Monday, August 25, 2014

Will Scott McNealy Take the Ice Bucket Challenge?

Today marks the 6th Ice Bucket Challenge I've taken for ALS Awareness.   "Super Carpe Diem Woman" is dressed in a bathrobe, representing the time her "secret identity" was sick at home, and received a phone call from Former CEO and co-founder of Sun Microsystems, Scott McNealy.

When Scott did call me in 2004, I was sure it was a prank. It was hard to believe that the CEO of a major corporation would take time out of his busy schedule just to call someone on medical leave to "cheer her up." But Troy Wright, who was on my team, had emailed Scott and given him my phone number and suggested he give me a call! What a surprise!

That's not the only time Scott McNealy impressed me with his generous heart. When I asked for a congratulatory letter for my son's Eagle Scout ceremony, Scott personally delivered it to the Broomfield office so I would have it in time for the event.

Scott McNealy was always a leader I greatly admired.  "Kick butt and have fun" was one of his mottos and I loved the playful spirit that he instilled in the organization.

I remember being inspired once by a speech he gave about leadership. I don't remember the entire story but the moral of the story was something like this: It's easy to be positive when things are good, but truly inspirational leaders stay positive when things are not so good, and find a way to make things better.

I've thought of that lesson often over the years, and especially in witnessing Craig's positive attitude in the face of ALS. It was incredible to me how he could continue to find joy and humor in the face of such a devastating disease.

Saturday, August 23, 2014

ALS Awareness: Why the ICE BUCKET CHALLENGE is my dream come true

My name's Yvette Francino and I'm a goal addict. I set a challenging goal for myself and then I get so obsessed with it that I drive my friends and family crazy, trying to come up with ways to meet that goal. Often, if I have a dependency on someone else, it turns out that I bug them so much, they help me just to shut me up.

This year my "obsession" has been with raising awareness and funds for ALS. When 2014 rolled around and I was setting my goals, I decided I wanted to "make a difference" in honor and in memory of my friend, Craig Dunham. Watching him live and die with ALS, changed my life.  It's impossible to describe the tragedy of living with this disease, though Bo Stern, in her post What an ALS family really thinks about the Ice Bucket Challenge came close with this compelling piece and her empathetic exercises.

Seeing Craig progressively lose his abilities to move, talk, or swallow, while still displaying an internal strength, courage, and independence, changed my life. I still get teary-eyed whenever I think about him... not out of pity, but out of sheer awe and admiration of the incredible strength that I witnessed in the face of a disease that robs you of all physical strength. Yes, he literally had Super Power Strength to be able to find so much joy in life despite this debilitating disease.

So, in January of this year when I saw there was an opportunity to be on the Walk Committee for the Rocky Mountain ALS Association, I told the director: "My goal this year will be to join the committee and to be the top fund-raiser for that Walk." Since the top fund-raiser last year raised $12,000, that has been my goal. Thanks to many emails and very generous friends, I had raised over $6000 before the Ice Bucket Challenge even started!

Enter... THE ICE BUCKET CHALLENGE!  OMG! This was like a huge wish coming true! I had been obsessing about how I could raise awareness and funds for ALS and here comes an unbelievable viral movement that is doing that very thing! We're talking over $50 MILLION DOLLARS!!! My heart is overwhelmed with gratitude for all those celebrities and CEOs and superheroes and mere mortal people who are giving to ALS and spreading the word. How I wish Craig were here to see this. To tell you the truth, the "woo-woo" part of me feels like somehow he took part in orchestrating this whole thing, and that it WILL lead to a cure.

OK, so the real objective is being accomplished...  The funds and awareness are happening with or without my constant pressure, emails, posts to Facebook and YouTube videos.  Whether I raise $12K or not, whether I am the "top fundraiser" or not... these things don't really matter, right? That's all about MY ego... MY wanting to get recognized..  So why should I risk bugging my already-bugged friends with more messages and more videos asking to donate to MY page?

Well, for one thing, as we've already established, when I have a goal, I'm all in. I don't give up until I've met that goal. I still have over $5K left before reaching my $12K goal and just because $12K is a mere drop in that $50 million bucket, it's still a worthy drop.

Secondly, beyond making the money for ALS, what I want more than anything is for people to understand what it was like to experience what I experienced when helping Craig. We all hear how we need to "live life fully," but those words have so much more meaning to me now. We have no idea how much we all take for granted.  We have no idea how petty we sound when we complain or get annoyed by trivial things.

When I hear people complain about tiring of seeing the videos or being annoyed about getting asked to donate, I get it...  I complain about spam or about an overabundance of the same story on the news. So I feel shy or embarrassed about my constant requests for funds or my asks to share my posts or videos. I know that most people do not want to read or listen any more and I feel self-conscious that I'm getting on their nerves. Though I've gotten a few more donations since the Ice Bucket Craze, I feel I've kind of tapped out my friends and family, and don't feel very confident about raising another $5K.

And then I think about Craig and those who are currently living with ALS and realize, "How selfish am I?" Am I really so weak that I can let a little thing like being worried that I might bug someone stop me from fund-raising for a cause that I feel so passionate about?

I remember once when I was outraged because there was no wheel-chair access to Craig's church and I asked Craig if he was OK with me making a stink about it, and he typed out (with his one finger that still worked) "Yes! Thank you for being my voice!" So raising this money, spreading this message -- for me, it is part of how I can make some semblance of meaning to Craig's death. If I can do one good thing... if I can help spread the amazing spirit he demonstrated to one person..  if I can raise the money I committed to... then I'm keeping a part of him alive. Anything less, and I'd feel like I was giving up. One more of the very important lessons I learned from Craig was to never give up!

So I'm not giving up on my goals. I'll keep asking and sending blog posts and videos and ask you to share and some day a cure will be found to this awful disease.

Rest in Peace, Dear Friend
I'll do my best to live the way you did -- seizing the day