How I Learned to Share My Alzheimer's Story
One of the hardest things about being an advocate for this cause — for me at least — is sharing my story. It is something I do not think about until the last moment, right before a fundraiser or right as I dial into a radio show or the moment someone is fastening a microphone to my waist to appear on a television program. In those moments, I panic; I wonder what I have gotten myself into and my eyes begin to fill up with the words that will come out, whether I think about it or not.
Opening up publicly
I have been sharing my personal connection with Alzheimer’s in public arenas since 2010. At the beginning it was through email campaigns to everyone in my address book, telling them personal details of my relationship with my Poppop. Like that he used to call my Dad a “paint catcher” to rile us up; that he enjoyed Breyer’s ice cream, Neopolitan, and a quiet moment during the six o’clock news; that we shared moments woodworking and putting together puzzles - all of these tidbits would have me sobbing (luckily from behind a computer screen).
Today, my sharing is a bit more public.
Blood, sweat, and tears
My heart began to accelerate from the moment I parked outside of Bok Building with the knowledge that I would stand in front of a group of yogis to tell them why they were here, donating their money to the Alzheimer’s Association.
I was especially grateful for layers of makeup and clothing heading into a brief television spot, convinced if it was any longer than three minutes that the sweat would be pouring out of me at an uncontrollable rate.
My brain was completely blank as I called into a local talk radio show — so much so that my first answer to a question began with “I don’t know…” It was followed by a pause that, in the moment, felt like an eternity, before muscle memory kicked in and I did what I do best, became a font of information about Alzheimer’s, the Walk to End Alzheimer’s and my story, specifically.
And then it clicks
It is not any easier 10 years into opening my heart and putting it on display. I still want to cry, I will swear that everyone can see that lump in my throat, my hands are wringing with sweaty palms and, for a moment, I feel like an imposter.
But practice has also told me that each time, I will be able to get out some version of the following:
“Hello, my name is Shannon Simcox, and I lost my grandfather in 2015 when his battle with Alzheimer’s ended. It’s a story you may know well, as more than 5 million Americans are living with the disease and it’s the sixth leading cause of death in the U.S., and yet we know so little about it. As such, I donate my time and fundraise to participate in the Philadelphia Walk to End Alzheimer’s, because together, we can find a cure for this horrible disease. Thank you.”
Have you checked out the stories submitted by other community members?