Fall is on its way and I could not be happier. I won’t need to spend as much money running my air conditioner, my college reunion is around the corner, and it is just a few weeks until the Greater Philadelphia Walk to Defeat ALS®. This event is special not just because of the thousands of people who will get together for a good cause, but also because my parents will travel all the way from Pittsburgh to be a part of it.
Every day at The ALS Association Greater Philadelphia Chapter, I see stories of people making their own journey with Lou Gehrig’s Disease. The one thing I see over and over is that nobody goes through it alone. As my friend Frank said to me when we went to Washington for ALS Advocacy Day, “when I was diagnosed, it didn’t just affect me, it affected my entire family of over 20 people.” So while the Greater Philadelphia Chapter talks about caring for over 850 people with ALS, the truth is, the extended network of people we support reaches into the thousands.
The same is true in my family. When my grandfather, Regis Heyl, was diagnosed with ALS in 2005, it did not just affect his legs, it affected a wide network of family and friends. When you face a difficult challenge in life, you learn just how many friends you really have in life, and sometimes that support can surprise you. Family, former coworkers, neighbors, and the people my grandpap saw every day at Bellisario’s, the restaurant my grandparents always ate at, all offered their kindness and assistance.
Not only do you learn how many people care about you when you face a challenge in life, you also learn the depth of that love. As I heard Michelle Obama say in her speech, “Power reveals.” Well, that isn’t just true for a President. It is also true when you have the power to help.
So when my grandparents faced challenges that nobody can ever be fully prepared for, I learned a lot about someone important in my life: my father. Every day, my dad would stop by their house on the way home from work and see how his dad was doing. I don’t mean that figuratively. Literally almost every single day, my dad would go see how my grandfather was doing physically and how my grandma was doing as well. Like Frank said, nobody goes through this alone.
Even when my grandfather moved into a nursing facility, my dad would visit nearly every day. He’d clip his toenails and bring him some water, but mostly he gave his time. They wouldn’t say much as my grandfather had trouble speaking then, but that wasn’t the point. What mattered was that when my grandpap just needed someone to care about him, my dad was there.
As a child, your parents seem like totally different people. As a teenager, they can seem downright alien. When you are an adult though, and you see the kinds of people they really are, it puts everything in a different light. My dad became more like superman when he was spending ten minutes sitting with my grandfather while he struggled with ALS than he did at any other time in my life.
My grandfather passed away in 2007, but now we can continue carrying on that same compassion for others living with ALS. We created the Rege’s Rockstars team for the Greater Philadelphia Walk to Defeat ALS® and you can support us in memory of my grandfather.
Growing up, my dad didn’t teach me how to change the oil in my car. He didn’t teach me a lot of things actually. What he did teach me, through his example as a caregiver, was how to be a human being and, hopefully a good son, husband, and, one day, father. I still have a lot to learn, but together, as a team working to defeat ALS, I’m looking forward to it.