“It’s Not Funny, Allie”
Remember when I told you a few weeks ago that I was going to shift the focus of my writing to include other people’s stories? Well, WOHOOO…that starts today!
Genuine question for you first: do people ever tell you you’re funny? Is that a thing that everyone hears from time to time? I’m curious because I have been told I’m funny my entire life and I secretly want to believe it’s true, but deep down, I feel like maybe it’s just a thing that people say to someone who is annoying. Ha!! But maybe it’s not totally far-fetched that I would have a quick wit because I am a proud Canadian - which everyone knows are very funny people. John Candy, Dan Aykroyd, Martin Short, most of the SNL cast, and, of course, RYAN REYNOLDS (i’ll meet him yet!). The list is long. In fact, I am the great grand niece of a true comedic Canadian legend - the one and only, Al Clouston.
Who is that now??? Well, if you happen to find Uncle Al’s Wikipedia page, you will learn that he was very “popular at conventions” and wrote books about humor in Newfoundland. In fact, here’s one he wrote, which was ironically called Cinderelly, an unwelcome nickname that Mike often got as a kid, which as my Dad said, is the circle of life. Uncle Al may not have made it to the big time, but it would be safe to say that comedy and wit run deep in my family genealogy and we Cloustons wear that like a badge of honor.
So I guess there was no question that I’d use humor to deal with this crappy curveball life has thrown me. I mean if you can’t laugh at being a brain health fundraiser for 10 years only to get your own incurable neurodegenerative disease, then you’re just not trying, am I right? Well apparently not everyone agrees, including sweet Barb, a total stranger who commented on one of my posts last week that in fact, “Parkinson’s isn’t funny, Allie.” Well, yes Barb, that is true. It’s not funny to be diagnosed with an “ugly” disease at 47 years old - one that has no cure and that threatens to take away my life as I know it. Thanks for pointing that out. But for me, finding humor in the hardest situation I’ve ever faced is honestly the only option. What’s the alternative? Be sad about it all the time? Hide from the world? Or do you try to find just something light l in the everyday struggle that this disease provides. I choose laughter - like I did for most of this photo shoot.
According to this article on Psych Central “The power of laughter can provide humor and healing when life gets hard. The health benefits of laughter are numerous — from emotional well-being to physical health. Laughter causes physical changes in the mind and body.Even anxiety, stress and depression respond to a good joke.Laughter counteracts stress hormones, increases endorphins, and helps you connect with other people.” So there ya go, Barb!
While using it as a defense mechanism may not be for everyone, I am super excited to introduce you to someone who has embraced her diagnosis with a sense of humor, transparency and honesty that I find so incredibly bad ass and inspiring. Like most of you, I downloaded the Tik Tok app during covid times and it provided me with hours and hours of mindless joy. Too many hours to be honest - but I love it. And don’t come at me with your “China is watching everything you do” nonsense. I am married to a Privacy Attorney - I KNOW!! But I don’t care.
Anyway, one day I came across posts by Brooke Eby and I was immediately hooked on her content. Brooke was diagnosed with ALS in March of 2022, just a few months before I was diagnosed with Young Onset Parkinson’s. We both had a several year journey to getting an answer and we both have apparently found the levity in our situations. Here’s a clip of Brooke’s story as told by Savannah Guthrie on The Today Show.
I read a quote by Mark Twain that said “The human race has one really effective weapon, and that is laughter.” If that’s true, then Brooke is well equipped for the impossible journey that ALS presents. Her willingness to share her joyful spirit with the world is vital and brave. I don’t love that term, generally speaking because I don’t think people should have to be brave in the face of a terminal illness - they should get to be whatever the heck they want to be in that moment. But I think it fits Brooke because she is putting it all out there into the universe - which I am quickly learning is both meaningful and also slightly terrifying - to try and infuse some hope into what is still maddeningly a hopeless disease. Her posts are wildly popular and she’s reaching millions and millions of people and changing the perception of what ALS looks like - which is a goal of mine in the Parkinson’s world.
I wrote a post a few months ago about the gift that is a life’s sentence and how hearing that you have something that has no cure changes your perspective on every single aspect of how you live. Your willingness to suffer fools (as my grandmother would say) evaporates and your focus on what is important becomes clear. Clear? Crystal. :) Brooke says that in a way, she feels like she was meant to have ALS and I have used that exact terminology about getting Parkinson’s. I relate to so much of what she posts and I can’t wait to chat with her.
So join us for my very first Instagram Live on Tuesday, Oct. 3rd at 8 pm ET. I’m no Savannah but I am so excited to interview her so she can share with us how she turned a terminal diagnosis into a mission of hope. So grab a bevvy and watch me learn how to use Instagram Live! Should be a fun night friends.
See you then!!