Every year for the last 16 years or so, I’ve been driving to Asbury Park, N.J. in January.
Jersey in January. It’s not exactly a warm weather escape but it is home to an inspirational weekend called Light of Day Winterfest; a music-based charity that raises money to support Parkinson’s patients, to facilitate treatments, and hopefully to find a cure.
This year, for the first time since COVID cancelled everything, I’m not going.
As Ginette and I drove home from Light of Day last year, we could feel the tide of darkness rising up in our wake. It was inauguration day, and as we listened to the news and got closer and closer to the Canadian border, I could hear the door creaking shut behind us. We were leaving a country that had, despite a preponderance of evidence, elected a corrupt criminal. How could we feel safe or valued in a country like that? We were filled with questions and contradictions.
Our friends, the musicians, and the men and women suffering from Parkinson’s, they all felt the same. Were we going to leave them to deal with it all by themselves? Would Light of Day survive without the international support that has meant so much to the cause throughout the years?
Over the next few months, we debated our return, but with each horrific action by Trump, the decision moved from uncertain to ironclad. We could not possibly support a country whose administration jailed children, invaded its own cities, and waged economic war on Canada.
From that point forward, we haven’t really wavered, except once, when our friend Emily reminded us to simply think of the people that surround and support this cause.
To say love is in the air during Light of Day sounds cliched or cheesy but it’s the truth. You can’t walk into a bar or restaurant in Asbury Park during that January weekend without running an affectionate gauntlet of hugs and I-love-you’s. This continues, day and night, over four days at dozens of venues. By Monday morning when we’re ready to go home, we are already committed to the next year, and the year after that, and to as many times as it takes, in the words of the great Willi Nile, “to kick Parkinson’s ass.”
In many respects, giving up those personal connections is the most soul-destroying side-effect of staying home but losing out on the music is a gut punch too. I’ve seen literally thousands of concerts and if I was to rank all the shows I’ve seen over the last 50 years, at least three of the top ten happened during Light of Day.
One would have to be Joe D’Urso’s runaway train performance of “Rockin’ in the Free World” in 2017. It was transformational. Less than a year removed from losing his friend and bandmate Lou “Mr. Lou” DeMartino, Joe flew out from behind the curtain with an international cast of supporting musicians and gave us all a moment to remember.
Two is Luca Guenna’s performance in 2014. He burst open the heart of everyone in the room that day. He started by apologizing for his Parkinson’s tremors while holding up a photo of Elvis, pointing to the photo, and asking if he could sing a song “by his teacher.” What followed was a version of “My Way” that started in pin-drop silence and ended in an ovation that shook the rafters; a joyous noise that belied the tear-stained faces of every person in the audience. Luca’s voice was note-perfect from beginning to end, including reaching that Elvis-inspired high note at the end.
Third would be Bruce Springsteen singing Thunder Road with a theatre full of people as a birthday gift to his friend Bob Benjamin. Bob started Light of Day after he was diagnosed with Parkinson’s at 38 years old. On this particular night, he stood up from his wheelchair for the last time to sing beside Bruce. It was more than moving; it was awe-inspiring.
As I write these words and I relive these moments my heart breaks and the tears are relentless. To know that something as untouchable as Light of Day has been marred by the orange felon is devastating but every person has a breaking point. He attacked our country, he threatened our lives, our livelihood and our economic survival. He is openly racist and full of hate. He cozies up to the dictators and fascists that every other nation denounces. He acts without thought, without humanity and without a shred of decency. How can I spend thousands of dollars in a country that supports him and attacks me and mine? It’s as simple as it is tragic. I can’t.