A good friend this morning posted this photo of the Lafayette Hillside Memorial on his Facebook page. I assume as part of his personal observance of Memorial Day. But whatever the underlying motive for sharing the picture, I’m grateful he did because it touched off some recollections for me.
If you aren’t familiar with it, some quick context. The hillside you’re looking at here sits directly across from the parking lot of the Lafayette BART station, directly facing around 1.3 million riders a year as they arrive to access trains.
The first few dozen crosses were planted on the hillside in November 2006 along with a sign indicating they were a symbolic memorial for the then 2867 US troops killed in Iraq. As you might expect, the display sparked knee jerk outrage from certain “patriots” who wanted BART, or the City and County, or somebody to Do Something about this “offensive display.”
The controversy, of course, led regional (and eventually national) news coverage and I had seen stories, so I was aware of the project. Relatively quickly, city officials ruled the hillside a Memorial” under the language of a city ordinance which exempts memorials and historic markers from regulations limiting placement and size of commercial signage.
Thus the installation was assured some official protection. Around the same time all this was developing, for some reason I don’t now recall, I found myself up in the vicinity “on business,” and decided to take the opportunity to see for myself.
As I drove into the BART parking lot it was late morning, so the commute rush was over. Virtually no one was in evidence that I could see. It was a cold, grey, drizzly morning.
At the time of my visit, the hillside held not more than a few dozen simple, white-painted wooden crosses along with a sign displaying the actual tally of the dead. They were still all crosses then—I’m aware a certain number of Crescents and Stars of David have since joined the gathered markers.
Those crosses, scattered seemingly at random over the green hillside spoke powerfully. Alone in the damp parking lot, I was taken by surprise by the wash of emotions I felt break over me.
Although the Hillside Memorial was created, and continues to be maintained and tended by committed peace activists from the area, there has been, over time, an evolution of the dominant public perception of the project. Most locals, at least seem to have come to understand that objections to the policies and politicians that lead us into the conflicts in the early part of this century do NOT equate to disrespect for those whose lives are lost.
A number of the markers on the hill have been “adoped” by families mourning a personal loss, decorated with photos or other mementos to honor their fallen one.
And it has become the custom for formal gatherings to be held at the site, with a broad base of community participation. The same sort of observance, on a “hometown” scale, that we customarily see at National Cemeteries and other more formalized memorial sites. The schedule for a Memorial Day vigil held this afternoon, taken from the Hillside Memorial website, offers an unsurprising mix of speakers, music, poetry, local elected officials and faith leaders.
I guess my point is something like this: Given that Memorial Day is that singular day on our calendars which we set aside to honor those who went, and did not return to us, I feel heartened, in this time when so much of our current state of affairs feels so dark, that members of a community who may have begun their journeys at very different places are still able to find their way to some common ground where they can join together for just a moment, albeit in shared grieving and loss.
This is the America it is worth working to save and perfect.
NOTE: The web site for the Lafayette Hillside Memorial has quite a bit of information about the memorial itself, how it continues to be maintained by volunteers, and more. You can find it here. https://www.lafayettehillsidememorial.org/
NOTE: I typed the first draft of this post on my phone while lying in bed around 9:30 this morning. I apologize it has taken me over 13 hours to get around to editing it and posting.
Like virtually all Americans of privilege my age, I grew up having been taught only a gauzy, feel-good myth about “The First Thanksgiving.”
In early adulthood (as I did with so much of the cultural container that came as standard for kids growing up white and male in the US in the 1950s and 60s) I moved away from the Norman Rockwell standard portrait of the holiday.
Instead, I came to redefine the day as an occasion to pause, reflect on my gratitude for the love and connections in my life, and celebrate these things with members of my family of choice and others dear to me.
That self-defined tradition was well established before I became fully aware (many years into my continuing education about the true backstory of my “heritage” in this “exceptional” country) of what a painful anniversary is observed on this day by many of my indigenous sisters and brothers.
By the time I began to realize that certain folks I considered close friends, who I loved and admired greatly, always politely but firmly declined invitations to our feasting, explaining they had another personal engagement that day, I was already well into the process of building my own self-defined customs, and was probably a little too self-centered to truly stop and ask for help in understanding what I didn’t know. [This story arc, I am sorry to say, describes so much of the privilege I’ve enjoyed all my life. But that’s a discussion for another day.]
To those reading this who count the fourth Thursday of November a National Day of Mourning I can only say: I see you. I respect you. I feel a tiny hint of the grief and sadness you must carry, and I have great shame and regret that my privilege rests on such a dark and evil history.
For me though, the tradition of gratitude must remain. Not for my material privilege, great though it is. But again, for the love and connections in my life.
Yoshimi and I have spent the better part of four decades now making a life together. And for most of that time, Thanksgiving Day represented a time to gather together the members of our Family of Choice, and others with whom we shared bonds of connection and affection around the biggest table we could find to spend an afternoon and early evening sharing company, love, and gratitude; for each other and for all the gifts, great and small, our lives bring us virtually every day.
There was a time, some years back now, when we were committed to opening our home and playing hosts to all manner of events and celebrations, be they Independence Day barbeques, New Years Eve and Superbowl parties, or gathering a dozen or so of us in the old Hugus Court media room for a communal viewing on the (then huge) 36″ TV and large speaker hi fi system of all 14 hours of the Transatlantic ‘Live Aid’ concerts (a very fond memory for me personally).
We always felt it was part of our compact with the universe to share our ‘blessings’ with an open hand.
And it truly was our experience that in the giving, we received far more, filling our hearts.
But over the years, we have let the events go, one by one, as the doing grew more difficult, for multiple reasons.
The Feast of Thanksgiving was the last. Not quite as long a guest list in recent years as it had been at one time (I think our “record” head count one year was somewhere north of two dozen), but there was always room at the table for that last minute stray or two we might discover had nowhere else to be.
We have held on to this tradition as the others organically fell away.
And it seems right to me that would be the case since this tradition in our house and hearts was expressly about celebrating the gifts of our love and connections.
However, I am sad to say that the days of great feasting are behind us now.
Our last Thanksgiving gathering was two years ago (and one beloved who was at our table then departed from us in 2020—Pam, your memory is cherished, and you are deeply missed).
Last year, of course, the whole world was in lockdown. The vaccine was still months away.
And as the time came ’round this year to begin making plans, Yoshimi and I both realized that we have aged out of the ability to handle the physical demands hosting a feast entails, even if, as we always have, we declare “potluck” and ask all who can to contribute something to the table.
We mutually agreed it is time for us to let this go. It’s just beyond our reach now.
If we, either of us, were a part of one of those large, blood related Families of Origin this would be the point at which the younger generation steps up to take on the mantle. “Starting this year, we’ll be having Thanksgiving at Mary and Bob’s house. It’s a reasonable drive for everyone, and they’ve got plenty of room there to host the whole gang.”
We would naturally slide into the role of elders, expected to show up and hang out in the living room keeping grandkids amused until time to eat.
But that’s not who we are. It’s always been Family of Choice, though that has from time to time included members of our Families of Origin.
At any rate, we find ourselves planning a little dinner for two here at home, and a sit down later to watch the first part of Peter Jackson’s Beatles project.
We’ve been invited to drop in at a beloved neighbor’s, which I expect we’ll do at some point for a few minutes.
All in all, a quiet, very different sort of Thanksgiving Day for us. A softer, more contemplative sort of holiday.
Of course, I mourn the loss of the gatherings which have been a central part of my annual calendar for most of my adult life.
And I must confess to a bit of resentment at the fact circumstances have deprived us of a final “sweet farewell” to the tradition.
“Not with a bang but a whimper,” as the poet said.
>>Aside: We did enjoy a mini-event of sorts this past weekend. Over the past year or so, four of us who initially connected on the Zoom machine for reasons too complicated and not relevant enough to spend time on here have been having “virtual coffee” together every Saturday morning.
This past Saturday my three coffee buddies, two of whom I’d never met in three dimensions, gathered themselves together from disparate locations around Northern and Central California and presented themselves here at the Red House for lunch in the warm November sun on our back patio. Nobody called it a “Thanksgiving gathering,” but it was, in microcosm, exactly that spirit of fellowship and love that has held the day at our annual Thursday feasts for so many years. And although we’ve hosted a couple small dinners for one or two local friends, it was the first time I’ve enjoyed this sort of physical proximity here at home with people I love since the Before Times.
So thank you my Rock Dropping compadres for bringing the party to us!<<
It’s a bit melancholy, I must admit, finding myself in what a friend of a friend has called ‘the short seasons of life.’
These days I seem to be living in an endless river of losses and departures as deaths, changes of circumstance, and evolutions of people, places, and things proceed apace.
It remains my job apparently to continue to find the beauty, the joy, the love, that moment that is embedded somewhere in each day I’m granted the opportunity to participate in.
And that’s not a bad job at all when you think about it.
So, for those who mourn today, my heart is with you. For those who celebrate, I join you in gratitude and express my profound thanks for each of you these words reach, and the part you play, have played, or will play in the arc of my life.
I first met Jerilyn Brandelius when she came to San Francisco from Southern California in, I think, 1969. Someone (she told me once, but I forget who) introduced her to Chet Helms who was, of course, in dire need of a personal assistant/factotum to ensure follow up and follow through on all manner of business items, and keep the office on track and focused.
This was right around the time Chet had acquired the lease on the old Beach Pavilion building out on the Great Highway, across the road from Kellys Cove and comfortably tucked between Playland at the Beach and Sutro Heights.
In the weeks before we opened, as we got the building ready to do service to Chester’s vision of creating a space somewhere in between a dance hall and house of worship where people, music, lights, the Pacific Ocean could all come together and create magic(k), I had managed to find enough ways to be useful to create a full-time job for myself as Head Hey–You. Did everything from take tickets at the door, to help with stage managing and sound, to cleaning out perennially clogging toilets in the restrooms and sweeping and waxing the dance floor after shows.
So, Jere and I were “work colleagues.” But of course, when you worked for Chet Helms, it was never “just a job.” We were all “family.” Mates in that same ongoing effort to help Chet create something special that might lead—well, who knew where? And I learned things about who I wanted to be in life, and made connections with people that would endure over the years (even when we found ourselves out of contact for decades).
Jerilyn was one of those people. I loved her to the bottom of my heart then, and always have. And she WAS one that I lost contact with for many years. After the Family Dog on the Great Highway went under, I moved on to work for several bands, one of the Bay Area’s few (at the time) sound reinforcement companies that had the equipment and knowledge to work rock and roll shows, and several clubs and other music venues.
She, meanwhile, ended up in Marin County in a relationship with a musician from a well-known band, and got focused on raising her two kids, along with a tribe of other children associated with the “family” that surrounded that band—Oh, I’ll go ahead and say it. It is somewhat integral to the story, and no secret. After the Family Dog family broke up, she was absorbed into that vast amoeba which was the Grateful Dead family in the 1970s.
One of the reasons that becomes important at this point is that part of the legacy she leaves is a whole second generation of “Dead kids,” now in their 40s and 50s, who grew up more or less as a free range pack of young ’uns airing it out across the acres of various ranches and other properties scattered across Northern Marin County. In many ways, Jerelyn had stepped up into the role of fierce mama bear, not just for Creek and Christina, her two children, but for all the kids rattling around. More than one has told me that growing up in that somewhat ‘fluid’ scene, they always felt secure in the knowledge they could seek out Jere for her counsel and guidance; or just to have their backs. She became in some respects the most reliable adult in their world.
We didn’t have much occasion to connect, unless we happened to run into each other backstage at a show. While she had gone North, I had elected, post Dog, to remain in San Francisco and dig in to the more urban scene there.
Eventually I dropped out of the music business and moved down to Santa Cruz County, losing touch with her completely.
I later learned that after her relationship with that band member went the way of so many rock and roll pairings in that era where a good looking guy spent much of his time on the road being the center of the party while his “old lady” kept the home fires burning, Jerelyn easily transitioned into an office manager role for an East Bay chapter of the Hells Angels MC.
Because she was just that centered and secure in being Jerelyn Brandelius that there was never any doubt about her competency to take care of the myriad threads of necessary bank account management, tax reporting, regulatory compliance, and all the other things a fraternal organization that size is accountable for—especially one that’s a highly visible target for every investigator and prosecutor out to make a name for himself.
Of course, despite the fact her romantic relationship had gone south, her ties to the Dead Family always remained strong. The relationship held value for her, and for them, and she could be found around band (and family) related events right until the end.
Jerelyn’s profile in the broader universe of Deadheads exploded after the publication in late 1989 of the Grateful Dead Family Album, a massive coffee table book with cover art by iconic San Francisco artist Stanley Mouse offering almost 250 pages of photographs, many of them behind-the-scenes candids shot by Jerelyn, accompanied by text of her reminiscences and often droll observations on the scene over the years.
But I’m getting too buried in the biographical minutia here. I need to circle back to how it is that she rests so deep in my heart, a half-century on from our first association.
I guess it was maybe 15 years or so ago that a young friend of mine from down here in Santa Cruz County—a second-generation Deadhead if you will, phoned me filled with excitement after a trip to the Bay Area for a show.
Seems he’s been manning the Wharf Rats table (a subset of Deadheads in drug and alcohol recovery) when Jerilyn stopped by. He’d heard me tell tales of our history when he’d gushed about the Family Album book, and he mentioned to her that he knew me.
Remember that, at this point, we’d probably been out of touch for a couple of decades. Well, she was apparently excited to reconnect, giving him her phone number to pass along to me. So the kid came home feeling like a minor rock star.
That’s how we finally got back in touch, so many years later. We managed to get together a few times over the next couple of years, but I wasn’t at a time in my life when I was getting to the City much and she only occasionally came south, usually to support friends playing a gig somewhere in the Santa Cruz area.
Then the damned liver thing happened. Among other qualifying hoops they make liver transplant candidates jump through is a requirement they abstain from alcohol and drugs. I was able to add my voice to others from within the family in assuring her there is, indeed, life after recovery. That doing this deal clean and sober actually turns out, in a lot of ways, to be the most colorful trip of all.
Scared the hell out of me when word came she was going in for her transplant; I’d had a few other friends receive organ transplants and knew, at least in a general way, what a major deal it was. Of course, if I allowed myself to feel concerned, I wasn’t reckoning with just what a badass Jerilyn has always been.
As expected, it was a long, difficult, post-transplant recovery period. But sooner than you’d think we were making the pilgrimage North, groping around Ft. Baker in the dark, trying to find the Presidio Yacht Club. Once we finally stumbled in, we found the place packed with folks, both famous and obscure, there to celebrate Jerilyn’s first return from the dead.
In recent years, it’s become easier to keep in touch with the rise of social media. And, as my life focus shifted, I began to make it up to San Francisco a bit more often.
As it turned out, liver failure couldn’t hold a candle to the next gut punch the universe had lined up. In January of 2014, Jere’s daughter Christina (who I’d had the opportunity to amuse from time to time in the Family Dog days when she would hit that fussy spot little kids do when they really need some attention—just at the same moment her mom was engaged in an important long distance phone call nailing down next week’s booking) died far too young, succumbing to an asthma attack.
Possessing the terrible qualifier of having walked through the death of an adult child with my spouse, I like to believe I was able to be there for her in a way few others could be. We didn’t spend a ton of time together, and there wasn’t a lot of conversation. But our connection deepened in a way that’s beyond my ability to find words for.
This past half-dozen years or so, we stayed in consistent touch even though the 90 miles or so that separated us meant we still didn’t manage to get in the same place at the same time more than maybe three or four times a year.
But I believe there remained a level of love and connection between us that continued to deepen, without the need to speak of it, on each and every occasion we spent some time together, whether she had drafted me for chauffeur duty, giving her a ride to or from a gig someplace or we turned up at the same soiree—more often than not one of the legendary get togethers at Chez Grabien, where the company, the food, and the music were always exceptional.
We could usually manage to get ourselves off to the side someplace for a while where we could just sit and share space and unspoken history. Might be 15 minutes; might be a couple of hours. Usually, little was said once the initial check-in business was out of the way. How’s your health? What are you listening to lately?
For several years, there would be the obligatory quick catchup on John Perry Barlow (songwriting partner with Bob Weir, and later in life the visionary who birthed the Electronic Frontier Foundation); she was principally responsible for his caretaking over several years at the end of his life.
Because, you see, that was a thing Jerilyn did. I think I mentioned her being the rock at the center of the world of a whole generation of Dead family kids. She did the same thing for Barlow. She had also spent a period of time back working for Chet Helms again in what turned out (to everyone’s surprise) to be the last few years of his life.
Jerilyn was fierce. Fiercely loyal. Fiercely protective. Fiercely supportive of those she loved. And if one of hers was in trouble she was there to hold steady with them in the storm.
Of course, that fierceness meant she could also be a world-class pain in the ass when she was fighting for something. That could, on occasion, rub ‘outsiders’ the wrong way. And, if I’m totally honest, it would on occasion drive those who loved her up the wall as well.
But it was never born of malice, always passion.
After her stroke a couple years back, Jerilyn once more pulled out all that fight and determination. It pissed her off no end to find herself physically compromised, and she threw herself into all the recommended physical therapy, dietary guidelines, and lifestyle recommendations (at least as best she could make them fit her world) to regain a huge percentage of her capacity.
I think she fatigued quicker. And I’m sure (though we never discussed it in detail) she was finding herself carrying a greater and greater pain load on a daily basis. Hell, we all live with chronic pain at this age; especially those of us who ran our bodies so hard when we were young and heedless.
But, as somebody pointed out the other day, there was a part of Jerilyn that never fully came back after Christina died. There never is really, is there? The death of a child cuts a chunk out of a mother that can’t be healed or filled in. And she loved as fiercely as any mother I’ve ever known.
It’s funny. There’s that word again. Fierce. Absolutely, Jerilyn was one of the most badass, determined women I have ever known. And she walked through enough shit for any three people in her life, with her head up all the way. So, yeah. Fierce.
And yet all my memories of her are tender, sweet, infused with love. No, we didn’t spend a lot of time together. We never had, really. But she has been a part of my life since the earliest days working for Chet, when I was beginning to figure out who I was going to grow up to be. How I would carry myself in this world.
So, going forward from here for as long as I remain, I’ll carry myself in a world now missing one of the touchstones of my life. We were never married; we were never lovers. I don’t think we ever even intentionally got high together. Dosed at a few of the same shows, I’m sure. But that hardly counts around that rolling circus.
I am grateful that the closest inner circles of family were able to be there as her body wound down and her spirit departed. I know that Betty was there. I understand Weir was able to come and sing her home as the machines stopped and it all finished.
I am going to miss the hell out of her. I already do. This has been such a bastard of a year, for everyone. I suppose it even makes a certain amount of sense that this would be when Jerilyn finally reached that point where she had to lay her hammer down.
I will get my head wrapped around accepting it, same as all the rest of this year. Because we have to, don’t we? But I don’t goddamn like it. And I shall, indeed, feel her absence the rest of my days.
“Fare you well. Fare you well. I love you more than words can tell.”
Plans are in the works for a virtual gathering on line to celebrate the life and memory of Jerilyn. I will post an update here, and on my Facebook page when details become available.
Been quite a long time since I wrote anything here (and apologies for that—my bandwidth is limited these days) but last weekend I turned 70 years of age and it does not seem right to let that pass without comment.
“Last weekend I turned 70.” That is a statement I never expected to make. Even aside from the cancer, given my family history, the ways in which I beat the crap out of my body for most of my life, and my lengthy laundry list of chronic maladies, it doesn’t make a lot of sense that I’m still here.
And yet, I still am. So, what to make of that?
One of the great benefits of receiving the “upgrade” of my cancer to Stage Four in July of 2017 has been the opportunities for growth and contemplation finding myself in the position of “dead man walking” has afforded me.
Of course, I have no way of knowing how I’d feel about passing this milestone absent that terminal prognosis because that’s not what has occurred. But what has happened is that I have enjoyed damned near two and a half years of “grace” now, in which I’ve been spurred to consider my upcoming mortality and review the arc of my life story with a clarity and focus many folks don’t have the chance to experience.
And now, we add to the mix that “big number.” I’ve never before been one who takes much note of birthdays. At least not since my adolescence when I, like all my peers, dealt with a succession of artificially designated “qualifying ages.”
16 to get a driver’s license, with the independence and freedom of movement that go with that for a kid who lives beyond the bus lines; 18 to register for the draft and seriously start to figure out what the hell to do personally about a war I’d been protesting and resisting for three or four years by then; 21 to finally be able to cast a ballot. [Oh, yeah, at 21 I could legally buy a drink too. Although, at the time, my focus was much more directed at things that were prohibited at any age.]
So, yeah. Over the years I’ve watched friends do all kinds of freaking out when they hit 30 (remember “don’t trust anybody over 30”?), 40, 50, 60. But for me, it’s always been sort of “meh.” Well, maybe 50 a little bit as I found my internal monolog cranking out phrases like “entering my second half-century.” But even that was more a case of “hmmm, well that’s interesting” than anything else.
I think when I hit those earlier so-called milestones there was more a sense of accomplishment for having gotten this far than anything else. But this seems to be playing out very differently for me.
Trying to unpack it, I think a lot of it probably does have to do with the fact that I’ve been in “dead man walking” mode for a couple of years now. And that brings with it a couple of things.
The first is, quite simply, surprise that I am indeed still alive. When I first got the official word that I’d been upgraded to Stage Four and that “this is only going to end one way,” I asked the oncologist for her best guess, for planning purposes, on roughly how much time I could expect before the dank bastard shows up to tap me on the shoulder.
She said typically a year or two. She gave me that framework in July of 2017. That’s two and a half years ago. And although my baseline daily “how ya feeling” is certainly crappier than it was then, I’m not feeling anywhere close to completely spent yet. So here I remain, well past my ‘sell-by’ date, with a reasonable expectation I’ll still be breathing in and out when I wake up in the morning.
So that’s a piece of it. All of the above, and now I’m seventy god damn years old to boot? Day-em wouldja look at that!
I suspect the other reason this turning 70 deal has caught my attention also has to do with the fact that I’m working my way through this “final season” of my life.
Bear with me, I want to talk a little about what processing my somewhat impending demise has meant for me.
Start here. I am not a man of faith. I may well be, in some respects, “spiritual,” I’m probably not the best judge of that. But I don’t follow a religious path (I have no quarrel with those who do—matter of fact I regard many of them with deep admiration and respect). It’s just never been a comfortable fit for me, and I’ve tried several different belief systems on for size over the years. Thus, I don’t enjoy a sense of self that promises a continuity beyond death, let alone what that might look/feel like. So, no expectations.
Now, most of my life I’d have gladly told you that, if I get a vote, my preference would default toward being completely surprised by some unanticipated immediate interruption—an unfortunate encounter with a speeding truck, perhaps.
Thing is, in the event, I’ve found this extended final glide path to be an unimagined luxury. [Demonstrating yet again that I rarely seem to know what’s actually best for me.]
For one thing, this interregnum has afforded me an extended opportunity to review and contemplate the life I’ve had. And while I have had to navigate my share of difficult situations (many of them of my own making) any reasonable observer would have to say I have been exceptionally fortunate throughout my life.
I’ve enjoyed the opportunity to be associated with a remarkable number of very special individuals. Talented artists and musicians, passionate and generous leaders of many, many types, dear friends who have loved, sustained and taught me so very much.
I have lived my life almost exclusively in locations that are among the most beautiful on the planet, more often than not in communities populated with caring and responsible people.
I’ve had employment, across several professional tracks throughout my working life that has almost always provided dignified, ethical, and fulfilling work, usually with bosses and peers I could respect and whose company I enjoyed.
Speaking of “good company,” it seems life has also brought me a wonderful collection of true friends—folks I care about deeply and who seem to reciprocate the feeling. More people than I can begin to count, a significant number of them folks who have been a part of my life for decades.
Despite the odd moments of friction here and there, I enjoy loving, solid, and respectful relationships with three generations of family members.
All this barely scratches the surface, but you take my point, I hope. The opportunity to “review the record” this past couple of years makes me inexpressibly grateful for the life I’ve lived, making this unexpected opportunity to celebrate a 70th birthday a special moment, indeed.
At this point in the journey, I find myself surprisingly openhearted. I am deeply moved by the triumphs and disappointments, the joys and grieving of those around me. And that ability to be touched by what’s up with you is something to cherish as well.
I’m an alcoholic and drug addict who has now been living in recovery for more than half my life. When I first found my way into sobriety, I was damaged in many, many ways. Among them was my belief, based on self-observation, that I just was incapable of truly connecting with my fellow humans. I felt like the emotional equivalent of a driver who’s involved in a bad accident, totals the car, but walks away with just a few scratches—not truly impacted by what just occurred. I was convinced I had just been built without the wiring circuits that created the ability to truly care about others.
But in this “second act” of my life, the half spent in recovery, it turns out that’s not the case at all.
No, it turns out that there is nothing in my life more important to me than the connections I feel to all around me. The natural beauty of the world we live in, the opportunities each day brings to experience things—those new and revelatory as well as the familiar with the pleasure and satisfaction it brings. And especially the relationships with my fellow humans.
It turns out that I see my job at this point as planting, nurturing, fostering the Love anywhere and everywhere I can (and each day is filled for opportunities to do that).
It turns out that I’m not just capable of connecting with others, it’s what I do best, and the most important work in my life.
So, happy birthday to me. I’m 70 fer crissakes. Sure did not expect that.
“When you come to a fork in the road take it.” —Yogi Berra
So, we seem to have arrived. At the next fork in my road. Let me explain.
Most of you know I’ve been living with cancer for the better part of the past two decades, and have reached the point it’s going to take me out sooner, not later. That, in part was the impetus for launching this blog.
Not meant to be a long, heart-tugging, “this is my journey through cancer until the end” project. That’s been done. By better reporters than I. More than once. No, this exists as my shot at downloading whatever experience and wisdom I may have gleaned through the life I have been privileged to enjoy. A life, in my modest estimation, that has been more scenic than many folks get a shot at.
But to the point of this update. This is a bit of a medical bulletin, because the ground has shifted. First, some context for those who need it. This will all be old news to many readers. If you’d like, you can skip past these paragraphs of back story and jump to the news of the day here.
If you have been following along in your books, you’ll perhaps recall that back in the summer of ’17 I got the news that the prostate cancer I’ve been living with for damned near 20 years was on the move again, and I was being graduated to the Big Boys Table.
Due to the doubling rate of my PSA numbers (tech talk for the blood work that gives the medicos a clue about the level of activity and aggression of prostate cancer cell mutations in the male body), Kaiser health care removed me from the care of the urologist who’d been administering my care the past several years since the cancer woke up again. classified me as Stage Four, and assigned me to an oncologist.
She ordered a series of full body scans to get a sense of where we were at, and in our initial meeting, laid out my “new normal.”
In July or August of last year:
There was no evidence of cancer developing at “remote sites.” In other words, we couldn’t see any spread of the disease yet.
She adjusted my medication profile, adding a second hormone suppressant drug (seems that hormones, especially testosterone, are freakin’ Happy Meals for prostate cancer cells) which, she explained, “works well for some folks, and not at all for others.”
The bad news (other than some nagging, but not quality of life destroying side effects) was that, if it did prove effective for me it would eventually stop working.
She also explained that, though each case is unique, she would expect metastasis in 12 to 18 months. [Note: Some time later, as I appeared to be responding well to my new med, she recast that projection to 18 to 24 months.]
Once the cancer cells—clever little fellows that they are—mutated themselves enough to overcome the lack of hormones in my body and began rapidly replicating, the most likely avenues for their spread would be into my bones or lymph system. Sometimes other internal organs become involved (the most difficult treatment challenge), but the first two are more common.
When the cancer begins to present deeper into my body, there would be further escalation of treatment options to discuss, with the caveat that all those would be about buying some time. We aren’t looking at “curing” anything here.
OK. For any who needed ’em, those are the nuts and bolts of context here.
If you follow me on Facebook, you’re likely aware I spent most of last Friday in the tender hands of a succession of Kaiser Permanente techs in San Jose for nose to toes CT and bone scans.
I wasn’t terribly concerned. Best I can tell, my overall physical condition hasn’t changed radically recently. Oh, I’m tired a lot, but that’s a listed side effect of one of my meds, and besides I’m old.
Chronic aches and pains all over the place, but see above.
And, based on the performance of my PSA numbers, this seemed to be more of a “routine check to be sure we’re not missing anything” than an “uh-oh, we better take a closer look at see what the hell this is about” test order.
Right. Quit noodling and dive in, Ace.
Finally got the update phone call from Dr. Jhatakia last night. As she put it, “it isn’t great news, but it’s not drastic news either.” Which, in today’s world, is a pretty good day.
The deal is this:
The scans are showing a “small lesion” (about 0.8 cm) on my left pelvic bone. It’s new. Wasn’t there in the last scans. Which would seem to indicate the cancer has established a toehold in my bones (bad news) but is not very far advanced yet (good news). Other than that, no indication of other weirdness. Lymph system, internal organs, and the rest of my skeletal structure show no signs of being compromised at this point (yay!).
Thus, pretty much right on schedule, we have the first indications of metastasis.
We have some different treatment approaches to consider now and, given the early days of the spread, the luxury of taking a little time to make our decisions.
We can stick with the current course of treatment; with the periodic Lupron injections and daily oral dose of bicalutamide (Casodex®). As the doc finished outlining the scan results I, jumping ahead as I am wont to do sometimes, tossed this one out with a casual “so, we hold course and watch and wait?”
Her response was a less-than-enthusiastic “weeeell, we could do that, and take another set of scans in four months to see where we are.”
She also tossed two additional options on the table. Each has its own positives and negatives. Both involve continuing the Lupron injections, and replacing the bicalutamide daily oral does with another, related, therapy. I’ve got some research to do, but here’s a rough recap of what the oncologist told me.
The first option is enzalutamide (Xtandi®). Side effects on this guy are similar to the ones I’ve been dealing with from the bicalutamide (fatigue, bone and muscle aches, fluid retention) with a couple of unpleasant “added attractions.” Apparently it can cause some cognitive impairment (oh, swell!) so it’s recommended that it be taken at bedtime—because, I guess, who needs cognition when they’re sleeping?
Oh. Almost forgot. In about one percent of patients, the drug can spark seizures. Obviously, an outcome I’d like to avoid.
The other unpleasant side effect from this guy is cost. Apparently, even on Medicare we’re looking at several grand a year. Gulp.
She did indicate our income may be low enough for us to qualify for something called Medical Financial Assistance. I’m unclear if this is a Kaiser-Permanente program, something sponsored by the drug company, or a government benefit of some sort. But if we can get it, boom! No copay. She’s going to have staff mail me some paperwork.
The other possibility she raises is a drug called abiraterone (Zytiga®), another second-line treatment for men who’s cancer has become resistant to androgen (hormone) therapy. But (of course—aren’t there always?) there are “issues” here as well.
Perhaps most important, in my case, is that it needs to be administered in tandem with prednisone, a steroid with its own unhappy symphony of side effects. Probably most significant for me would be weakening of the bones (increasing risk of fractures) and the fact it often plays havoc with blood sugar—not a good thing for diabetics.
So, dem is Da Fax, Ma’am. As you can see, there are going to be some high stakes decisions to make over the next few weeks. It’s worth noting, I suppose, that all paths ahead ultimately lead to the destination. And it appears I have still have a bit more of a hike before I arrive there.
But this most surely was the next significant milestone on the journey. We knew this next turn was coming up, and here it is.
I, of course, “have some feels” about the news of my new normal, in addition to some decisions to make. I won’t be digging into them here because (a) that deserves an essay all its own and (b) frankly, I’m not sure what they are yet.
Think of me today as that little beach ball that spins round and round on your screen when you’re machine is trying to load something or open an complex file.
[A note to my international friends: For you, today is Thursday (unless it’s already Friday where you are), an ordinary week day. Here in the United States, today is the designated national holiday known as “Thanksgiving”. Thank you for your patience.]
For many of my Native American and First Nations friends, the fourth Thursday in November is observed as a day to remember the dark legacy of colonialism, conquest, subjugation and genocide that lies across the face of this continent.
Aside: If you’re not as familiar with the actual origin story of our modern Thanksgiving customs, won’t you join me over here for a quick review? Go ahead. I’ll wait here.
OK, we’re back.
Those of you who gathered at dawn today on Alcatraz, or elsewhere, to honor ancestors, build solidarity, support each other, and find renewed strength, I acknowledge you with respect and love. I also acknowledge the almost certain fact that some of my ancestors were at least complicit, if not active participants in some of that sad legacy. I wish it were not so, but it is. I can only do my best to be better.
My privilege though, has brought me to this moment by a different path, thus my practices on this day are different as well.
One last thought though, before I move on from this part of discussion the day. As a sympathetic observer, and one who has aspired to be a good “ally” since long before the term was coined, I’d like to note that I’ve seen an evolution in the tone, tenor, and presentation of Indian activism in recent years and, to my eyes, that represents positive development in several ways.
I’ve been around since the days of the Alcatraz Occupation, and before. It has been my privilege to watch, at least in the Bay Area, the birth and early coalescing of the Red Power movement. In later decades, it seemed the focus turned more inward, with an emphasis on the urgent work of relearning language, core cultural activities, and spiritual/religious practices before they were lost forever as elders, often the last holders of these memories, left this life.
And along with that work came the task of developing alliances and interconnection between Nations who may have, at times not always seen each other as friends.
Now, in researching this piece on line, I’ve come to realize that the impatient young people with their urgency and sense that they were often, quite literally, fighting for their lives have become today’s elders. And there is a new generation of leaders emerging with the heart and skills to take the movement to the next level, and present it in the context of today’s media environment in a fashion that strives to address continuing issues of oppression while leveraging a new type of academic interest in tribal history, an ingrained understanding of the peril to human survival the excesses of the dominant culture have created, and a level of dignity, pride, and self-worth which had been almost drained away from earlier generations by over a century of systematic oppression, exploitation, and cultural colonialism.
Today’s emerging leaders begin their work from a place much further along than that which was available to their parents and grandparents. Thus we can hope the work of their lives will have impacts we can’t even foresee from here.
All of which is by way of acknowledging the fact that, for certain folks, this day is informally known as Unthanksgiving, and the last thing they have in mind is gathering around a dinner table to eat overcooked poultry in commemoration of what, in many ways, was no more and no less than the time-released invasion, theft and, in many respects, destruction of their land by a hostile and aggressive foreign horde. I honor and respect that, and would not be so arrogant as to offer counsel on whether that best serves. I can’t know what I don’t know.
By accident of birth, however, my experience is different.
Like many Americans, I grew up spoon fed the post-war idealization of “the good life” which included an expectation of warm and fuzzy gathering of loving family to give thanks for our privilege and bounty. And this was somehow all wrapped up in a blanket of patriotism, entitlement, and expectation of the manifestation of some fictional, misty, satisfied gathering rooted in a shared appreciation of fine home cookin’ (somehow magically manifested in the kitchen by the womenfolk while the men did manly things like watch football and chat about plans and expectations for the upcoming holiday season).
Of course, like so many of my generation, things never quite played out that way in our alcohol soaked home. Bonnie (wife and mother) was not a terribly talented “natural-born cook” at the best of times; for her the work was all about finding recipes that either looked good, or appeared to match someone’s fond childhood recollections, and trying to follow them to the letter with regard to ingredients, timing, and presentation.
Not the most relaxed way to approach the kitchen under any circumstances, and when overlain with the crushing weight of holiday expectations (and recreational alcohol consumption that began earlier and ran heavier than it did on “normal” days) the ballet of timing multiple dishes to reach their prime simultaneously, her stress level and performance anxiety would rise exponentially. Which virtually guaranteed an unfortunate outcome.
I’m coming the long way ’round here to get to: I don’t have terribly fond memories of Holiday Feasting from my childhood. And thus, I’ve felt no compunction to try to duplicate those painful afternoons and evenings in my adult life. Imagine my delight when I discovered I had managed to join up with a life partner of similar bent.
However it has also been true for quite a long time that my feeling of connectedness with fellow humans, and the nexus of love we share, is central to how I understand myself and my proper place in the world; in my life.
Thus, over the years, Yoshimi and I have found ourselves establishing a “family tradition” of a different sort, around this holiday in particular.
Neither of us adhere to a formal faith tradition, so we’re not committed to any of the various celebrations of various deities that dot the calendar (I saw an assertion somewhere the other day that December and January actually contain a grand total of at least 52 different observances focused on different reputed “birthdays,” holy days, or astronomical events such as solstice—so much for your “War on Christmas).
So, a day that’s set aside to gather with loved ones (we like to think of them as our “family of choice,” thus differentiated from our “family of origin”—though there certainly is overlap) to contemplate and celebrate the many, many things for which we are grateful emerged as the natural holiday for us.
Over the years, we have mounted gatherings with as many as a couple dozen people; as we have aged the effort grew more daunting, and many of the folks who had previously filled seats at the table moved on to other commitments. But there is always “Thanksgiving with Ace and Yoshimi” as a known thing.
This year, circumstances have lead to a further evolution. Not sure I’m completely happy about it, but it is what it is and I embrace it. In getting ready to put these thoughts together, I went back, as best as the architecture of the site allows, and retrieved some things I’ve written for Facebook in previous years.
I found this “day after” rumination from last year, and thought it worth revisiting here. I’ll explain why on the other side.
FRIDAY, NOVEMBER 24, 2017
Notes from the wreckage:
~ I realize we say this every year, but I believe this truly was, in many ways, our finest holiday gathering ever.
~ As always, I look forward warmly to a succession of comfort meal favorites on the menu in coming days. Hot turkey sandwiches with gravy. Turkey soup. Ham and scalloped potatoes. (Side note: Christ, there’s a lot of left over mashed potatoes this year for some reason. Recipes incorporating same glady accepted.)
~ I thought my “no politics today” rule worked out reasonably well as a tool for setting our anxieties aside for the day. And who came closest to violating it as the evening wore on? Yup. Moi.
~ I’m not sure what possessed Yoshimi to elect to bring out the Good China and crystal glassware for the first time in a number of years but, even though it meant more handwashing after, it was a nice, luxuriant touch, and I’m glad we did it.
~ Good mix of old friends and new this year. That was a joy. And thanks, by the way, to everyone who pitched in side dishes for the feasting. Damn, but we do get to live well.
~ It is so VERY much worth it, but I gotta admit there’s a lot of physical work involved in mounting this kind of feast, especially for us old farts. Man, I’m beat up this morning (and “ma in her kerchief” is still sleeping soundly). I wouldn’t have missed it for the world, but I do have to own the costs. Which leads me, finally, to…
~Damn, but I’m grateful I don’t drink any more. It struck me a little bit ago as I stumbled through brewing the cats and feeding the coffee that I’m pretty sure if I laid a hangover in on top of this I’d be praying for a swift and merciful death about now.
Happy Day After, all. If you’re going out among ’em (or, gods love ya, if you have to work retail) today, be careful out there.
I had no idea when I wrote that, that 2017 would be the final year we hosted Thanksgiving Dinner in our home of 16 years.
But, for a number of reasons, it’s time to move on from here. We’ll be setting up housekeeping in a new location in January. Initially, we considered “one last farewell feast” here. This home has meant a lot. I’ve realized as we’ve contemplated and planned this transition, that I have lived here longer than any other place in my life. And the same is true for Yoshimi. Ultimately though, it just felt too overwhelming to take that route.
Once again though, we are drenched in gifts beyond all deserving. A dear friend has invited us to combine our dinner with hers. We’re sharing the cooking, and an abbreviated guest list. Yoshimi and I have done significant pre-baking here (our friend is wrangling side dishes) and we will load up the turkey, the dressing, and the ham in a few minutes and head over there. It will, I am sure, be a different but still filling (in so many ways) afternoon.
Know that, as always, I carry you in my heart and you’ll be right next to me at the table.
Wherever you are, and whatever your dance card features this day, you are wrapped in Love. And ultimately, I am convinced to my core, this is all about the Love.
As these things so often seem to do, this begins with the fact that everything we were taught about the origins and backstory of the Thanksgiving holiday was just so much gauzy mythology, with only the most tenuous of connections to historic reality.
All that lovely “Squanto give corn” stuff, and the thing about how the Pilgrims were so grateful for their first bountiful harvest that they invited their indigenous neighbors over for a four day extravaganza of of celebration, feasting, and fellowship? Yeah, no. Not the way it came down at all.
If you’re interested (and IMNSHO you should be), there’s a straightforward and accessible interview with Ramona Peters, of the Mashpee Wampanoag Tribe that the folks at Indian Country Today put up last year. I strongly recommend it.
So, how did we get from the somewhat gritty reality of two radically dissimilar cultures carefully finding their way toward what, at least for a time, appeared to be a mutually useful alliance to the national day of food, football, and family we observe today? The answer (and this’ll surprise you, I know) apparently lies in politics.
A number of Commentators and Deep Thinkers of late—and I’ll wear it, I am often among them—tend to View With Alarm the lack of civility and respect in the public square as we debate issues of the day, and the coarseness of our discourse, often going so far as to wonder if the Republic can survive and regain her role of leadership in global affairs.
But it’s worth recalling that our Great Experiment has survived severe tests before. 1863: The nation was literally torn asunder by a shooting war, the stakes of which were the direction, and very survival of the Republic as a sovereign country. In the midst of that chaos, President Lincoln faced the dual challenges of identifying and empowering military officers of sufficient skill and abilities to turn around a war that was, frankly, going badly, while attempting to provide the sort of intangible leadership and inspiration needed to keep his citizens committed to staying the course and supporting the Union.
And, of course, he dealt with the influential media powerhouses of the day, each with their own agendas to pursue and circulation numbers to boost. Among them was a woman called Sarah Josepha Hale, editor of a popular women’s magazine of the day, who had campaigned for year for the establishment of a national observance of thanksgiving.
Realizing the potential as a unifying theme, Lincoln issued a Presidential Proclamation establishing the day:
Washington, D.C. October 3, 1863
By the President of the United States A Proclamation
The year that is drawing toward its close has been filled with the blessings of fruitful fields and healthful skies. To these bounties, which are so constantly enjoyed that we are prone to forget the source from which they come, others have been added, which are of so extraordinary a nature that they cannot fail to penetrate and soften the heart which is habitually insensible to the ever-watchful providence of Almighty God.
In the midst of a civil war of unequaled magnitude and severity, which has sometimes seemed to foreign states to invite and provoke their aggressions, peace has been preserved with all nations, order has been maintained, the laws have been respected and obeyed, and harmony has prevailed everywhere, except in the theater of military conflict; while that theater has been greatly contracted by the advancing armies and navies of the Union.
Needful diversions of wealth and of strength from the fields of peaceful industry to the national defense have not arrested the plow, the shuttle, or the ship; the ax has enlarged the borders of our settlements, and the mines, as well of iron and coal as of the precious metals, have yielded even more abundantly than heretofore. Population has steadily increased, notwithstanding the waste that has been made in the camp, the siege, and the battlefield, and the country, rejoicing in the consciousness of augmented strength and vigor, is permitted to expect continuance of years with large increase of freedom.
No human counsel hath devised, nor hath any mortal hand worked out these great things. They are the gracious gifts of the Most High God, who while dealing with us in anger for our sins, hath nevertheless remembered mercy.
It has seemed to me fit and proper that they should be solemnly, reverently, and gratefully acknowledged as with one heart and one voice by the whole American people. I do, therefore, invite my fellow-citizens in every part of the United States, and also those who are at sea and those who are sojourning in foreign lands, to set apart and observe the last Thursday of November next as a Day of Thanksgiving and Praise to our beneficent Father who dwelleth in the heavens. And I recommend to them that, while offering up the ascriptions justly due to Him for such singular deliverances and blessings, they do also, with humble penitence for our national perverseness and disobedience, commend to His tender care all those who have become widows, orphans, mourners, or sufferers in the lamentable civil strife in which we are unavoidably engaged, and fervently implore the interposition of the Almighty hand to heal the wounds of the nation, and to restore it, as soon as may be consistent with the Divine purposes, to the full enjoyment of peace, harmony, tranquility, and union.
In testimony whereof, I have hereunto set my hand and caused the seal of the United Stated States to be affixed.
Done at the city of Washington, this third day of October, in the year of our Lord one thousand eight hundred and sixty-three, and of the Independence of the United States the eighty-eighth.
By the President: Abraham Lincoln
William H. Seward, Secretary of State
And over the intervening decades, as we are wont to do, we collectively built up and embellished an origin story more reflective of a sanitized, Disneyesque fantasy world than the gritty, brutal, often morally ambiguous (at best) actual facts that undergird the creation of this “exceptional land” we enjoy today.
I’m not at all sure we do well to avert our eyes from “how the sausage was made.” I would suggest we, and the country, are better served when we honestly confront the hard truths, acknowledge the many ways we’ve failed to apply the ideals we espouse across the board, and commit to doing better.
I don’t believe such a position in any way precludes our pausing to contemplate and celebrate the many things we have to be grateful for. That’s my plan for the day. I wish you well with yours.
Not your run-of-the-mill sort of fear; the kind we all get that kinda sounds like “oh, I don’t think this ends well,” or “I think I really screwed this up.”
But way down to your bones Scared AF fear.
I think I’ve broken through and am confronting the inevitability of my situation on a whole new level. However, as we so often do, I’m investing the fear not in what I know, but what I don’t know.
It’s not the going over the edge into the abyss so much that has me freaked. Nor even the prospect of standing at the edge and looking into that abyss.
It’s the anticipation of being dragged over the rocks on the way to that edge that has me trying to climb out of my skin.
So much is unclear about just how this is going to play out. Where the cancer elected to set up camp once it metastasizes. How much pain that brings; how physically or mentally debilitated I’ll be. What the chemo options might look like, and whether they’ll seem worth the fight.
And yet this is all, ALL of it, just stuff I’m making up in my head at this point. We’re not there yet. Today is today. There is much important work to be done, that I can still do.
I know that this mindset is a trap of my own devising, and I need to make the decision, take the action, to step away from it and get on with the tasks of the day.
And I shall, given another cuppa or two and some space to recenter myself. This is the first time though since I was upgraded to Stage 4 that I woke up like this. And it seemed like I ought to memorialize it.
I’ve been pretty clear all along with everyone about my general feelings about all this. I have enjoyed a remarkable run, and I am grateful for it. As I like to say, I’ve been “playing with house money” for quite a while now.
And, somewhat to my surprise, I’ve also found myself to be deeply grateful for the “advance notice” of my pending offramp. My entire life, my baseline assumption was always “I hope I just get hit by a bus one day, so I don’t have to put any thought into what end of life means.”
But, in the event, it turns out I actually have found this interim period to be extremely useful. Not in terms of “delaying the inevitable,” rather that it’s providing me room for reflection, some opportunities to savor, a chance to do what I can to clean up things I’m responsible for and position myself to end my run as gracefully as possible. And how lucky am I to get that chance? Very lucky indeed, I’d say.
And yet; and yet. I woke up this morning immersed in fear. Deep, to the bone fear about how the rest of this plays out. That in the face of how terribly fortunate I have been to date. Not least in that I know, to the depths of my core, that I love and am loved (not by all, but by more than a few—and all out of scale to anything earned or deserved).
So there it is. It’s an authentic feeling. I hereby mark it, own it, and choose to get on with the tasks of the day.
I’m about as far from the target demographic for Demi Lovato’s music as a person can be. Hell, I’m old enough to be her grandpa; been clean and sober longer than she’s been alive.
To be honest, I’d never heard of her until her highly publicized overdose this week. But when the news broke, it didn’t take long for me to learn who she is. And it took even less time for the ignorance and judgment to rear its head on social media.
Twitter and Facebook were awash in comments on threads about the news. People expressing anger and disappointment at her “choice” to relapse. Arguing that the “disease concept” is exculpatory claptrap aimed at absolving bad actors of responsibility for their behaviors and decisions.
You’d think by now I’d be used to it. Every damned time there’s a high profile “slip” by someone battling personal demons whose life is chronically documented by paparazzi and the ghouls at TMZ and all its imitators, the chorus begins again.
A part of this has nothing to do with alcoholism and drug addiction.* It’s really more about the whole social context of our “celebrity culture.” In our instant-access internet and social media fueled environment today, I think the dysfunction has grown more extreme. But I saw it when I worked in the music business almost a half century ago.
Consumers (or “fans,” if you will) find themselves touched in some way by a personality; their performance, their persona, their perceived lifestyle, whatever. And they bestow on these folks a degree of admiration, affection, and perceived personal connection that may be barely, if at all, tethered to reality.
This isn’t necessarily unhealthy in itself. One thinks of the devotion that hormone-intoxicated adolescent girls of my generation bestowed on the Beatles, for instance. For most, it was a bonding, coming-of-age experience that eased their transitions from childhood towards adult life.
But somewhere there’s a tipping point towards unhealthy obsession, in some cases an almost stalker-like sense of “ownership” of the object of their affections. This can create dangerous, sometimes self-destructive behavior by the obsessed. And also creates serious potential pitfalls for the target celebrities.
This is why a significant part of the work for support staff who surround performers, in addition to facilitating technical aspects of a show, is about insulating the artist from the public. Egalitarian ideals notwithstanding, there’s just too strong an element of unpredictability involved. Some performers like to flirt with this side of the live event dynamic, but things can go sideways in a hurry if that “walk on the dark side” isn’t carefully managed (the Rolling Stones’ Altamont concert being the most well known example of how things can go terribly wrong).
But I’m drifting off point. Sorry.
One of the other ugly components of our culture’s dynamic around celebrity is how quickly that affection and adulation can sour when one of the “privileged” falls short of the public’s expectations. Whether it’s sports fans’ often vehement dissatisfaction with a star athlete whose performance fails to win the day, or the expressed outrage when a favorite actor, known for their heartwarming performances, is revealed to be an absolute shit to crew members or their family, public perceptions can flip in a heartbeat. This is exactly why the massive corporations that earn billions from marketing entertainment to the crowd employ entire subsections of their publicity departments devoted to managing negative press.
I’ve gone a long way ’round the park to say that I think this is part of what underlies some of the hostile, often uninformed reaction when a celebrity, especially one who has very publically (thanks, in part to those same damned PR flacks) confessed their sins and “gone into rehab” before. We gave ’em their damned Second Chance already. What the hell here?
C’mon, people who’ve achieved this level of celebrity enjoy a level of pampering and privilege unimaginable to most of us! The clothes, the cars, the special treatment. They should be appropriately grateful and humble. They should act right, dammit.
So, to be sure some of the venom that greets news of an overdose, a fatality, a DUI arrest, or other addiction-related mishap is a natural element of the whole love-hate celebrity thing.
But, in my experience, a lot of it remains a creature of the basic misconceptions that float around out there. And I really want to spend some time on that; more time than one can spend in a Twitter thread or Facebook note.
I guess I’ve lived a fairly insulated life the past three decades or so. My spouse worked in the treatment field for many years. I’m in my 38th year of continuous sobriety. The majority of my closest friends are also in recovery—and those who aren’t themselves, and have known me long enough, are damned glad that I am.
So I’m always taken aback at the public reaction to a high-profile overdose or other public and visible derailment of a personality who has declared themselves to be in recovery. The most recent example before this week that comes to mind was the death of Phil Hoffman, but we see it happen over and over again.
Once the news breaks, the clattering and chattering on social media begins almost immediately. And by now, it’s a pretty familiar pattern. Someone will pass a comment about how “sad” it is (and yes, indeed it is) that so-and-so lost the thread of maintaining their recovery, and the floodgates immediately open.
We hear from fans who are angry; pissed off that someone they perhaps admired has “chosen” to get high again; condemnation of their “selfishness” and lack of consideration for family, loved ones, and public followers.
Much backing and forthing ensues, with some folks (usually either people in recovery or parents and others who have direct experience with an addict in their lives) pleading for understanding—reminding others that addiction is a disease. A surprising number of folks will snap back, flatly denying the disease model of understanding addiction and insisting that’s just a rationalization to avoid taking responsibility for one’s actions.
By the way, probably worth noting here that, though this may sound contradictory to the uninitiated, understanding addiction as a disease in no way absolves or excuses the addict from the responsibility or consequences of their behaviors, decisions, and activities. One of the most important central tenets of virtually all treatment/recovery models of which I am aware is the exercise of identifying, taking ownership of, and making amends for all the ways in which we’ve harmed others.
In my experience of over a half-century with alcohol and drugs and the people who use or abuse them, virtually no one deliberately sets out to become an alcoholic or addict. And understand this: somewhere in the neighborhood of 90% of those who use, either recreationally or medicinally, don’t develop the pathology.
But for that remaining tenth of us who just weren’t wired up like the rest of you, either biochemically or emotionally, it’s virtually impossible to step back once we’ve discovered the first thing in our lives that seems to make us feel whole and “normal.” By definition, if we were capable of making rational choices about whether the use of drugs or alcohol was a good idea for us, I think we’d likely fall somewhere within that other 90%—even if we have some history of excessive behavior, often when young.
It’s not my intention to spend a lot of time here laying out the scientific and medical arguments, that information is readily available if you’re interested. I want to talk about how it feels for those of us who share this affliction to encounter the levels of vehement judgment and ignorance that continue to exist, despite the much higher visibility addiction and recovery “enjoy” today.
It’s painful. It’s frustrating. Sometimes bewildering. And, despite the inclinations of many late night comedians, not goddamned funny in the slightest.
Look. I’m not asking people who aren’t alcoholic/addicts to somehow modify their behavior to accommodate the minority of us who are. That would be absurd. I guess my point here is to remind folks that feelings aren’t facts. And to point out that broad statements about how the dynamics of addiction work from folks who clearly do not know (a) can be hurtful and (b) for damned sure makes you look the fool to anyone with even a modicum of education or experience with those dynamics.
And, in a perfect world, I guess I’d like you to know that nobody—absolutely nobody is a harsher critic of that alcoholic/addict than they are. No one is more disappointed in, or frustrated with them.
There are few hellscapes more dark or bleak than the internal dialog going on inside the mind and heart of someone who truly ought to be clean and sober but just can’t seem to find the handle.
And know this, too. Far more addicts and alcoholics fail than succeed at this recovery deal. Somebody much wiser than I once said “it’s simple, but it ain’t easy.”
[Addendum: There’s a young man I’ve made “friends” with on the Twitter machine these past few months who sits at the complete other end of the arc of Life in Recovery from me. He’s just achieved the milestone of 9 months sobriety this week. He was moved to share some thoughts about our shared affliction as well, and I strongly recommend them. His name is Sam. His piece is up on Medium here.]
UPDATE: The news guy inside me insists on this followup note. Ms. Lovato has released a statement. Rolling Stone has her text in its entirety along with a brief story here.
*or other addictive behaviors such as compulsive gambling, eating disorders, etc.
Note: Fortunate Son, Part 2 is sitting half-written in my drafts folder. And there are, I suspect more installments to follow.”
This piece, I think, belongs much later in the Fortunate Son series, but for reasons which should, perhaps, be apparent it seemed necessary to “jump ahead” and get it down now.
When I woke up this morning, I realized I’d been dreaming, pretty extensively, about an old friend I’ve known since my earliest days in sobriety. She has always been one of the most dynamic, powerful women I’ve ever met.
But recently some serious health issues laid her low and she spent several weeks in hospital, many of those unconscious or only barely still connected here. I spent several afternoons, gowned up, sitting by her bedside holding her hand and whispering my love and respect in her ear—wasn’t sure for a while there if she’d be coming back or not.
I’m quite confident that if you had a chance to ask her Cora, like me, would tell you she is, on balance, pretty damned happy with how her life has played out. Her story is far, far different than mine, but it is one that lets her hold her head up.
And thinking about Cora after I awoke, my thoughts turned to the individual who actually first introduced me to recovery. I had met Cora through E, that’s what brought her to mind.
We stayed close for a time, I even turned out to be “that guy” who could step up in 1982, driving her back and forth from the San Lorenzo Valley to Packard Childrens Hospital at Stanford almost daily when her infant daughter was there for an extended period of time teetering on the edge of life. That was one of my first experiences in this Second Half of My Life with prioritizing being of service to someone else; putting their needs ahead of my own.
Eventually though, our paths drifted apart. A few years later, I learned E had returned to drinking, and was living a pretty limited and marginal life. Lost touch completely after that. I have no idea if she left the area, got sober again somewhere else, what? I know I never ran across her again, or heard rumors of her “in the rooms” around Santa Cruz County.
I don’t know if she’s still living. Perhaps she relocated, found her way back to sobriety in another community, and is living a contented life surrounded by grandkids. But it’s equally possible, perhaps even likely, that she died in her disease, taunted by the demons of alcoholism and the lies they whisper just inside our ears. I don’t know, and I won’t project on her.
Contemplating the possibilities though, especially looking at the contrast between Cora’s story and E’s, I had to confront the hard fact that many of us do not reach the end of our run here in a space where we can look at the arc of our time with a modicum of satisfaction and gratitude.
For too many folks, this journey is just a long, grinding, trek through a relentless vale of tears. I am truly, truly saddened that that’s the case.
And I realize yet again (a) how very goddamned lucky I am and (b) that I owe an ethical, even moral debt to those less fortunate. That I am bound both by love and duty to comprehend, acknowledge, and appreciate my good fortune.
I have not earned it, I am no more deserving of it than anyone else. I am profoundly grateful for it.