This was posted on my friend, Derek Maingot, on his Facebook page on August 21. He kindly agreed to let me repost it here.
I’ve been asked by several hundred (slight exaggeration) people now why I’ve not done the ALS Ice Bucket Challenge. Two WEEKS ago Zhan was the first person I saw on the internet doing this, and he challenged me.
This is long before it took off and I kind of feel proud to have been one of the first to get challenged.
He challenged me because my dear friend Michael was slowly beaten down by this disease. 13 long years of fights. 3 years ago, on August 22 he sent us an email that he’d prepared, saying that he finally succumbed to ALS. The subject of the email was “That’s all she wrote”.
So why have I not done this challenge? Yet?
Well, I’ll be honest, I’ve been having a BLAST watching this thing go viral. I originally promised Zhanny to try (TRY) and do something at Burning Man next week. Those of you know know me know that this disease is the one that I’ve always raised money for over the years and marched in Washington several times with Michaels Fund Raising Team the JackALS.
So I donated and I’ve sat back happily watching my nephews and friends’ kids talking about a disease that they previously knew nothing about. Awareness has gone through the ROOF and so have funds to help people living with the disease. Michael hugely benefitted from these funds from the ALS Association. It’s not all about ‘research’ and the idiot haters out there obviously know NOTHING about how non-profit organizations operate and how they help people with ALS. As that amazing kid said on his video, you’ll soon return to watching cats. For now this is a great spotlight.
Anyway, I’m just so FREAKING happy that this is all happening. We would fight to raise 30, 40, 50 thousand dollars at our walks in DC, and as of today, people have donated a thousand times that amount. I can only smile and know this is all good.
My challenge might be probably among the last to get done, even though I was one of the first to get challenged, but my heart swells to see how great this has worked. I’m proud of everyone.
I hope (HOPE) to get to it next week! But don’t misunderstand my participation. I love EVERY one of you who have helped in whatever role you played!!!
As Michael wrote in his final email “Whatever role you played—friend, family member, colleague, lover, bridge partner, co-conspirator—thank you. Thank you for humoring, befriending, entertaining, enlightening, enabling, abetting, loving, and/or tolerating me. My life was richer for your presence, and I hope you got something in return.”
I did old friend. I did.