I know two things about ALS, also known as Lou Gehrig’s disease: 1. It’s awful, and 2. It’s awful.
I have only had a couple of experiences with ALS and those were just knowing people who had a loved one with the disease. A friend of ours lost her partner of thirty years to ALS in 2007. I never knew Jane, but Andrea said she was witty, vivacious, and fun. Andrea also said it was excruciating to watch Jane lose her speech first, followed by declines in motor functioning that eventually led to no mobility at all.
Andrea and I sometimes talk about what it would be like to have a disease like ALS, to watch helplessly as your body deteriorates until you can no longer move. What kind of life is that? How can one be resilient in this worst of scenarios?
It never fails that when I ask these kinds of questions the universe slides an answer right under my nose. Literally, this time, as I sat at our kitchen table bent over our weekly paper, The Almanac. A headline caught my eye: “Teacher dies after battle with ALS”.
Hmmm. There must be more to this story as this was no usual obituary but an actual article written about this man. I picked up the paper and began to read.
Jason Picetti, age 42, former middle school math teacher, diagnosed with ALS in 2008. Married and the father of a three-year-old daughter. “Aww, poor guy,” I think to myself.
As I have observed previously on this blog: O, me of little faith.
Reading further into the article, I see that Jason wrote a blog. “Yes, good resiliency skill,” I note, “Probably a great way for him to vent.”
Then I read the title of his blog: The Adventures of ALS Boy. I grin. Wait a minute. This is no mere venting blog, I can tell that by the title. This guy has chutzpah. I go to my computer and punch in www.alsboy.com.
After reading three posts, I came to the conclusion that my “Aww, poor guy,” response wasn’t even close to an accurate thought about Jason Picetti. “Wow, what a guy!” was much closer.
Here are just a few of the aspects of resiliency to be found in Jason’s writing:
Jason has listed a quarter of his posts over the last three years under the category of “Allegedly Funny.” I think he is the only writer who has made me laugh over stories of haphazard drooling and the “unearthly howls” of spontaneous yawns.
2. Radical acceptance
I would have just called this regular ol’ acceptance until my friend Susan pointed out that it is really radical acceptance. Jason had been diagnosed with ALS – a fatal and “awful” disease – only seven months earlier, and here is how he introduces himself in his blog:
In his days prior to wearing the cape and cowl of the Amazing, Inspiring and Adventurous ALS Boy, Jason Picetti’s not-so-secret identities included weekend warrior rock star, enthusiastic and motivating middle school math teacher, and all-around decent guy. While still a decent guy, he has been battling the evil forces of ALS since being diagnosed in February of 2008. Never one to shy away from a good fight, Jason has been combining the healing forces of western medicine, alternative medicine, a positive and never-give-up attitude and mindset, and the love and prayers and support of his incredible family and friends to win the toughest battle of his life.
Here is a man who knows what he is up against and accepts it fully so he can utilize his arsenal of “healing forces.”
3. Using an arsenal of healing forces
Not to be redundant, but Jason’s use of his medical team, family, friends, and anything he can think of to live well with this disease is a great example for us to tackle even our “ordinary” problems with an eclectic arsenal of support.
4. The art of active non-resistance
Although Jason uses language like “battling the evil forces of ALS”, he also practices non-resistance by being able to hold two fairly opposite thoughts/feelings at the same time using the magic word and: I don’t like ALS and I’m going to live my best life with it.
At one point, Jason tells a story about how he figured out on his own how to get his thumb unstuck from his involuntarily clenched fist in the middle of the night. He ends with:
I grinned like a cat who had just made short work of the family’s fine feathered friend as I drifted off to sleep dreaming the dreams of the victorious champion.
Jason, you will always be a champion to me. Thanks for showing me that just because a disease is “awful” doesn’t mean your life has to be the same. Rest in peace and joy.
Takeaway points: Want to be inspired? Awed? Laugh out loud? Read The Adventures of ALS Boy. Start with the first post and read all the way through. You’ll laugh, cry, and you’ll never be the same.
What do you learn from ALS Boy?