“Give me the roses while I live
Trying to cheer me on
Useless the flowers that you give
After the soul is gone”
A year to the day after my diagnosis I had the rare opportunity to attend my own funeral. It was one of the most amazing days of my life, made even more enjoyable by the fact that, strictly speaking, I wasn’t dead yet. And yet, I certainly wasn’t the same person. Many people did not recognize me. To this day old friends that I haven’t seen in a while will give me blank stares when I greet them. Of course, this is largely due to the hair or, more accurately, the lack of hair. I shaved for the surgery and have kept my tresses trim as a concession to the hearing device now mounted in my skull. But I’ve shed more than a coiffure in the last couple of years, and even setting aside the physical losses and changes – the deafness in my right ear, the balance issues, the fatigue and headaches – I don’t think it is overstating it to say that by January 7, 2017, a significant part of me had died.
Of course, we are changing all the time. This is true after dying as well as before. We have established certain markers to distinguish life and death and, as I say, strictly speaking, I wasn’t dead. But in nearly every other way it was a funeral. An acknowledgement of passing. A celebration of life. A coming together of friends. A nod to mortality. And underneath it all a mourning.
I am happy to say that my funeral was not held in a funeral home. It was held, with an oblivious nod to my Irish ancestry, in a bar. So, perhaps this was really more of a wake: a vigil held beside the body, which, in this case, was wandering around, greeting and chatting up the attendees. Having had the experience, I am inclined to suggest that a bar offers a much better venue for this sort of thing than a funeral home, or even a religious sanctuary. For one thing the ambience is nowhere near so stiff. And whether your intent is to celebrate, or mourn, or both, the tools for a proper go at it are readily at your disposal in any decent bar. Some will argue that the comfort and wisdom of the clergy are lacking in a bar. But whose fault is that? The clergy should loosen their collars and belly up. Transitions are not a time for stickling.
This particular bar – the Sawmill Saloon, in Seeley, Wisconsin – is a warren of rooms, salons, antechambers, businesses, beverages and board that is as close to The Prancing Pony as anything you’re likely to find this side of Middle Earth. The dueña, an inestimable woman of profound generosity named Cindy Ferraro, is not only kinder and sharper than Barliman Butterbur ever was, she’s much better looking. She oversees what is essentially the cultural hub of the neighborhood; a gathering place for thinkers, drinkers, skiers, fleers, the Miller mob and the micro-brew crew. It is and was, in short, the perfect location for a demonstration of largesse and support that I am not likely to see again in my lifetime. Because, in addition to being a funeral – or a wake, if you prefer – this was also a fundraiser.
Make no mistake, the Affordable Care Act saved my butt. It’s not perfect, but I would never have been able to afford the insurance that made my diagnosis and subsequent treatment possible if President Obama hadn’t made passage of that act a key part of his agenda. As I write these words politicians in Washington are doing their damndest to eviscerate the health care coverage that has literally saved my life. If you are one of those people that likes to get angry about politics, I can only ask you politely to get out of the ring until you’ve got some real skin in the game. Don’t even get me started.
As fortunate as I was to discover my tumor at such an opportune political moment, I have nevertheless been faced with what I call DFE, “Dire Financial Exigency”. For one thing, I haven’t been working for the last year and a half. That kind of thing can really put a kink in your ability to pay bills. Then there are the niggling little expenses that insurance doesn’t cover: the deductibles, the travel to see specialists, the lodging, the consultations with providers not covered… blah, blah, blah. The blahs add up.
But I am one lucky dude. I have an amazing assortment of magical friends – dear ones who have come to my rescue in just about every imaginable way. Their skills, thoughtfulness, and love have tethered my life to this mortal coil in ways that I had not known were possible. They’ve given me the time, space and support for the considerable recuperation I am currently embarked upon. They have given me instruction and succor as I’ve flailed my way through the webs of depression frustration and rage that swathe the scenery of my emotional landscape. And they made for me, that day in early 2017, a wake. And a fundraiser.
Those who were there can attest to the staggering rumpus of relentless talent that flaunted three music stages for nine solid hours. Living legends were walking the corridors: magicians and giants in their field. They were jamming, playing for dances, leading workshops and in general filling the establishment with so much music that the seams between the logs began to bulge and separate. Many people had to scrape notes off of their windshields before they could drive home.
Tables scattered throughout were filled with a cornucopia of riches donated by enough generous souls to populate a northern Wisconsin county. Artwork, jewelry, gifts, recordings, certificates, libations… As fast as they were won or auctioned off, more treasures would take their place.
And the friends! I wonder if you can imagine it. I couldn’t have before that Saturday. More than thirty years of old friends, and friends I hadn’t yet met. Friends – listening and walking and dancing across the groaning wood floors. Friends – in the rafters and the windows and the ventilation ducts. Friends, bidding and buying and chatting and drinking and eating. (Only later did I learn that several Japanese oshiya had been flown to Seeley to help pack the people in.) At every step I was embraced. Each time I turned around I was engulfed in a rising tide of caring and love.
Many, among those special friends, belonged to a tribe of survivors. They had weathered trials similar or, in many cases, darker than mine. Friends who had lost loved ones to cancer. Friends who had battled or were battling cancer themselves. And lovely Char. Char, who had received the same diagnosis as mine, but fifteen years earlier. Char, who had walked my road with me with an understanding that no one else had. Char was there with her reclusive husband, my Tai Chi teacher, Pat. Himself a cancer survivor. All, all at my wakening.
For years I battled chronic dizziness and fatigue not knowing the cause. In the last year and a half I’ve lost my hearing, and my career. The life that I spent years building lies shattered around me. But there, in that place, a year to the day after my diagnosis, I wakened to, not a cure, but a kind of transcendence.
“Full fathom five thy father lies,
Of his bones are coral made,
Those are pearls that were his eyes,
Nothing of him that doth fade,
But doth suffer a sea-change,
into something rich and strange”
And so I have become. I will never recover. I never want to.