Donning red pants for a friend, a family, and a cause
Beth Kephart is the author of 21 books, including her new Jersey Shore novel, "This Is the Story of You," a starred selection from Kirkus Reviews
is the author of 21 books, including her new Jersey Shore novel, "This Is the Story of You," a starred selection from Kirkus Reviews
The intersection of memory and place. That's what I've written of here. One story each month in the pages of my hometown paper.
The sound of my grandmother's Charleston reverbing back through time as I stand in an alley behind Guyer Avenue.
The walk I take on Delancey at the gloaming hour, my son casting his tall shadow at my side.
The feel of Stone Harbor sand on my feet - now, but also then.
The rub of Grand Old Lady velvet at my back as I sit beside my father lost in the musical Once.
I look back over these stories and it is clear: At the intersection of my memory and all these cherished places is love not just of river bends and bricks and boardwalks, but of our incalculable humankind.
So let me take you now to a place that no longer exists. An ordinary office in an ordinary office building in Chesterbrook, where a man named Mike Yasick sits, a phone pressed to his ear. It's early March 2013. His feet (he tells me, for I'm on the phone's other end) are up on his desk. We're talking because that's what we do. Because he heads the division of one of my client companies, Shire, and because it is my job (or so he says) to write the stories that will make him famous.
Or, as we say, more famous.
He's fair-skinned, bright-smiled, the kind of smart that welcomes goofy. He buys people things for no good reason, takes his wife on a multistop trip around the world, hurries home to the son who is about to cook a meal, talks (you've got to stop him) about his beloved daughters, is ready and willing with endless tales about a seeming infinitude of friends.
At the moment, he's looking ahead to his 50th birthday, a few months on - a feat that is no regular milestone. Mike is older than his father was when his father died, older than his brother was when his brother died, and quite nearly older than the average age of those who, like him, have been diagnosed with vascular Ehlers-Danlos syndrome (VEDS). VEDS is the most severe and life-threatening form of a rare genetic disease that maliciously attacks the connective tissues that are essential for life itself. People with VEDS are prone to spontaneous ruptures of organs, persistent muscle tears, and unusually loose joints. Surgeries, pregnancies, and contact sports all take them straight into the danger zone.
But Mike is going to make it to 50, make it past 50 - that's his plan - and that's what, on rare occasions, we talk about, and what we are, on that day, talking about, until he returns to his normal smart-goofy state and asks: "You want to see how dumb I look in bright red pants?"
"Sure, Yasick," I say.
"Check your in-box," he says.
You, dear readers, are looking at the picture he sent.
It will be the last time I hear Mike's voice - my last interaction with him, save for a quick email, a few days later, when he writes to ask: "Are you superb?"
Two days after that, on March 8, 2013, with what some might say was no warning, but with what those with VEDS know to be a minute-by-minute-every-damned-day-since-diagnosis warning, Mike was gone. He'd been driving to work. That malicious thing happened. He did not live to 50.
Heartbroken, I wrote a blog sharing the Red Pants story. Somehow, the way such things happen, that post went viral. A week or so later, at the most crowded funeral I've ever seen, all of those who loved Mike showed up at a giant Catholic church dressed to defy in every shade of red. It's a scene that Mike would have loved down to every cuffed and zippered inch.
Mike's son, 25-year-old Christopher - a talented engineer, a brilliant photographer, that cook - would abruptly lose his own life to the disease in late 2014. Not long after, Mike's youngest child, Emma, a ballerina with soulful eyes, would be diagnosed. A family might just shut down after so much loss, but not the Yasicks.
Instead, the Yasicks and their infinitude of friends have created what is becoming a movement. The Red Pants Project (#RedPantsProject) - held this year on March 8 - is designed to celebrate the people in our lives and to express gratitude for the influence they've had on us.
Sounds simple, right? Sounds like something we should do every day - pick up the phone when a colleague calls, thank the guy at the front desk for sprucing up the flowers, take a break from the routine, and mosey on down to the cafeteria to ask the newest trainee if they are, indeed, superb.
In honor of the people who shape you, then, in honor of the Yasicks and this disease, perhaps you'll consider getting a pair of red pants and going off to the job in such fine form - or even instituting a formal Red Pants day.
If someone who has earned your gratitude asks you what's going on with your fashionable self, remember to say thanks. Then tell the story of Mike Yasick and this rare disease, which his daughter Emma and her sister, Katy, and their mother, Jennifer, are, through their foundation, DEFY (www.defy-foundation.org), determined, with classic Yasick kindness, to obliterate.
Beth Kephart blogs at www.beth-kephart.blogspot.com.