all night last night
lingers unto morning
like sweet tears
to begin this day anew
I did not grow up in a culture of sweet tears, the kind that flow gently down the cheek, as plainly and innocently as a smirk might linger while contemplating someone’s clever retort. In truth, I learned to withhold smirks and tears at all cost, until I became a dad.
Dad tears are sweet tears. Dad tears are Holy Tears.
I rarely withhold tears anymore.
Last week I found myself in Howard Goodkin’s office with Peggy and William. Howard is the chair of neurology at the University of Virginia. He is also a child neurologist with whom I have shared many complicated patients. Howard invited us to join him and the leaders of the ALS Dart Center of Excellence to explore the possibility of a partnership with the Hummingbird Fund.
It is worth mentioning here that Howard is also the person I emailed when Peggy and I first seriously suspected a diagnosis of ALS. We were lost, adrift, so I emailed Howard. He called my cell before I could get up from the computer.
A couple of months later, at the Hummingbird launch, Howard joined a dozen colleagues, friends and family as a docent, mingling with guests, wearing his docent’s badge that read, “ASK ME ANYTHING.” He was terrific.
All of this history sat silently in the back of my mind as I calmly entered Howard’s office and took a seat at the familiar, long oak table, much like I had done many times before while working at UVA.
We began with introductions and roles, going around the table, ending with me.
As I began to recount my diagnosis, and the journey which has led to the Hummingbird Fund, tears began to roll down my cheeks. I was surprised by the tears, and I smiled at Howard who was sitting at the other end of the table. I said, “Well Howard, this is the first time I’ve cried in your office.”
Everyone chuckled quietly, and without missing a beat, Howard said, “Well Jim, it’s not the first time someone has cried in this office. Many people have cried in this office, including me.”
More soft chuckling… followed by a brief, intimate silence… followed by me having a moment to regain my grounding as a man with ALS, in a room full of people who know Mr. ALS all too well. The group moved on through our agenda, and we will have a meaningful partnership.
I am learning that tears and ALS are pretty much kissing cousins. Fury, deep disappointment, grief, and heartbreak. This community also weeps for the fearlessness, dignity, and brazen honesty of our kin. The road forward is a road through tears. Holy tears of love and courage.