From the List of ALS Ironies
“Kick the Bucket”
verb, meaning: to die
Etymology: unknown, theories date it as old as the 16th century
1,300,000: # of Google search results
noun, meaning: a list of things one would like to do before they die
Etymology: title of a 2007 movie by Justin Zackham
91,300,000: # of Google search results
As mentioned, when I first tell folks I have ALS, 99% of initial responses approximate:
I can’t imagine what you are going through! If there’s anything at all that I can help with, please let me know!
After that, the conversations can vary greatly, but another idea that many people are inclined to bring up is: The Bucket List.
However well-meaning, in my quieter, alone moments, I often reflect on this and it kinda bugs me on numerous levels.
- This phrase, coined by a screenwriter a mere 12 years ago, has become a ubiquitous topic in end-of-life discussions. (Common Bucket List Items, Journal of Palliative Medicine, Vol. 21, No. 5, May 1, 2018.)
- It strikes me as inherently regressive, for a great many Bucket List items are likely financially out of reach for a great many people.
- I found my initial thought on creating a Bucket List, once it was suggested to me post-diagnosis, was that it seemed like an exercise in wasteful self-indulgence, especially given the fact that Laurel was due to lose my income stream, my employer-provided medical and dental insurance, and out-of-pocket expenses for my care as I declined would be significant.
- But most painfully, if I could get past the other issues, most of my Bucket List items are simply out of the question due to my now extremely limited physical ability. I mean, being able to eat whatever I want, watch all the movies and read all the books I want, go to sleep and go to bed whenever the hell I want, none of those things come anywhere close to trekking the El Camino de Santiago de Compostela, hiking in the Himalayas, or kayaking in Glacier Bay National Park.
Fuck the bucket.
P.S. Ok, I admit it, I did indulge in one Bucket List-ish thing…
In August 2019, I was scanning through my Twitter feed, when I came upon this:
No, not a 10K or marathon, but rather shows by surviving members of the Grateful Dead, at my old stomping grounds, Madison Square Garden, the place where the biggest names in Rock ‘n’ Roll guided my inner music Devotee to become fully self-actualized, in the city where I discovered seemingly inexhaustible wonders of history, culture, the arts, AND, Julian’s birthday is Halloween, AND he’s never been to New York, OR to a Grateful Dead show!
I immediately sent the tweet to my fellow Deadhead buddy, Keith, who works in Manhattan, not far from Madison Square Garden, and the following discussion occurred:
Mind you, Keith’s monosyllabic answers are his shtick. Translation:
I require absolutely no convincing. Count me in!
The trip nearly didn’t happen…
A cross-country flight can be grueling in the best of health. With ALS, which occasionally causes 2-3 days in a row of nearly incapacitating fatigue, as excited as I was about traveling with Julian, seeing my friend, and attending what could be my last Dead show, I paid the added fee for refundable tickets.
Two days before we were due to depart, my wife said, “It doesn’t matter if you don’t feel good. You’ll never recover from not going.
Highlights of the Trip
- Julian was an awesome travel companion and sherpa, pushing me in the wheelchair through airports and New York City.
- Being back in New Jersey for the first time in over a decade, over thirty years since I moved to the west coast, was surreal. Everything felt simultaneously familiar and totally alien to me. Seeing my family, and providing them the opportunity to see me and Julian, was a very good thing, and they were very kind and generous hosts.
- The day of the show, my Uncle drove us into Manhattan, stopping for a view of the city from the Jersey side of the Hudson River, and then onward, under the river through the Lincoln Tunnel, emerging into an all-out assault on the senses. Our hotel, directly across from Madison Square Garden, was a mere four blocks east and about six blocks south, but it took us nearly an hour thanks to dense traffic and interminable one-way streets. We were dropped off hurriedly, goodbyes were rushed, and this was still just the beginning.
- Immediately, tie-dye and Deadheads were EVERYWHERE, wandering the streets, loitering in front of the hotel, in long lines in the lobby. Despite the jarring intensity of the city, despite being in a wheelchair, the jagged edges were softened by the smiles and playful loving energy of this community of people I feel so at home with.
- Julian and I checked in, dropped our stuff in our room, and headed to a bar/restaurant across the street. It was filled entirely by Deadheads, a cacophony of color, and on the many TV screens the Dead & Company show from the previous night — Halloween, Julian’s birthday — played, the perfect way to start the evening.
- Keith and his daughter Olivia arrived and we made our way to the Garden, through a sea of people, Julian pushing me along, the sea parting to allow us through, hands reaching out for high-fives from both sides. Shouts of anticipation, howls of joy, a busker singing Ripple, dozens of people with one finger in the air, hoping by some miracle that someone might have an extra ticket.
- The show was magical — full of memories and sing-alongs, incredible musicianship, and characteristic spontaneous surprises — but the most magical thing was being there with my friend Keith and our “kids.” I knew Julian would never name the Grateful Dead as his favorite music, but that was not in any way the point. The joy was in the sharing together something that meant so much to me, and seeing that he genuinely appreciated that and the peaceful vibe of the scene.
- The next morning we met for breakfast at a great bagel joint, made our way to Grand Central Station, hopped on a northbound train, wound our way along the Hudson, surrounded by rolling hills of autumn color, and disembarked at a small station, in a quite town, a soothing salve more reminiscent of our home in the Pacific Northwest.
- Two more days of friendship, New York-style pizza, a drive to a neighboring town, rock climbing for Julian at a gym, craft beer at a brewery by the river, a hired car to the airport, and we flew home. Precious, precious time.