CLOUDS W ?
SUNSHINE – S ?
13TH JANUARY ?
12.59 COLD WATER
1028 COLD WATER !
02.03 COLD WATER
LIGHT BREEZE N !
CLOUDS W ?
MACKAY HOUSE !
CLOUDS S W
LIGHT BREEZE N
Almost exactly a year ago, Mum had a visitor in palliative care: a delightful eight-week-old red kelpie puppy named Josie. This year, Josie’s first litter of puppies are delightfully eight weeks old, and I’m here to say goodbye to Dad.
On the bright side, this has been the occasion of the best picture of my life so far:
Whoever’s writing this story is a little heavy-handed with the symbolism, no?
Dad’s stopped eating. I’m flying back to Australia.
I just had two weeks off work with the family and absolutely nothing planned, which hasn’t happened in about seven years. It was awesome. I found out what I’m like these days when I’m not working long hours, caregiving and/or stressed out of my goddamn mind.
Quite a lot more relaxed and funnier, it turns out. More patient with the kids. I ride as much as I can, go to the pool, go to yoga classes and museums, see films, eat panettone and peppermint bark, drink Bailey’s and New Zealand sauvignon blanc. I go to friend’s houses and I spend long afternoons at home, reading or messing around on Tumblr. I make much of my cats.
I’m bored out of my mind now and more than ready to get back to work on Monday. Solid result.
- Not getting up till eleven this morning because trapped by the cuteness of the cats sprawled on the end of the bed
- We still have most of a panettone and about a third of a box of peppermint bark left
- Seeing Big Hero 6 again and loving it just as much the second time and then unanimously agreeing that we needed teriyaki for lunch
- Ending the year as I began it, actually mansplaining things to the mister
- This year I reconnected with a couple of old friends I had thought I’d lost for good
Twelve years ago, I personally made this. It was one of my better days.
This year Julia giftwrapped herself for me, so now they are both my Christmas presents.
Then we went out for dim sum. Brand new old family tradition.
I’m very lucky.
“Did he suffer?” I hate that question. Survivors of the deceased ask it all the time. If the answer is no, I’ll tell them the truth. If the answer is yes—sometimes I will lie.
I ran into Dr. Hirsch in the hallway. He was cleaned up, but had several raw abrasions on his forehead. He looked worn and tired, and was limping. His right elbow was covered with a gauze bandage. I had never seen Hirsch rattled by anything, and now he seemed so suddenly fragile, this brilliant man, this great leader. I wanted to hug him but was afraid to hurt him, so I held out my hands. He placed his fingers in mine, and I rubbed them, then turned his hands over. The knuckles were bruised, scratched, and dirty. “See these contusions?” Dr. Hirsch asked, in the same tone of professional remove he employed at morning morgue rounds. “They are from a man hunched and covering his head.” He demonstrated, and when he did, looked very old and scared. Then, without another word, he walked away. I couldn’t tell whether Charles Hirsch was making a teaching point or confiding in me. Or both.
I read about 120 books this year, down from 150 in a normal year, which is not to say that I got less solace from reading. What did happen is that I read in different, maybe more intense ways. There were a few books I read over and over, until I had them almost by heart (Feather’s Your Blue Eyed Boys, Ann Leckie’s Imperial Radch, which I read and reread and then listened to on audiobook.) There were a few books, and I’m sure this is difficult to believe but it’s the truth, that I found so physically exhausting to confront that I would read a page or two and then have to sleep for a while (The Boy Who Was Raised as a Dog, Achilles in Vietnam and Trauma and Recovery.) I got through those mostly on Saturday afternoons. Boy do I know how to party.
There were other things as well that meant as much to me as books, which is rare. In the days and weeks immediately after Mum died, Cabin Pressure and Brooklyn Nine Nine were pretty much the only things that could make me laugh. I had The National’s album High Violet and Vienna Teng’s Aims on constant rotation all year. Lorde’s cover of “Everybody Wants to Rule the World” was everything, including the source of this post’s title. Richard Linklater’s Boyhood is the best film I saw this year but Captain America: The Winter Soldier is the one that meant most to me, even if it only meant it perversely, as mere backdrop to Feather’s universe.
In general I would say that everything in my reading life got a lot more complicated, including the question of what, exactly, a book is. If I listen to it, is it still a book? Sure. What about if it’s Pema Chodron or Amy Poehler, and she’s reading it to me herself? Still a book. What about if I’m listening to Cabin Pressure or Serial? Not books. Why? Because they use multiple voices. Uhh, but Amy Poehler has Patrick Stewart and her parents read parts of her book. Huh. Well, if I read it on my Kindle it’s definitely a book, right? Sure, unless it’s fanfic. Which is the case with the best book I read all year. Now available as a podcast.
That technically-mediated fucking-up of formerly orderly shit could not be more thematically appropriate, as it happens. This was my cyborg year. I acknowledged a debt of gratitude to Mum’s kindly machines. I realized with something of a cold shock just how rapidly my career accelerated after I got an IUD and stopped losing a week a month to the pain and debility of having a period. I nicknamed the Teng album “Soundtracks for Space Operas” and, crucially, I saw myself in Feather’s Bucky and Leckie’s Breq.
None of this should have been as surprising to me as it was. This blog was named for another very Breq-like character, the protagonist of Greg Egan’s Diaspora. When I named it, though, I thought I was naming something other than myself; a software person, not me. Liz was the first friend to call me Yatima. Lots of people call me that now. It means orphan, and it’s something I am becoming (something we all become.) I’m part flesh and part metal, with an outboard memory humming on a distant box. I’m exiled from the past (which in my case is literally another country.) Damned if I can explain the mechanism, but Yatima, the software orphan, is now the means by which I call my future self into being.
Twenty years ago, Mum and I went to Newgrange and saw the light shine in from the window box. Today, Dad moved into a nursing home. This year, the universe is seriously fuckin’ rubbing my face in the real meaning of Christmas.
Now you get a little of what fucked-up theology remains after a decade of intense Church damage and almost two decades of hard living in San Francisco; the tattered remnants of the beloved songs and stories of my childhood with as much of their cruelty and colonialism and cruft ripped out as is humanly possible. It took my having a child of my own twelve years ago on Christmas Day to knock it into my thick head, but the point of the tradition I was raised in is not that my people are specially special and should get to be in charge, hell to the no, fuck that shit: it is that every child is holy. Every child is a child of (for want of a better word for it) God. Every child has a star blazing over the place where she was born. Wise people follow that star to bring gifts for the child: gold, frankincense and myrrh; the gift of the world, the gift of the spirit and the gift of a mindful death.
Fall on your knees; o hear the angel voices. Because: follow that thought through to its logical conclusion. People, all people, yes, all of them, the annoying hipster dude ahead of you in line painfully screwing up his breakfast order, the pedestrians crossing the street in front of your car, your beloved, your boss, your work nemesis, your Burning Man nemesis, all your exes including THAT one, your past, present and future crushes, your kids, everyone in Syria, everyone in Tuvalu, everyone in Antarctica, everyone in Arkansas, Putin, Merkel, Cory Booker, Amy Poehler, Rachel Maddow, even Dick motherfucking Cheney, much as it pains me to admit it: they’re all holy. All sacred. All children of God. All doomed. The people you love so much you can’t bear to think about it are going to die, maybe of esophageal cancer, maybe of frontotemporal dementia. The people you’ve never met, they’re going to die too. You’re going to die.
The real meaning of Christmas? Sure, the sun’s at its lowest excursion, the molten Arctic is deep in gloom, sure, 2014 contained a metric shit-ton of absolute garbage even BEYOND the fact that my brilliant, adorable mother died during it, seriously, fuck you, year; I mean, 2014 was just an absurd load of crap, civilian planes vanishing and being shot down, incomprehensibly brutal foreign wars and bloody domestic horrors, rape and murder, the Torture Report (Cheney may be a child of God but he is nonetheless a war criminal) – what was my point? Oh, right; sure, it is the long dark night, and then some.
So why do we even bother? I think a lot of the time we don’t actually know why. We either don’t think about it at all, if we are sane and well-adjusted (I’ve heard tell of such), or if we’re the kind of weirdo that does think about it (I know I am but what are you) we puzzle away at it for year after weary year and never really get any closer to an answer. We just do, bother that is, and terrible as it seems sometimes, unbearable, unfeasible; gradually over time, more is revealed; tiny pleasures, like cups of tea and naps, or huge, terrifying joys, like having a baby, or like the courage with which my mother faced her death.
The point is that for the most part, and with unbearable exceptions like Robin Williams and Aaron Swartz, we do keep plugging away at it, raising children, starting startups, picking up Bebe’s ashes from the vet and adopting new kittens from the shelter, saying goodbye, saying hello, going to work, trying to do a good job, trying not to yell, trying to be the institutional memory, trying to rewrite the codebase. Tidying up in an endless, hopeless cycle, trusting that the arc of history does bend towards something better than this, something more like justice. Paying the bills, karmic and otherwise.
The point is that it’s so clear to me that my grief for my mother is another, merely time-shifted expression of my love for her. Time is an arrow that flies in only one direction, straight to your heart. Without there being frail, old cats, how would you know to revel in the shiny sproinginess of the kittens? Without the dark of the tomb, how would you even perceive that shaft of the sun’s light? Angels are messengers, horrifying and incomprehensible. I don’t really understand what they’re saying to me but I know that it’s important, and I am trying to hear.
Me: trying to find the perfect version of o holy night, so far it’s a tie between sufjan stevens and tracy chapman
story of my life
Her: Oh no it’s not! It’s the Mormon Tabernacle Choir. I listen twice a day. I sit quietly and cry. It’s sublime. Truly.
Me: fall on your knees, o hear the angel voices
is pretty much everything right now
Her: It’s funny you’d be listening to that. I mean, I’ve seriously been listening in silent meditation twice a day for about two weeks. And in my head I hear that line all day.
What are the odds, really?
Your competence gives you a secure sense of identity.
By age eighty-five, working memory and judgment are sufficiently impaired that 40 percent of us have textbook dementia.
More than half of the very old now live without a spouse and we have fewer children than ever before, yet we give virtually no thought to how we will live out our later years alone.
People with serious illness have priorities besides simply prolonging their lives. Surveys find that their top concerns include avoiding suffering, strengthening relationships with family and friends, being mentally aware, not being a burden on others, and achieving a sense that their life is complete.
…those who saw a palliative care specialist stopped chemotherapy sooner, entered hospice far earlier, experienced less suffering at the end of their lives—and they lived 25 percent longer. In other words, our decision making in medicine has failed so spectacularly that we have reached the point of actively inflicting harm on patients rather than confronting the subject of mortality. If end-of-life discussions were an experimental drug, the FDA would approve…
The patient and the family opted for hospice. They had more than a month together before he died. Later, the father thanked the doctor. That last month, he said, the family simply focused on being together, and it proved to be the most meaningful time they’d ever spent.
No one ever really has control. Physics and biology and accident ultimately have their way in our lives. But the point is that we are not helpless either. Courage is the strength to recognize both realities. We have room to act, to shape our stories, though as time goes on it is within narrower and narrower confines.
I needed something from the world I didn’t know how to ask for. I needed people—Dave, a doctor, anyone—to deliver my feelings back to me in a form that was legible.
The insistence upon an external agent of damage implies an imagining of the self as a unified entity, a collection of physical, mental, spiritual components all serving the good of some Gestalt whole—the being itself. When really, the self—at least, as I’ve experienced mine—is much more discordant and self-sabotaging, neither fully integrated nor consistently serving its own good.
“That’s so generous,” she said to me when I gave it to her—and of course I’d been hoping she would say that. I wanted to do nice things for everyone out of a sense of preemptive guilt
The great shame of your privilege is a hot blush the whole time. The truth of this place is infinite and irreducible, and self-reflexive anguish might feel like the only thing you can offer in return. It might be hard to hear anything above the clattering machinery of your guilt. Try to listen anyway.
A cry for attention is positioned as the ultimate crime, clutching or trivial—as if “attention” were inherently a selfish thing to want.
Trauma is bigger than expertise of any sort – it’s in our midst, in our language, our wars, even the ways we try to love, repeating, repeating. No one is an expert on trauma.
To read is to be drawn away from the confines of the body and the present moment into another time and place.
The poet Audre Lorde tells us that “poetry is the way we give name to the nameless so that it can be thought.”
Just south of the Lions Park out of Manilla, NSW, someone has painted a bearded face on a tree.
It’s the first of eight such faces (that we know of), all taking advantage of the contours of the burls. The second one, named Toby by my nephew though it looks more like Gromit, is my favorite.
Before this trip to Barraba I tried to describe to myself the difference between my father’s town of a thousand souls and my own beloved city of San Francisco, population 800k but arguably way fewer souls. There are the giveaway jokes: Barraba used to have an asbestos mine, and just missed out on a new abattoir. In New York, everyone’s writing a novel; in LA, they’re working on a screenplay; in SF, they’re building an app.
That second joke gave me a clue. I love the density of narrative in cities, the plaques on London’s Georgian houses, the ghost of the railroad through the Mission, the undergrounded waterways. I thought for a while that Barraba is relatively empty of stories, until I remembered with a stab of sorrow that it used to be full of them, but that my ancestors tried to kill all the people that knew them.
I’ve spent enough time in Barraba to have made good friends and learned a little of their stories. Pam has a great one about her husband Ted riding across a flooded creek to be with her when she had a baby; she remembers the sight of him galloping up to the house, surrounded by a halo of flies. Jane’s family owns a property called Wiry, which I had assumed was an Aboriginal name. Turns out it was part of the land grants to returned soliders, and because it’s a relatively hilly and inaccessible property, the recipient grumbled “Wouldn’t it root ya.” More giveaway jokes.
Jane asked me flat out what all seven of you remaining blog readers have probably been wondering: “Are you neglecting the blog because the stuff you’re thinking about is too intense and sad?” Yup. But something really terrific has happened. A researcher has become interested in Dad’s blog, which was critical to his diagnosis of semantic dementia. We have 17 years’ worth of his written records as his condition developed – more than five times the length of the next longest case study. Joanna believes we can extract psycholinguistic markers of the changes to his vocabulary that may help scientists to develop more sensitive diagnostic tests.
As part of collating the material for Joanna, I read a few of Dad’s earliest blog entries. He had a decent line in giveaway jokes of his own:
Tue 10 Feb 1998
Got away late from Sydney. Lasted on the road until 6 o’clock at which time we found ourselves in Gunning, between Goulburn and Gundagai.
Gunning is a town of a thousand souls and very few outstanding features.
Death is the eater of meaning. It swallows up whole universes, erases stories from the landscape.
The work of grief is to make sense of loss. We have to make new narratives to mark the place of those that are gone.
We have to find the faces in the forest.
So we went to see what all the fuss was about.
The first night, we stayed at the Wawona.
The absolute highlight of which was this handsome fellow vogueing in the shrubbery.
Next morning, brunch at the Ahwahnee.
Then El Capitan, or as I like to call him, Steve.
We stormed around the Merced River for a bit, which was painfully scenic.
Then I don’t even know, a meadow and some rocks and stuff.
A waterfall of excruciating beauty.
Tea back at the Ahwahnee with a mama mule deer and her twin fawns.
Pinot grigio on our balcony at the Yosemite Lodge, with our own personal mountain.
And our own personal sunset.
Glacier Point on the way home, for one last overdose on grandeur.
Buh-bye rocks and stuff!
I guess I would characterize all the fuss as “not wholly unjustified”.
We chose the most beautiful morning imaginable.
Even @karlthefog had come out to Alcatraz.
The flock of kites in prison made me think of my Dad.
The Lego portraits made me think of playing with my brother as children.
Each portrait is of a prisoner of conscience.
I was ashamed at how few of the names I knew.
It’s a powerfully angry and compassionate body of work.
We are all one family.
I love it immoderately.