Category: Personal Privilege

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Life Off World

Author Amy Ferris frequently posts personal ruminations in her Facebook account which touch my heart, and encourage me.

But Monday morning I woke up to one that felt exceptionally personal for me. I started to type a comment, but soon realized my post was growing far too long for a comment thread.

So, I switched gears, planning to repost her anecdote on my Facebook page, with a longish introduction.

Before too long though, as the words kept tumbling out, that ceased to be an option as well.

And thus, here I am. Dusting off this long underused blog site so I can unlimber all I have to say.

With Amy’s permission, let me begin by sharing her original post here. I’ll move on to my response down on the other side.

A lovely FB memory:

It started with a favor: could I drive him to the oncologist, he has a check-up, it’ll only be a half-hour at most, he asked.

Sure, I said, sure.

He is someone I have known for 26 years; a friend who I see at parties and dinner’s at his house or smaller dinner’s and smaller parties at other houses, and well, you can know someone 26 years and never have time alone with them.

We sat in my car for 45 minutes, on the way to the cancer center; me in the driver’s seat, he in the passenger seat and we caught up and got to know each other better.

So much I didn’t know.
So much I now know.
So much more I hope to know.

The waiting room was full of people. Old & young.
Women & men & children.
Folks who were just beginning treatment, folks who were in the midst of treatment, folks who had recurrences – young & old and white & black & brown and gay & straight and the nurse came out and asked for Amy and I raised my hand, and she told me that my friend needed an infusion, and would I mind waiting, because this kinda thing can take an hour or two or… of course, I said, of course I’ll wait for him, yes, tell him that, yes, sure. I’ll be right here when he comes out.

And I caught up on magazines that I no longer buy. People and Us and a slew of magazines I had no idea existed and the thing I noticed, that rocked me to my core, when I looked up from reading about famous people who I knew nothing about and now know so much about, the thing I noticed was how kind everyone was. Kind and generous and maybe it was a cupful, and maybe it was just a spoonful and maybe it was a teeny bit but kindness has hope in it – kindness is hope – and… here, sit here, she said as she stood up from her chair to offer it to a man with a walker who was looking for a place to sit, and the smile and the kiss that was returned when a man brought his wife or his girlfriend – someone he was sleeping with – a cup of water and the little girl whose hair was growing back and the older boy who gave her a thumbs up and the small frail woman who I know was younger than me but looked so much like my mother and… every fucking time I am sitting in a waiting room, which is so very often these days I feel like it is me who is waiting for a moment or two or three that brings humanity back to my life; restores it, offering up hope.

It is me who is waiting.

It happened at the coffee machine.

For the life of me I couldn’t get the machine to make cappuccino, and unlike the waiting room at Subaru or iKen’s surgeon’s office or other doctor’s offices, this machine was odd and strange and unfamiliar and twice I tried, twice, and… no foam, none, and it isn’t cappuccino without foam, it’s just plain fucking coffee and I huffed and I puffed and I was about to try one more time when … can I help, she asked. Can I help you? Maybe she was 15, maybe 16 years old. Maybe. Tall and lanky and pale as a ghost with braces on her teeth and yes, yes, you can help me, I said. Thank you so much. It’s my pleasure. And she made me a cappuccino and told me that the cup was hot, really really hot be careful, she said, and I thought my God… my God… here in this room filled with folks who have no idea how long they have, no idea how much time… this girl, this girl with braces and cancer gave me some of her time and I had no idea, none, when I honked the horn this morning to pick up my friend of 26 years who I now know a bit better than I did yesterday because in a car you can choose to be emotionally intimate in a way you can’t be with music blaring and people talking over each other and I had no idea, none what so ever, when I said yes that I was saying yes to something more than a favor, I said yes to hope.

We mustn’t lose hope.

Thank you, Amy.
Thank you for seeing us.

Not many folks who don’t belong to the Kancer Kidz Klub really can.

Oh, a lot of ’em care. And they try, they really do.
But they just don’t, maybe can’t, “get” us.

Cos we don’t live in the same world as you any more.
Oh, we’re not far away. Just over here.

Our world looks a lot like yours.
We do, or try to do, a lot of the same stuff you do—that we used to do.
But it’s different here. And if you don’t live here, you don’t know.

No, we aren’t all waiting to die.

Some of us are. And that’s okay. I mean, all humans do die, sooner or later. It’s just that some of us here have that official notice that our stop is coming up soon and we should gather our stuff.

But some of us are holding hope, and fighting like motherfuckers to get back over there to the old home world where you all are.

Oh, there’s a lot of stuff we have in common. Much of it wouldn’t sound unfamiliar to other folks back there who are dealing with aging, other debilitating diseases (be they exotic or commonplace), et cetera. Many folks back in the Home World also get the chance to experience extreme fatigue, random severe pain, our senses of taste, smell, sometimes others not working right.

There’s another thing all of us in the Klub have in common (and this kinda ties in with your experience when you gave you friend a ride to his appointment).

Waiting. We do a shit ton of waiting. Waiting to see the oncologist who is running behind because an earlier patient had a crisis. Waiting to see how the new bloodwork or scans came out. Waiting for the biopsy results. Waiting for the fucking infusion to be done. Waiting to see if they think they “got it all” after a surgery. Just a lot of waiting. And that can be extra frustrating if you’ve already been advised you’re on a short clock.

Oh, frustration. Shall we talk about feelings?

Yeah, frustration is one that’s always on offer.
Plenty of chances to feel frustrated; impatient.
Of course, those are terrific “opportunities for learning.” Because it is quickly apparent that setting up camp in that negativity isn’t going to accomplish fuck all. And it’s a toxic place to live. Not a good choice.
There’s already so much inescapable toxicity (one of the odd quirks of cancer treatment is that one of the basic principles seems to involve a delicate dance of slowly poisoning the patience within an inch of their lives in the hopes the cancer cells die off before the host body) that voluntarily choosing more pretty much doesn’t pencil out when you look at the cost – benefit balance.

What are some other pretty common feelings? Well, there’s hope (and I know that’s one that you’re fond of, Amy). A cancer diagnosis is certainly not always and inescapably terminal any more.

(Though it certainly CAN be – if there is any sort of “early detection” procedure you’ve been putting off because it seems yucky, or it might hurt, or there’s a copay. Stop. Just stop. Go make the fucking appointment. Get it done. We don’t WANT you over here in Kancer World if that can possibly be avoided.)

But I was talking about hope. There are certainly a lot of us in the Kancer Kids Klub who have been given to understand there’s every reason to expect we’ll come out the other side after a somewhat bumpy detour over here on the bad roads of Kancer World. And the dominant feelings for those Klub Members are pretty much hope and determination. Those folks step up, pull on their Fuck Cancer tee shirts and (for many) knit beanies over their newly hairless noggins and quite literally engage in daily battle. So they are feisty, determined and driven by hope. And the rest of us hold hope with them. They carry the torch for us all.

Confusion. There’s often a feeling of confusion; overwhelm. Especially for the newly diagnosed. Such a mass of complex, often technical information to take on board (along with well-meaning but useless input from friends who just feel compelled to tell you about their Aunt Ida who confounded her doctors after she went off to a private clinic in Minnesota and spent six months on a specially tailored diet of blender drinks made with 17 herbs known only to shamans in the ancient Celtic tradition and a secret blend of raw vegetables). So much to take on board at exactly that moment when your mind is still reeling from the emotional shock of hearing the “C-Word” and struggling to take in ANYTHING. Meanwhile, we’ve got to get up to speed on all this, because it’s going to be necessary for us to be the lead dogs in taking responsibility for our own medical advocacy.

I could continue, but I’m wearing myself out just typing all this. There is one other emotion that touches each of us. Some may admit it; articulate it more readily that others. But it touches all of us from time to time.

Fear. Any Kancer Kid who insists they are not visited at least by moments of fear and doubt is lying. Either to you or to themselves. Of course. It’s fucking scary over here in Kancer World. So many unknowns. Existentially unknown. And we in the Klub are well acquainted with our personal mortality. It’s up in our face 24/7.

So yes, Amy. What you noticed (careful noticer of things that you are) is dead on. We are all unique persons, and express ourselves as such. But if I was to generalize, I would offer this.

First, regardless of prognosis, being handed a cancer diagnosis does have a clarifying effect on one’s priorities. Seems that a lot of humans spend much of our lives pouring energy into things which, when you get right down to the bone, don’t really matter much. So, many of us find ourselves shifting our focus and reconsidering, given that our time in life is limited, just what we believe is important.

Also, I believe these common experiences have a tendency to tenderize the those of us in the Kancer Klub. This may manifest in different ways, but a lot of it seems to show up around how we take care of each other. Not so much the sweeping, magnificent gestures. But those little things. Being aware of who may need the seat worse (and, when that’s you, accepting the proffered courtesy and support with grace and gratitude—with respect for where it’s coming from); giving a stranger a hand with a balky vending machine; inviting that person juggling a dozen eggs, a half-gallon of milk, and a fussy child to go on ahead of you in the supermarket checkout line.

Sure, there are lots of folks who don’t live in Kancer World who go through their lives this way, and bless ‘em. The world needs more tender hearts. Badly.

But, I dunno. Members of the Klub, regardless of their politics, religious beliefs (or absence of), economic status, or cultural background just seem to have a baseline empathy quotient that’s a wee bit higher.

I don’t mean to suggest that “all us Kancer Kids are SPECIAL.” That’s a little self-centered, even for this old boomer.

I guess what I’m saying is that while we appear to be living right next to you, and be dealing with the same joys and challenges, there’s this thing that rather sets us aside just a degree or two. Most “regular folk” don’t even notice it and, if they do, even fewer know what to do with it; how to deal with us.

And you know? That’s really okay too.

Not just because, well, it has to be. But because, even though I live over here in Kancer World now (and, in my case, will apparently be living here until the day that Dark Bastard comes for me), like all of us, I originated on that same Home World as all you guys.

And in my younger years, I wasn’t really comfortable moving among the dead and dying either. With time, I like to think I got better, able to be there with a bit more ease and grace. But I do remember how hard it was; how clumsy I was at it.

And thus it’s such a treat—so validating—to feel like someone from the Home World; someone like the talented Amy Ferris (who has had, and has, her own mountains to climb and storms to weather) sees us. I mean, really SEES us.

So thank you for that.

 

A couple of notes before I go.

  • If you’re not familiar with her, Amy Ferris is not only an exceptional (and successful) screenwriter and novelist. She also devotes a lot of time and energy these days to encouraging others, especially women, to find their voices and share their stories.
    You can find her Amazon page for more.
    She’s also on social media. There is a Twitter account,  but she’s most active on Facebook. She uses that account almost like a mini-blog. It’s where I found the post that generated this response from me.
  • There is a small, private group on Facebook expressly to offer folks who have a cancer diagnosis a spot where we can talk strictly among ourselves about whatever we need, be it a request for experience and support, a need to vent with others also living in our strange land without worrying about rattling the civilians. No friends, loved ones, or caregivers. Just a few of us. It’s called The Kancer Kidz Koffee Klub and if you qualify by virtue of currently doing the Kancer Dance or having been a patient previously who has graduated you’re welcome to stop by and check us out.
  • Finally, it occurs to me that some of my remarks may have suggested a lack of respect for those we depend on for support. If so I apologize, for that is not my message. Almost without exception, my experience has been that all these folks are damned living saints. And a special word for the health care professionals who elect to work in oncology. There are a hell of a lot of jobs in medicine and care which demand a special balance of commitment, knowledge, and professionalism. But I am surprised and my heart is touched over and over by those special among special people who deal with us Kancer Kids.
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Thanksgiving 2021

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.

The Myth

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.

Painting by Karen Rinaldo, 1995

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.

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Remembering Jerilyn

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.

Photo: ©Ed Perlstein

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.

Photo: © Lilli Heart

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.

Photo: © Rosie McGee

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.

Deborah Grabien, Sam Cutler, Jerilyn Brandilius Photo: Holly Howard

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.”

Photo: © Rosie McGee

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.

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On Turning 70

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.

 

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As Advertised

“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.

Forward!

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Thanksgiving 2018: Reflections

[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.

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Got Those Monday Blues

I expect it was inevitable at some point.

And today was the day.

Woke up this morning immersed in fear.

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.

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Tales From the Dark Side

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.

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Fortunate Son, Part 1

So much of what I’ve been able to witness and/or be a part of throughout my life are, frankly, the product of Happy Circumstance. Seemingly random occurrences which placed me in the right place and time, with the right people.

Start with the very fact of my existence. It would seem that my old man enjoyed a bit of good fortune himself. As World War II got into full swing, just about every able-bodied young man was expected to play some role in service to the war effort.
Lou elected to volunteer for the Coast Guard, which had been placed under the command of the Department of the Navy “for the duration.” After completing basic training, he was assigned to a ship, and traveled to San Francisco to assume his duties.
The ship was anchored in San Francisco Bay, off Treasure Island, with orders to depart for the South Pacific sometime in the next 48 hours when the hand of fate, as manifested through the military bureaucracy declared him an official Lucky Bastard.
Prior to the war, Lou had some experience working in a teller’s cage for a bank in Des Moines (it was the Depression—you took  work where you found it). As a result of that background on his résumé,  he’d been declared, in Navy parlance, a Storekeeper, which essentially meant he could drive a typewriter and add a column of figures.
Thus, when some gold-braided officer ashore determined that another half dozen or so enlisted men who were at least semi-literate were needed for clerical work, he was one of those who plucked from the rolls and ordered off his ship.
Thus, instead of spending the war (or as much of it as he survived) engaged in the ongoing floating hell that was the Pacific Theater, Lou’s war was fought  in San Francisco Bay on Alameda and Treasure Islands, and he spent most of his off duty time in the City.
So the fact that I exist at all can really be tagged as a happy accident. The odds of him surviving four years in the South Pacific and finding his way home physically and mentally intact enough to father me (given how emotionally damaged he was already) have to be pretty slim.

San Francisco was a hell of a place to be in those years, especially for a guy dressed in Navy blues. It’s hard to imagine what it must have been like for a twenty-something kid from the Midwest who’d never been out of Iowa.
But I know this much. When he was mustered out after the war, he made a beeline back home, told his honey “we are NOT spending another winter in this, you won’t believe what I found” and started packing stuff into the old Chevy.
After a leisurely cross country trip along the Southern Route (US 66), the young couple landed in the Bay Area, initially renting an apartment in Burlingame before buying a brand spanky new tract house in Santa Clara and moving just in time for me to be born just after the New Year in San Jose Hospital.
So, once again: Lucky Me. Instead of growing up in the summer heat and humidity and winter ice and snow of Iowa, I’m a Native Californian. Actually, better than that, I’m a Bay Area native (there are many Californias; each with its own unique personality).

It would be hard to overstate how fortunate I feel having had the chance to come of age in California in the latter half of the 20th Century. Visitors from places around the world come away impressed with one thing or another, depending on their tastes and priorities. Almost all seem to find something to carry away with them they see as memorable and exceptional.
There’s a lot to love. And it’s remarkable for its diversity as much as the special flavor of any particular piece. Whether it’s snow crowned mountains, sun kissed beaches, or stark desert; urban or wilderness, you can find it within our borders, often just a couple hours drive away.

Growing up in The Golden State, and spending the bulk of my life here has infused me with a depth of appreciation born of decades of intimate familiarity. I imagine a first time visitor may be, in some respects, more “wowed” by aspects that have long since become commonplace for me. But the other side of the coin is that living here for so long has built within me a rich sense of love for this corner of the planet. There may have been a time in my youth I didn’t fully appreciate what a privilege it is to be here; if so that time is long past.

It’s difficult for me to find the words to describe my love for this place, and my sense of connection to it. I spent my childhood within a few miles of San Francisco, and once I left home the bulk of my youth and young adulthood found me in the City, at the center of a cultural and artistic moment unparalleled in my lifetime.
So, that I love. I also love spending time under the cool, quiet canopy of groves of redwoods that were already old when the Roman Empire was spreading across the “known world.” I love the subtle but insistent beauty of our deserts.
I am nourished by the soul healing, ever shifting waters of the Pacific Ocean, whether those waters wash the sands of sun kissed beaches or crash dramatically against rock cliffs in the endless dance of dominance along those hard shores. Driving through the grass covered rolling hills of California live oak country infuses my heart with a lyrical gratitude that, after a lifetime of absorbing it, I still don’t understand.
And this barely scratches the surface. I’ve not even talked about the remarkable character of the birds, beasts, and fish that still find space for themselves in our ever more populated state. Haven’t begun to explore the wonders of our climate, and its perfect pairing to the needs of the human body.

Nor have I really done any unpacking of the story of humans on this land, from the earliest first peoples who lived quite comfortably, if simply, in the bounty nature provided for untold centuries on into the stories of successive waves of newcomers to the state (with all the good, and terribly bad those stories encompass); or spoken of the fascinating structures and other artifacts those generations left behind for us to explore and try to understand. And still today, there are parts we get right, and parts we get wrong.

Lucky me. I’ve had the privilege to call myself a California native for almost seven decades, now.

Turning once again to the specific fact of  growing up in the Bay Area in the 1950s and ’60s, it’s important to note just how deeply I perceived myself a misfit, pretty much as far back as I can remember.
Some of that, no doubt, was the result of environmental factors, be it a childhood in an alcoholic home or the fact I was a poorly coordinated, unathletic, glasses-wearing kid who was an easy target for schoolyard bullies. Some a function of my own internal dialog. I never really felt a comfortable and confident sense of mastery; that I truly belonged anywhere, really.
And, as I commenced my fitful slide toward adolescence, and beyond, that sense that I didn’t fit grew increasingly to dominate my narrative. That was when the indescribable good fortune of being located a few miles from San Francisco, just as the City was becoming the center of the counter-cultural universe, really made itself apparent.

More on that is ahead in Part 2 of this narrative. For tonight, I’m wrung dry.

 

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Every Day is “Mother’s Day”

I posted this up on Facebook late Sunday. And, I confess, reaction was so strong I’ve been persuaded to repost it here so it sticks around.

I’m tired and more than ready to log off, but I wanted to at least acknowledge, and share a thought or two about Mother’s Day.

To those among my friends for whom this day remains a pure, happy celebration of love, my deep and sincere best wishes.

But, I’m keenly aware that there are a number of folks who, for various reasons, land somewhere between “mixed feelings” and “raw grief” this day.
And I send my heart’s desire for peace and comfort your way as well.

  • For the children who have lost a loving mother.
  • For those who feel they never knew a loving mother.
  • For the women who mourn the fact they were never able to have children.
  • For those who made a thoughtful, personal choice not to have children for good and valid reasons but who nevertheless feel left out, if not judged, on

    Please see note.

    days like this.

  • For the mothers who have had one or more children die or go missing, and are living their lives now carrying a gaping, invisible wound that never fully heals and will be with them all their days.
  • For the single fathers who find themselves trying to be mother as well.
  • For the grandparents who thought they were headed for retirement but instead are now raising a “second family.”
  • For the mothers and children separated by incarceration, war, or politics.
  • And for all the others whose particular situation I have not called out here, but who found themselves feeling “out of step” with the dominant narrative today.

May you all love and be loved; may you feel peace, safety, and connection; may you all sleep tonight with full hearts.

Note: I found the artwork that accompanies this post a couple days later on a friend’s Facebook page. Seemed to drive the same message so well, I thought I’d include it here. It was created by Boston artist Megan J. Smith for their Repeal Hyde Art Project. You may want to check out the project’s web site here.

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