Syndrome.

But the biggest thanks (after my lovely husband who is happy to let me fly off without him even though he will probably be recovering from another big surgery at the time) is to my inspirational youngest daughter, Daisy, because without her I wouldn't even be doing this.



Here's the link to Amanda's TED talk





2 comments:

Liz Scoffield said...

To donate money is as easy as blinking and to my mind a no brainer. You forge a courageous path on a daily basis not just for Daisy, But for Andy Theo, Xanthe and Jules as well. You have the potential to go there and tell the experts about Daisy and the things you do on a daily basis to ensure she has the best chance of a home life. All their expertise and you are still the most qualified person in that room as her Mum.

She's come such a long way since that little girl I first met in St Martin's and my eyes were well and truly opened the day I met her. So go kick butt tell them the things they need to know so that Daisy and others around the world will have the best chance for the future.

Stephs Two Girls said...

That is amazing. You are amazing, and you will be amazing at the conference. You are doing it to help others when really it is others that should be offering you help and support. But I guess what this shows is that there are so many out there who would like to support in a way that they can, and I'm very pleased for you. I have to admit that I blinked and I missed your original story posting, so sorry! Good job you weren't depending on me, eh?! Wishing you loads of luck with this and fingers crossed tightly that all goes well xx

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