I was at a fundraiser recently when I felt a gentle tap on my shoulder. I turned to find two tall young men standing there, one about six-foot-five and the other only slightly shorter. When they told me who they were, I was taken aback. I met them more than ten years prior, after their father had been diagnosed with ALS and didn’t know when or how to tell his boys about it. They were so young and innocent. Now here they were, grown up, one of them a college baseball pitcher, the other working in his chosen field, thankful for what CCALS had done for their family. I cannot imagine how proud their dad would be of them, were he alive to see what they had become.
What we have become…my, my. I ponder this myself, having reached the age this month of what many would consider a true elder, a man of 70. I can still see and feel the boy I once was—like those young men at the fundraiser—who would have never imagined what would turn out to be his calling when he grew up. He would never have guessed that an offer to become the driver of his boss at the catering company where he worked would have turned into an international organization devoted to caring for individuals and families living with ALS. If I could go back in time and tell that boy what was to be, I think he would have looked at me and said, “What’s ALS?”
Good question, Ronnie! What the heck is ALS? In the 84 years that have passed since Lou Gehrig was diagnosed with the disease that would take his name, we still don’t really know what it is—but we’re getting closer. We still haven’t got a clue about the why. The why. It can be mind numbing and heartbreaking. Who gets tapped on the shoulder by the uninvited guest is a profound mystery. So many absolutely fabulous people stricken out of the blue. By what? And for what reason? From my perspective, as the years have gone by, I’ve come to believe there is no reason, it’s just life.
So what we do at CCALS is wade into this unsolvable mystery of a disease that has a name but very little else. Research continues at a furious pace. More breakthroughs appear to be on the not too distant horizon, and we put all of our hopes and prayers into slowing it further, and eventually finding a cure. Until that day comes, though, somebody has to wade into the unsolvable mystery that is the here and now of that fateful day when a person leaves the neurologist’s office with the shocking and traumatic diagnosis—it’s ALS—and what do you do now? My hope is that you find us. Without delay you turn toward someone who will walk along beside you without hesitation, someone who cares in a gentle and stealthy way, in the best way that you don’t even feel like your being cared for! You’re hanging out with a new friend who has some helpful information and a medicine bag of useful tools, and a bit of useful wisdom. Good friend to have in a pinch.
That’s what I’ve tried to do in the 26 years since I became Gordon Heald’s driver, and then moved in as his full-time caregiver. That’s what I learned to do the first time I assisted Gordon up the stairs to go to the bathroom during a party at his home. You walk along with your friend. You don’t pull him along or push him this way or that. You get close and tune in. You listen with every fiber of your being. You listen without an agenda, without a selfish need to have the answer or provide the perfect fix.
Helping is one thing but being truly compassionate is quite another. Helping implies they need something that only I can provide. Compassion listens carefully, patiently letting the tale unfold, taking in the intangibles—body language, setting—letting the message reach soul level where intuition resides, noticing if there is a hunch, and sometime later, if time proves the hunch to be true, sharing it with your friend. Compassion is wondering what will truly serve. So often, the most useful caring is to simply bear witness and hold space. That shouldn’t be so hard to do, but for many, it is.
I call this the art of showing up. What we choose to say, how and when we say it, I call the art of language. This is what my 70 years has taught me about care…it is not a science. It is an art. Doing it well requires more than anything a great depth of curiosity. Preparing to care is a deep and continual inquiry. If we cannot face our own wounds, our pain, our mortality—those experiences we avoid from our past, then it will be very difficult for us to show up with an open heart and no agenda for others. To be a healer we’ve got to heal.
These past 26 years, as you can see in the graphic, have been a continual path of change, growth and finding new ways to bring improved programs to the families we serve. It’s been a commitment to learning, an eye towards getting better and better at what we do. I continue to be incredibly grateful to Gordon and Betsy Heald for being the catalyst of all that we do, the unfolding of what has come to be my life’s purpose. I am deeply grateful for the profound impact CCALS has had on the thousands and thousands of individuals and families we have served. Thank you, always, Gordon and Betsy. You live close to my heart and will never be forgotten.
I hope I can continue to be a calm and healing presence in the lives of those that I serve. To be of service is the greatest blessing one can receive. All of you, my friends, my families, my staff, my board, my dog Maddie—you are my teachers and give meaning to my life. I love you and bow to you.