Friday, June 24, 2016

Race for Chris Rosati: Part 1

This post is part of my 2016 quest to do 12 marathons, half marathons (via trike) or triathlons to honor people with ALS who have been inspirational to me. This was really Race #3 but got out of order because frankly there's just a lot to say about Chris.

So after we returned from Turks & Caicos, Shy Tuna and the idea of writing a book about courageous people with ALS kept swishing around in my mind. A week later, we had brunch with my race director (/marathoner/breast cancer survivor/rockstar) friend Amy and her daughter Julia. I pitched my idea.

“Do you know Chris Rosati?” she asked.

“No. Who’s he?” I said. When she told me, I stopped with the fork halfway to my mouth. I knew instantly that I'd found another story to tell. Hell, his could fill an entire book (which I hope he'll write one day).

When Chris was diagnosed with ALS at the age of 39, he was VP of marketing for a health care company in Durham, NC. Always active, he'd been an avid soccer player and a triathlete(!) when he began noticing a peculiar weakness opening a jar.

Although he continued at his job for another two years, he was restless, impatient. He raised eyebrows by walking out of meetings that didn't seem worth his time (News & Observer, 8/23/14). Time he was running out of. So, he quit.

Shortly thereafter, he was invited to give a talk at his old high school. He spoke without notes, without preparation, but got everyone’s attention with his opening line. “I told them I was there because I was going to die, and this has given me a perspective on life,” he said.

He said his only regret in life was having worried too much. For some reason, he brought up a funny dream he’d always had to steal a Krispy Kreme truck and give away doughnuts like Robin Hood.

And then he did just that

Capitalizing on the national and local media attention, Chris created a nonprofit organization, the Inspire MEdia Network. He launched the BIGG initiative (Big Idea for the Greater Good) to encourage young people to submit their “most creative, bold and uncommon ways to enrich the lives of others.” Inspire MEdia picked 7 winners, the students filmed themselves carrying out their ideas, and held a red carpet event to show the results. Some of the projects included:
  • Treating homeless strangers to a fancy dinner
  • Hosting the “Wheel of Kindness” at a mall where adults had to do the random act of kindness that the spin landed on (e.g. hug 10 strangers)
  • Dressing up as superheroes and visit a children’s hospital
  • Setting up a booth for adults to color like kids.

Chris' next idea was to test the butterfly effect -- the theoretical concept in physics that a butterfly beating its wings can eventually lead to a hurricane. He saw two girls at the table next to him at a restaurant and gave them each $50 to “do something kind.” The sisters, aged 10 and 13, decided to throw a party for a village in Sierra Leone to celebrate being Ebola-free (their father had served there in the Peace Corps). Chris learned of the celebration when he got an email with this photo attached:

Inspire MEdia’s newest initiative is to create BIGG Clubs in schools. The kids come up with projects to make their community a better, kinder place. For example, one club made care packages to say thank you to bus drivers and cafeteria workers. The projects empower kids to "love deeply, to pursue their dreams, and to help others in the process."

I can’t think of a better legacy. 

I could go on and on about his creative genius..the black-tie gala that included a lip sync battle...his snappy dressing ------->

But the best way to understand why he does what he does, is to see how he looks at his family (kudos to my wonderfully talented photographer friend, Tamara Lackey, for capturing these images!).

Chris has had a rough 2016. After putting off trach surgery twice, he is recovering and adjusting to his new reality (again). If you don't know what a trach is: first, count your blessings. Second, read on because Chris, as usual, has the best explanation:

"That machine feeds air into a hole in my neck. If the tube comes out, I have about two minutes. And while you don't notice that you cough slightly several times a day to clear your lungs, I cannot. So about 2-6 times an hour, someone has to basically vacuum my lungs. That means someone has to always be within earshot."

Third, count your blessings again.

Up Next:

My race report from the Emerald Isle Marathon as I attempt to do justice to all that Chris Rosati has taught me.

Happy Friday!

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