In caregiver support group, someone says “I would like to sit longer with joy,” and my body responds with an instantaneous shower of chills.
There is an urgency to life right now. It feels like nothing can wait.
At dinner immediately after, I catch myself leaping out of my seat at soon as the last forkful of food has entered my mouth. I stop, sit back down, close my eyes, take a deep breath. More chills. I feel my gut unclench.
I did it again this morning at breakfast, jumping up like there’s a fire in the kitchen and I have to rush to put it out. But there’s no visible fire, just the slow, underground burn of his decline. Miles and miles of it stretching under everything.
A lovely short post by Dave Rupert about platforms and silos and what we’re getting out of being in online spaces. Having been largely absent from social media since becoming a caregiver, I don’t feel a lot of Loud Feelings about the implosion of Twitter.1 I do feel the urge to encourage folks, as Dave does, to “pour a foundation for your own silo or home.” A personal website is a lovely thing. Nobody will buy this platform and use it as their personal plaything. No advertisers will boycott and send me scrambling to produce different content. No seed funding will run out overnight.
But as Robin said: “It’s not enough to make something and post it online; you must also inject it into some channel that will carry it to people.”
For now, that channel is mostly RSS, with the occasional direct share to Discord and Slack. I’ve contented myself with carrying these posts to far fewer people of late, and maybe that trend will continue. I’m toying with the idea of Dunbar’s Digital Number. How many meaningful online relationships can I maintain? The number shifts dramatically given what I’m doing in the rest of my life, and the fact is that I’m currently walking around with overwhelming emotions sloshing perilously close to my airways at all times. So I don’t let myself worry over what will become of Twitter, even though it brought me so many treasures and connections and friendships and opportunities over the years, because I’m doing as Dave suggests and pouring value into myself.
That’s enough for now.
1. This might change when it’s time to promote my next book and I emerge from the bunker to find tumbleweeds where my weird and far-flung online friends once stood, but that’s a problem for Future Lucy. ↩
I’ve become a person who says I’m going to do things and then completely fails to do them and it feels so intolerable to my sense of self.
In my support group for young caregivers we talk about the emergence of new selves from this season of our lives. How they’re unfolding in real time. How we haven’t fully met them yet, or learned what they really care about. What they’re capable of.
Past Lucy—or Portland Lucy, as I’ve been thinking of her—excelled at Doing Things, but Present Lucy isn’t up to the job. Past Lucy still says “Thanks so much for thinking of me. This sounds like a great project! I’ll get you those initial sketches by next Friday,” while Present Lucy says “Have I already taken his blood pressure this morning? How long has it been since he ate? Will I be able to sleep in my own bed tonight or are his legs still too weak to go up the stairs to his room? He needs a bath today. When did I last cut his nails? Is that the alert system going off? Oh he just got out of bed. The nurse is coming at 1pm. The phone’s ringing—oh shit it’s the lawyer. I was supposed to sign that engagement letter. What did we talk about at the appointment? I can’t remember. It’s already been a week. How long has it been since I ate? I need to change his Depends. Time to take the blood pressure again. The nurse said he shouldn’t sleep too much during the day, but the physical therapist said to be careful not to overdo it on the exertion. Should he be exercising right now? Should he be asleep right now? What’s this check I just found in my desk? Agh, there’s the package I told her I’d mail before the weekend. Last weekend? What day is it? I need to do laundry…”
(and on, and on, and on)
The friend I’ve been doing coaching work with looks at me sternly from our Zoom window. “You need to let go of the idea that you can work in an environment where you’re constantly being interrupted by a medical alert system.”
Okay, so I have to leave. Go to the studio. I’m lucky—so lucky—to have a studio. I just need to get there. To get there I need to have slept enough to get up early enough to go before he wakes up. To get there I need to get the ingredients to make the quiche to bring the food so I can stay long enough to work. To get there I need to get gas in the car to drive across town to be there on time. To get there I need to have enough executive function to put all the pieces in place, and we already know how well that’s going.
“I hope your dad’s doing better after his stint in the hospital!”
I parrot back platitudes, but I don’t know what they really mean. He’s recovering from three surgeries and adjusting to new medications and succumbing to mortality all at once.
He went in unwell and for a moment I entertained the fantasy that he’d come out better. Not cured, just improved on some level. And maybe he is. Maybe it’s hard to see beyond the fatigue and the confusion to the circulatory system beneath. The miscalibrated meds a mask for actual health improvement. But it doesn’t feel like he got better. It feels like he’s just getting worse, and we’re over here pushing so hard to try and stave off something inevitable.
I’m taking advantage of a chance to work with a new acquaintance who’s training to be a coach. I’ve never had a coach before! The idea of having someone—ANYONE—to look out for me is really appealing right now!!
But also: I’m suspicious of why I’m doing this.
Some things I know:
The way I was working pre-Pandemic brought me a degree of financial stability, novelty, recognition, and stimulation that was deeply pleasing to me
The way I was working pre-Pandemic spread me thin, encouraged me to keep playing the hits, caught me in a web of social media addiction that didn’t make me happy, took me away from developing deeper and more intimate relationships with the people closest to me
I have a big fat A+ Student complex and a Perfectionist streak a mile wide
I have at least five personal projects that all feel like they’re languishing at 89% completion and if I could just get them finished everything would change
I have a knack for translating complex internal experiences into stories that speak to people
I feel pressure to translate every complex internal experience I have into stories that speak to people
Making work that connects me with other people nourishes my soul
I used to believe that by pulling off impossible deadlines I was somehow training to cheat death
My life as a caregiver (and co-parent-habitator) is so different from any other life I’ve lived before
I live in a society that systematically devalues the kind of labor I’m spending the majority of my time doing right now
I live in a society that systematically valorizes the kind of career I was building before I transitioned to this season
Doing more will not ultimately protect me from the grief of slowly and inevitably losing my dad
I’m sniffing around the idea that I might be using a coach as a taskmaster who will “get me back on track” and help me recapture the cadence of my pre-caregiving life. Do I really want that? Or is it just my best guess at what will give me the good brain drugs, and I’m so hungry for something that feels better than the inevitable decline I live with every day that I’m scrabbling for it with everything I’ve got?
Cross-posting from Patreon because I want to keep this stuff on my site, too. CW: this post talks about an ER visit, elder care, and grief.
Two days ago I was trying to explain to a partner how intense being a caregier is despite there not being very much “action”. My dad is stable. He doesn’t have a clear timeline. I just know that he is old, and often confused, and needs my help.
Yesterday that looked like agreeing to take him to The Farmer & The Cook, the local venue where the collage pieces we made together have been hanging for the last six weeks. That’s where I took this photo. He misses being out and about every day, greeting his public, watching people going about their business. It’s one of the things I struggle with most: I want him to be safe, and I also want him to be happy.
It was set to be a scorcher, so I made extra sure he’d had breakfast and his smoothie before we left the house, tried to get there early in the day, parked him in the shade.
But maybe I jinxed it, talking about there being no action, because ten minutes after I took this photograph he had an episode—slumped over, drooling, unresponsive. His dentures slid out of his mouth one after the other in a slow-motion horror show I’ll never forget. I kept hoping he’d snap out of it but he didn’t. Someone got me ice. I found myself wondering if his insurance would cover an ambulance. I didn’t know what to do. I called my mum to come join me and asked her to bring the walker, because we’d gotten him into the car with the walker on other occasions when he got wombly, but in this instance it was totally laughable because the man was clearly unconscious.
He was gone.
She arrived, took one look at the situation, and called 911. I just kept holding his shoulders, patting him down with ice, trying to bring him round. It is awful to feel so useless in the face of a crisis. I knew he needed to drink water but he couldn’t drink. How was I supposed to get him to drink?
He looked so small when they put him in the ambulance.
Driving the half hour to the hospital on the tail of the paramedics, there was no way to know what we were in for. Would he be paralyzed? Would he be dead? Would he remember? Would he be fine?
There’s a sick sense of relief bound up in an episode like this because we understand acute crisis. I can talk about “hospital” and “collapse” and “emergency” and people will understand—even if they’re just drawing from pop culture, they’ll understand.
But every day as a caregiver carries that load of uncertainty. It’s not as loud, so we can function, but it builds and builds. It ripples. It reminds me that it’s not just my dad whose life could change or end at any moment—it’s me. It’s everyone.
Even when nothing is happening, so much is happening.
I spent 9 hours on the sidewalk outside the hospital, waiting. It was 90º out and miserable. No waiting room privileges because of COVID. Mum had to be the one person allowed in the ED with him because she knows his doctors and medical history better than I do.
One impossibly kind nurse got me back to see him for three minutes, which wasn’t enough, but also was. I heard his voice. I saw his eyes open and smiling. I got to stroke his hair.
They kept telling us he was going to move to the hospital proper, where he’d be allowed two visitors, but when they finally did move him, four hours after that initial, tantalizing announcement, visiting hours were over. I had to stay outside.
I’m paying a lot of attention to labyrinths this year. I’d already been outside the hospital for two hours when I went to move the car and realized I’d been sitting twenty feet away from this:
I’ve stopped being surprised by this sort of stuff. I just start laughing and saying “Okay, OKAY I get it” to no one in particular.
I walked it when the sun finally went down and the temperature dropped enough to move in.
In ten minutes I’m going to drive back to Ventura to pick him up and bring him home, apparently no worse for wear. No stroke, no heart attack, just…age. Heat. Dehydration. Blood pressure. Who knows. And this makes me feel relieved and grateful and exhausted and also so angry. Because even if he’s fine, we’re left carrying the weight of how it could’ve gone. These pendulum swings of possibility.
I’m left remembering his teeth in his hat on the floor of the car, riding down the highway with us on our way to the unknown.
Hourly Comic Day is an annual tradition in the comics community where folks set out to draw a panel (or two, or three) for every hour they’re awake on February 1st.
It took me a couple weeks to get through finishing my pages from this year because it was a) hard to fit in inking and watercoloring and posting around caregiving, but also b) just exhausting to deal with emotionally. Still: I’m so glad I did it. In 2021 I was right on the cusp of uprooting my life in Portland to move down to Ojai and look after my dad. Now I get to have a record of what the rhythm of these days has been like, and I’m sure I’m going to appreciate it more and more as time goes on.
There’s more to say but I’ve been formatting and posting these pages in various ways all day as I spread them across my internet haunts and I am wiped, so I’ll just get on with sharing them. If you’re finding this through an RSS reader, be warned that the gallery won’t work! Ya gotta click through to read it easily. (Also! An accessible edition with panel by panel alt text is available here thanks to a collaboration with various folks from the Friends of the Space Gnome Discord server. Blessed be their name.)
I’m starting to think I have a knack for digital bibliomancy—an uncanny ability, given the vastness and improbability of the internet, to stumble upon just the right input at just the right time.
To set the scene: I finished watercoloring my hourly comics tonight, and have been thinking a great deal about repetition and sameness and grief and depicting the people and places you love. I’ve also been picking apart why, having made this intimate portrait of what it looks like to care for my aging father day in and day out, I feel more comfortable with the idea of sharing the comic online with an audience of thousands than I do showing it to my own mother.
Tonight, the knack looked like going on Twitter to follow someone I’d just met through a private Slack, reading the last few tweets in her timeline, seeing a link she’d posted in early 2021 to a now-archived blog, clicking through and laughing at the blog and then feeling like the curator‘s name was familiar, realizing I’d read a book she’d cowritten some years ago, perusing a list of essays on her website, and finally clicking on the first one because it was about “death, mourning, the artist Pierre Bonnard, and how to make a vital life out of repetitions and sameness, rather than newness and adventure.”
Here she comes:
There is a deep, dark, endless feeling to representing one’s insides. What appears in your writing changes the objects and people around you; they take on the qualities of how you portrayed them. A friend drawn ugly becomes ugly. A life drawn sweet becomes more sweet. To draw your life is to attempt to transform it with your magic. Your life invariably comes to resemble the depiction layered on top of it, because you now look at it through the lens of how you depicted it. This is why some artists run away from their lives; because who among us can live forever in our own dream?
I threw that bold in there, because that was the point I sat up straight and thought “OH SHIT.”
Of Bonnard’s working method the curator Dita Amory wrote, “Only when he felt a deep familiarity with his subject—be it a human model or a modest household jug—did he feel ready to paint it…. Asked if he might consider adding a specific object to his carefully circumscribed still-life repertoire, he demurred, saying, ‘I haven’t lived with that long enough to paint it.’”
I have repeated that phrase in my mind so often since encountering it, twisting it this way and that: I haven’t lived with it long enough to paint it. I haven’t lived with it long enough to write about it. I haven’t lived with it long enough to love it. What does it mean to distrust the novelty of experience? To say instead that what one needs in order to create are not new things—not new grand adventures, not new wives or husbands or cities—but the same thing over and over again until a Platonic form of the thing builds up in the mind and becomes the model for what is written about, or painted?
There were many moments in the course of penciling and inking my hourlies that I found myself drawing things without reference and feeling surprised—as if I haven’t interacted with them daily my entire life. As if I haven’t seen the exact pattern of my father’s behaviors day in and day out for an entire year.
I keep thinking about fixed action patterns in animals.
I keep thinking about what is being cemented in me during this season.
We all know that there is a quality of duration that must be harnessed, which seems to be not only a way of working against the fickle intrusion of inspiration but the only way of living after a certain age: understanding the humdrum repetitions of life to be a kind of balance; refusing to chase the tsunami of inspiration that comes with each new falling in love, each new city; having only the same walls around us, and the same plates, and only one wife, who will always dislike our friends, and spend day after day in the bath.
(I even have a wife who loves the bath! It’s not relevant to the main thrust of this, but I do love my wife and my wife loves the bath.)
There it is: the delight of finding something that speaks so precisely to the moment I’m in—down to the second. And then the wondering about whether reading it on any other day would’ve left me cold.
(The first time I read Ali Smith I bounced off her work entirely. And now I’m reading everything of hers I can get my hands on.)
Walking in the forest with my dog a few weeks after my father died, I noticed the green of the fir trees; the colors were so muted and beautiful. And up above was a flat gray sky, easy to look at, the sun dimmed at midday by a thick layer of clouds. All I could see were the colors in nature and their perfect harmony. I could have stood there staring for much longer if my dog hadn’t been impatient, and if my shoes hadn’t been wet. Everything was dripping, the previous day’s snow already melting. And because I felt in that moment as if I had never really looked at colors before, I stood wondering beneath the shadowless sky whether, when my father died, the spirit that had enlivened him passed into me, for I had held him as he died; as perhaps when his father, a painter, died, his spirit went into my father, so that now I had the spirit of my father and the spirit of my grandfather both inside me. And I wondered whether this influence—the spirit of my painter grandfather inside me—was why I was suddenly noticing colors.
My goal now is to forget it all so that I’m clean for death. Just the vaguest memory of love, of participation in the great unity.
What does it mean to be a steward of something or someone in decline?
In caregiving or hospice work (and ecological thinking in the era of climate collapse), this is clearly the game, but I catch myself wondering how it translates to making a comic or writing an essay or any other generative act. How is this season of my life a form of cross-training?
Often I think of creation as an additive process—raising a child, building a city, weaving a carrier bag. But what if, rather than moving closer to the realization of a vision, the putting-down-on-paper-ness of it all degrades the original, unthinkable idea? (However I pronounced “Hermione” in my head as an eight-year-old, for example, vanished the moment I listened to Harry Potter and the Philosopher’s Stone on audiobook.)
I say “degrades” and feel the jolt of negative connotation, but I don’t mean for this to be negative. There are many ways to think about caring for someone with less time left on this earth than I have. Some of them are negative, depressing, dispiriting. Some days I succumb to that helplessness. But there’s a richness to it, too, even if it doesn’t fit the cultural model we’ve inherited for worthwhile heroics. Again, Le Guin: “[…] the Hero does not look well in this bag.” I try to apply the grandiose posturing of meeting an impossible deadline to the work of caregiving and instead I come up against the fact of death again and again and again.
I think there’s still a part of me clinging to the idea that if I could only become [blugh] enough, I could bring my ideas into the world in a visual form that fully encapsulates what’s present in my mind. And yet: 100% of the time, the page I draw does not, cannot, match the one I envisioned when I sat down at the drawing board. And yet and YET: 100% of the time the physical manifestation of that vision eclipses what I’d imagined. Maybe not in the moment, because I’m stubborn and I’ll usually spend a day or two scowling at whatever’s ended up on the page, muttering about how I’m not mad I’m just disappointed, but once I’ve gone away and come back and seen the page contextualized in the greater stream of the narrative, it’s like someone’s shaken the Etch-a-Sketch. Blank slate. The vaguest memory of love.
I’m an inveterate thrower of clothes on the ground at the end of a long day. Always have been. If I’ve gotten sweaty or messy enough to huck them straight into the hamper, great, I can do that. But the truth is I usually wear things more than once before putting them in the wash, and so I throw them on the ground instead.
All days have felt like long days lately. This means I find myself wading through more and more mess as the weeks drag on, until I have to dig myself out over the weekend and return to some form of sanity.
Living in Portland it used to be easier. Or rather, I had a lot more floor space to fill up before things became untenable. But now I’ve moved my expansive Portland life back into to my childhood bedroom and there is very little wiggle room in either floor space or desk space. Things devolve from “slightly untidy” to “Death Star Trash Compactor” in very short order.
A couple weeks ago, when I found myself preparing to cast yet another t-shirt onto the ground in the desperate rush to get flat, I stopped. For no apparent reason, I thought about how putting the shirt away would be a kindness to Future Lucy. A gift.
I found myself thinking: “I want to care for this person.”
I wonder if this has something to do with becoming a caregiver for my dad. So many nights I find myself exhausted and ready to be unconscious, but I rally to do physical therapy with him, or make his smoothie for the following morning, because I love him and want him to be healthy and cared for, and also because he isn’t able to do those things for himself.
There’s a certain amount of distance I need in order to extend compassion to myself. Future Lucy isn’t here. She’s hanging around tomorrow morning, readying herself to face the day. I want to make it easier for her.
So I’ve started putting shirts away—although not without a certain degree of attitude. Usually I am muttering to myself, but I’m muttering about how this is a gift, and that it’s one I want to give because I love the version of me who’ll show up and do all of this all over again tomorrow.
Back on the Ramble train today. Well, technically a few days ago, but you get the idea. You can read the transcript or browse all the notes and associated ephemera over on Patreon (no need to pledge a dime), or just listen directly below.
October 22nd, 2021
[Rambles are typically 20-minute freeform audio updates recorded outside every couple of weeks. You can listen to previous Rambles here or subscribe directly in the podcast app of your choosing with this link.]
