My son William experienced his first pilgrimage walking the Camino de Santiago, the summer of his freshman year at The College of William and Mary. His professor and future mentor George Greenia led the pilgrimage. George has since become a family friend, and William has become our family’s maestro of pilgrimage, beginning with his sister, and then with his parents on the Camino. We have learned from George and now from William that no pilgrimage, and no pilgrim is alike, though there are common elements that define a pilgrimage:
- a beginning and an end,
- movement along the route,
- liminality in (holiness) space and time,
- the experience of beauty/awe/wonder,
- a rhythm to life,
- and perhaps a big question.
Pilgrimage at life’s transitions proves exceptionally meaningful.
Such was the case for each of us on the Camino de Santiago,
Such is the case for William and me now, traversing the glorious California coast in my cousin’s Porche Boxster, at the launch of life and advocacy with ALS.
William is a currently a second-year law student at Columbia. He has a full and varied life in New York City. I’m pleased for him. I’m his dad, after all, and these successes and his happiness make me proud and happy. So, his invitation to drive me along the California Coast during his spring break, on the eve of my launch into ALS, was welcomed as an offering of great kindness and love. To be clear, he gets to drive my cousin’s Porche Boxster Convertible with the top down along the Pacific Coast Highway. AND, to be clear, I’m in the seat right beside him, for holy hours, in liminal time, along the awe-inspiring coastal roadway. Any parent knows, and EVERY pediatrician knows that any hope of an intimate conversation comes during a captive car ride. This has not been lost on William, to be sure. In a profound way, our roles have been blissfully reversed, and I am a gleeful captive.
Reasonable people, who know me well-enough have asked, post-ALS diagnosis, how it is that I am taking care of myself. It’s a fair question, and one that needs asking. Having ALS requires daily and rigorous care-taking. I swallow handfuls of pills every day, and pay close attention to diet, rest, and physical activity. Trust me, I’m totally into it.
These same people, I suspect, also want to know how it is that I am caring for the deeper parts of my self. How am I taking care of my soul, now that I am facing down the complete disability and eventual demise of ALS? Also a worthy question that bears asking.
Regarding this, I have early data to report from the pilgrimage.
Proximity to love and kindness begets trust in love and kindness.
The meaning of pilgrimage comes from the doing of the pilgrimage.
Abiding in liminality, with intention and an open heart, ready to embrace awe, wonder, and beauty creates a grand opportunity for meaning-making. It’s the most natural way I know of to care for the soul.
The path of love and kindness, and this on-going pilgrimage may be our best hope to make meaning out of the tribulations of ALS.
As William said in the first hours after we received the formal diagnosis of ALS, after the tears, and shock had settled,
“Well then, I guess it’s time to get turbo-charged.”
Amen son. Let’s go!