When did I slowly then quickly start spending entire days out here? Sometime in early July, I think. I was in my garden for more and more hours, and when I was manic both before and after psychotic episode 1, I started staying up and outside later and later.

The brakes got put on that when my mom had knee surgery and I had to step in as caregiver. Sort of. I still spent a lot of time out here, where I have written the last two or three posts; just more hours inside than out.

She’s recovering rapidly and needs me less and less. We had a nasty spat a few days after she came home from the hospital (in which she hurt me pretty bad, which is often what hurt people do, needing something to yell at). I get it. But it seems in the end we needed some friction released and now our relationship is better than ever.

I attribute part of that to living out here. Being surrounded by native plants every day also seems to make me a better, more relaxed person. It takes a lot to rile me up these days, but even less so after a month and a half of living outside.

Part of that includes the effects of a native plant garden on your environment. Mine is quite large, and it’s a good 10-15 degrees cooler here, and on the higher end of that when I’m in the shade. I’ve been out here in the mid 90s and been relatively comfortable. Native plants also rule because they can dampen sound if planted wide and deep. It is indeed quieter in my front yard than in others—I’m friendly with almost everyone on my little street and spend a lot of time strolling gracefully with my beat-up blue cane and sitting for a chat.

But Wende, you might ask, aren’t you too sick to do this? Why, yes, I should be. But it’s having the opposite effect: I feel more alive than I have in a long, long time every time I look at my giant Hollow Joe Pye Weed late in the afternoon in soft shadowy light. The Rattlesnake Master’s spiky white ball of flower stirring in the breeze inhales deeply for me. Then I exhale. I smile a lot throughout the day.

I still deal with a lot of pain periodically, though. Nothing will stop that—not even opioids work on many ME (Myalgic Encephalomyelitis aka Chronic Fatigue Syndrome) patients. For certain types of pain, chronic or acute, there is no alleviation. That’s just life.

But my tent is quite cozy, with a nice camping pad and a very soft pillow comforting me, easing me into sleep very quickly each night. Some nights out here, I don’t even read (mostly listen to audiobooks), when I’ve relied on that ritual since childhood. My head hits the pillow and that’s all I need for all the lights to go all the way out.

This little adventure is doing me so much good. I recommend camping in your yard to everyone who has a garden or just some shade and a safe neighborhood. Camp more often than you usually do by using your backyard as a campground. Being out here with so much diverse life crawling and chewing and flying around me is nothing short of holy, a holy mystery. Every day out here, I see Cloudless Sulphur, Gulf Frittilary, Red Admiral, and various swallowtail butterflies. Caterpillars of some of them. Have you ever seen a Cloudless Sulphur caterpillar? It is the most beautiful green and yellow creature. The shades of each color sort of melt into the other, so the green is the kind you don’t often see. Ditto the yellow.

I see at least 20 species of bees and wasps everyday, feasting on the Mountain Mint and four types of coneflower. I often see the American Goldfinch on the latter, too, chowing down on the seeds in the round seedheads of spent flowers. I also see and hear Brown Headed Nuthatches, Cardinals, Eastern Phoebes, Carolina Wrens, Red Tailed Hawks, Tufted Titmice, and so on. I talk to them and mimic their calls. Sometimes they respond and we have the most delightful conversations.

I spend a lot of time doing absolutely nothing. Just sitting there looking at flowers or the sky or at shadows blinking or up under the canopy of a giant Shortleaf Pine. This is part of the reason I’m not crashing (having an ME episode): I sit and lie still a lot throughout the day. I love to make flower arrangements and other nature creations and can spend a lot of time on them. The rest of the time I spend gardening, reading, writing, and a little, usually in the evenings, looking at pink clouds and feeling lonely and nostalgic for life surrounded by people every day.

Tons of cool bugs land on me throughout the day. I once had a big black spiky caterpillar fall out of the Magnolia I often sit under. Didn’t hurt him at all when I swiftly swept him off my lap.

I prefer to call this process harmonizing rather than grounding. Harmonizing encompasses more of the important things I’m doing for myself. It includes learning, and a lot of it. Biology: I know the patterns of flora and fauna better, which fills me with even more wonder. The weather: I can predict it fairly well now because I know from cloud-watching that the wind usually blows toward southeast of here. I intimately know the lunar cycle, and it makes me feel things. I know the sweep of the sun across my yard. And I’m learning how to balance my spoons (of energy, in chronic illness community speak) better so I don’t feel too awful after exerting myself, at least in the short term.

And I’m deepening my skill for being quiet. There’s no need to make a constant show of myself. Step aside for awhile and let other creatures put on the performances. I’m listening and hearing better. All my senses are sharpening, even as some of them begin to fade from age and illness. A holy mystery.

In short, dear readers, I am content. I feel less doomed when I think of the future, though I am for certain always at least a little doomed. But I spend more time feeling broad and deep and at peace than I do despair, by quite a large factor. Yes, even as far as the crush I’m pining after. I’d rather let things happen as they happen than upset myself over them.

Please, dear readers. Get outside. Spend at least an hour outside each day (I know you must have shade for this in most parts of the world anymore). You don’t have to thank me. It’s better to thank the world.

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August

after Mary Oliver

My neighbor brings me plants

while I’m still prone to psychosis.

Episode 4 happened last night,

while I was rehearsing my song

to you. A satellite crawled

across the hazy black sky

and my first thought was wonder

wondering whether, no, wondering

what was being scraped

from my brain as it dragged past:

my soul, dragged up from my heart?

My poems? The secret of my life?

And a quick silver flash filled the whole sky

as I thought of the tinfoil helmet

I could construct to block and black out

the trawling machine however

many miles from earth. Flashed again,

three times in quick succession.

The sky was blinking back at me,

my mind full of misfires and magic,

the divine space being saying hello,

it’s okay, this is and is not real. It is Legitimate.

And it departed as fast as it arrived,

just a few quick sky blinks and winks

as my shining silver mind

blinks back

at my unseeing neighbor,

at my own eyes.

Blinks black.

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I’m looking out the window now, having peeled open my blackout curtains. The world is bright today and giving me a headache, which also matters, but when I step outside the light and wind heals me all the way through as my dog takes my hand, and the Southern Magnolia takes my hand, and Cumberland Island reaches out across 20 years from the wild horses in the dunes to take my hand, my neighbor Paul and my neighbor Adrian and my neighbor Cliff take my hand, the red oakleaf hydrangea leaves take my hand, the yellow pignut hickory leaves float down to take my hand.

We’re all together at this stormy cliff in Oahu with my brother in 2019, the one that leaves me speechless until I finally address her and bow and say, your majesty, to the storm-conjuring cliff and jutting rock formations and the foaming crashing waves, and I bow to the ghosts drifting north to the night castle glowing with candles and cooking fires. The warm peace brighter than the sky. It matters more than you can know.

But I'm now very accustomed to having no future. Obviously, not factually true, but true it remains. During your third month in bed, the future is like the stars. They're out there beyond the blackout curtains and the windows of this room. Shining from long ago. You don't have to be there to see them. They'll shine with or without you. The future ticks by while you lie very still.

I didn't even remember the moon. I saw it again this past month and said, "Oh". and stared at it for a long, long time.

Proust had spring flowers. I have stars and moon. And music, oh, music. Two years since I last listened. Before that: Four years. No music for six years. None could be tolerated any better than bright light or strong smells. It had become harm when it had always been balm.

So when I mention future vibrations, I am grappling with a concept I no longer understand. Not fully.

A theory: studies have shown the future exists and I have one. But I have, from time to time when it's close to unbearably painful and exhausting and devoid of hope,, considered Switzerland and going out my way. At a time of my choosing.

I'm not there yet, nowhere near it right now, and I may never be. I'm not going anywhere for now.

But I deserve a Switzerland because I am a human being who lacks infinite tolerance for prolonged pain and solitude. I deserve Switzerland if and when I need it, and so do we all, who suffer day after day our whole lives. It's a subject much discussed in the ME (Myalgic Encephalomyelitis aka Chronic Fatigue Syndrome) communities. A woman in a WGI / ME Action Network writing workshop broke down on the last day and said she had booked her flight and after writing together had changed her mind. We all broke down at that. What a remarkable thing to witness, a person deciding to stay. Can't really beat that as a life experience to be had..

So it also hurts to think about the future. How many dental visits have I had in the last three years? It starts and ends with zero. Days I've gone without bathing? Days I fell asleep hungry because I lacked the energy even to text my mother to bring me something to eat? And so on.

Even the word sounds weird: Future.

I want to be settled in it. I never want to be settled in it. I want one, but sometimes, not really. Sometimes the best I can do is accept it. To look forward is to see the exact same picture replicated a thousand times.

But the good times are really, really good. So good. And they are different every time round. They're shorter and fewer than the not so good times, but they're far more intensely joyful for that. Would never have met that joy without being handed a fat sack of pain.

The color of that is not silver, it's warm gold. A whole golden cloud.

And now it's beautifully disrupted. My future. Undulating out from the hollow in my chest, rippling away from and back toward me, completely unknown again.

So I have a lot to think about before proceeding with this agonizingly slow (please not too slow) courtship. There's a lot more at stake here, not only because it runs deeper than it ever has. Because that gives me something huge to lose.

Hanging on to it while I can. With buoyancy and even a little hope.

–Lust is two Love and lust at once is more than 10.

- Stomach: bloating

- Stomach: gassy

- Stomach: empty

- Stomach: highly highly acidic

   And so on.


-Brain.

-Heart.

-The middle.




-The light and small wind at day's end.

-The light and small wind just before and during and after twilight.

-Then there's another day.




- In the fingers.

- In the wrists.

on both hands.


-The feet.

- My God, the ankles.




- My heart.

- Upper back, oh God. 

- Lower back, radiant on bending

and squatting. As all gardeners do.



-Abilism:

   Lack of access

        -in gardening:

       Tools
       Supplies
       Wagons with broken handles, duct taped
       Equipment
       Gear
      Nurseries: lanes too tight
      Nurseries: all in full sun
      Nurseries: grow them from seed anyway
(#notallnurseries)

         and so on.



- Abilism:

in the federal government-

in The Social Security Administration 

of the United States of America*,

* The SSA under Trump*




-Abilism.

I*  clothing
I*  foot wear
I*  dining tables 
I*  stores
I*  grocery delivery services
     leaving the  bags
     right in front of the 
     goddamn door.

Angry underline of above.
But with compassion
for bad days at work.

-Fuck. 
twilight. 
Hafunu.

- Which is not his name.

Do

I say his name to myself-

not enough-

do, 
I write his name yet? I don't really know.



(I learn by doing)



Fuck. Arthritis.


-all hands and hips


-dimming blurring vision
-hearing is ok so far


I have to see you. Your face.

Your lean shiny body 

And so on.

And so on.

After Tony Hoagland

Summer is Bruce Springteen’s season. That and fall.

But sweaty small town bodies are all over his songs, whether stealing pleasure or stealing the justice that was stolen from them. Singing about railroad tracks and diners and veterans.

But sometimes it’s like Romans 8:26, the prayer God gives for you when you have only groans and moans to utter. We can’t even shape our mouths toward what we want to say and can’t say. Then it’s time for mmmm and ohhh and other wordless groans.

Screaming into rivers, teenagers leap from a too-high cliff and barely miss the rocks below, nearly bashing their heads with delight. That summer, though, she was too frightened to go, so she had hesitated and started again and hesitated and just sort of hesitated her way over the cliff for a straight drop down. We thought she was dead, but her blonde head bobbed and turned up to smile at us.

After that, we were all scared of heights. Except Tony, who leapt from the roof of the poolhouse when everyone was rolling on Calvin Klein, complete with CK stamped on the white pill. Later we writhed on the leather couch giving ourselves and each other endless embraces we loved each other so much.

Can everyone in

the entire world

take a nap

for about two

days

or longer. But

not shorter. Power

naps are simulacra

for capitalism

the great

slayer of sleep

We can be

blank, or we

can wander

in still waters

on a standing

paddle boat

looking

forlorn or at peace.

I wish you peace.

My WGI / ME Action Network Workshop friends and I try our best to meet once a month to write together. I can only go sporadically and not at all often, but when we met this weekend there was this confluence of energy radiating in and from our screens.

We first met last year in the spring cohort of the WGI / ME A workshops. We were grouped together with the lovely Ana Maria Jamolca and the astute and creative Lorne Svarc. We started our own group to keep the momentum going, and I’ve just started attending again.

On Saturday, we chose prompt #8 (Write a list poem about the human heart.) from this list. Then we each wrote for 10 minutes. Most of this came out of those 10 minutes together with Mich and Beth (hey friends).

The Human Heart

The human heart spills blood all over the body.
The human heart beats more slowly than the hummingbird heart. 
The hummingbird heart beats I think around 10,000 times per minute. 
I believe some hummingbird species cross oceans to migrate. 
I know for certain that a something lady butterfly does cross an ocean.
Though it’s not as far as you might think.
Because the coasts are somewhat close. 
The human heart nonetheless throbs at that fact. 
The human heart can be damaged by smoking, too much exercise, not enough exercise, eating wrong, eating too right, being vegan and mean to everyone about it, being a meat eater and nice or mean it doesn’t matter, having ME, possibly menopause but this is one area of rampant misinformation; for example, the human heart damage is not nearly as much of a risk of taking MHT, which I take, which does not necessarily protect the heart from damage either. 
The human heart beats nearly as fast as a hummingbird’s when the human is anxious, manic, in love, weeping from heartbreak, weeping from the despair of living with ME, psychotic, thrilled, frightened, etc. 
I felt my heart too much, too vividly, when psychotic. 
The Black singers’ voices came from a dark place to mmm-hmm and make other wordless noises from the distant dark. 
The hot shower makes the heart beat faster makes the mind swirl faster makes the voices more eerie. 
The human heart keeps hearing the wordless song, now and again, for two hours.
The human heart stayed calmer and slower than the first time it experienced psychosis. 
The hallucination made me just a little frightened after a while, then it made my human heart ache for whatever they were singing about. 
Me, it was me, it was my heart, it was my brain’s ears, the auditory hallucination. Did it come with an olfactory hallucination? Vaguely, briefly, maybe. 
Did it come from somewhere real? I know it comes from somewhere real where is that what is that when have I heard seen that.
The human heart slows as I ponder this. 
Where is the human heart under psychosis? 
Under the brain, under the body, outside the body, in the sky, in outer space, under car tires, underground, under the cedar tree where we buried our cat Sampson. 
The human heart digs deep underground to be warmed by magma. 

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I’ve been single for longer than I care to share. It’s not that big a deal that it’s been a bit longer than 10 years.

Quick note: It happened again last night, the psychosis. It was rather mild and I got through it with a little magic happenstance. I’ll write about it later, perhaps, but wanted you to know, dear readers, it happened, and I am okay, and for that I am very grateful.

*

The last real (semi-real) relationship I had was with a real jackass named Hoyt. A fun jackass, a lovable one, but a total fucking jackass. When I dumped him I said something to the effect of “go to hell and die again and fuck back off to hell!” It was some breakup. I had to buzz my hair off right after slamming the phone repeatedly. Or I would have if my cellphone had a cradle to slam it into.

It was maybe 2 years later the garbage truck got him as he rode his bicycle to a poetry reading in Queens.

Every Christmas, friends and loved ones wish us all a ‘Merry X-man,’ as Hoyt liked to say. ‘Life is pain,’ he liked to say. He also liked to say, ‘No Wende, you don’t fully appreciate In the Aeroplane Over the Sea yet, not if you’ve never heard it on vinyl.’ A very snooty affair, that album, his assertion. He was the antithesis of a snooty person in most ways, but not all. Anyway of course he was right.

We were drunk in his Brooklyn shithole. I think I ‘danced’ to Neutral Milk Hotel as well as anyone could. And The Pogues, The Pogues, The Pogues. Nonstop. ‘Do you know the Pogues? Do you love them? No one, no one loves them like I do.’ I play the Christmas song every year and think “Merry X-Man to you, jackass.”

Then there was a half-assed, half-hearted, short-lived thing with a really nice fella. We had less than zero chemistry. When I dumped him, he was like, ‘Yeah, I’ve been thinking the same.’ So we got wasted to seal the deal.

Then sparks sparked and flew with a lovely, lovely girl. A while later, another lovely, Gosh so lovely girl. A couple of flings. A very handsome, deep-browed Sri Lankan w/ extra white teeth in Tulum. We all went dancing and, well. Tension had already been steadily building. So much fun.

The next day I saw him checking out and he said, ‘See you around, I guess.’ I was like, *chuckle*, ‘No, you won’t, silly’.

Which is why it stays perfect forever in my mind.

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Fast forward to pale and sickly me with ME today. From here on out, it’s going to be quite frank, so buckle up.

Sex—it’s fucking complicated. I’m no longer capable of anything more than starfish, which I very much hate. Especially because I’m perimenopausal, and what they say about libido effects is 1000000000% true. Gosh.

And so, I satisfy that semi-regularly, but, just like everything else, it wears me out bad. Muscles seize up in pain the next day. Also, because perimenopause makes me overheat, which also exhausts me. My hand gets weak, can’t do the job or finish it, everything feels like I have the flu. Sorry, I get ‘the flu’- when I feel like I have the flu but its just good ole ME messing me up in all her creative ways. I don’t need to have the flu for the effect. It’s a common shitty symptom: sore throat, swollen lymph nodes, sometimes a fever, watery eyes, achy limbs and entire back, etc. I can’t move at all when that happens.

How about meeting people? When you never leave the house, how do you even go about meeting people? ‘Hey, you’re cute. Wanna come over and watch me sip tea in bed?’ So enticing, right? Did I mention I need round-the-clock care? Am facing financial ruin? Don’t even have health insurance anymore? Etc etc.

Then there’s my beloved little turd of a dog, Yoda (for the ears, not the wisdom). Everything is his: his brother (Mac), his black & white Maine Coon cat, his blanket, his dish, his bite of Mom’s salmon/tuna salad sandwich, her yogurts, her apple, etc.

Would he like Mama to have a companion? ‘Nope,’ he says, ‘We have enough here, thank you very much.’ He’s a chiweenie—a cross between the 2 stubbornest dog breeds: chihuahua and dachshund. Very cute, very enthusiastic, strong-willed, and stubborn as all get out. Loves people unless they try to get between the two of us. Hates dogs. My little Napoleon.

He’s been through a lot, with and without me. He stayed with Dad through years of sickness till he died here on hospice. Didn’t leave his side until they came to get the body. He was heartbroken for a long time. We still talk about Grandpa and him sometimes, just me and him. Father’s Day recently passed, so we’ve been talking.

He’s my baby and so is Mac the giant cat. I would not be safe to be around if anyone did anything to them—full mama bear mode just at the thought.

Is my life full? No, not even a little. Am I lonely? Stupid question. Do I long for human-to-human touch? Good Lord, yes. All the touch—hugs, shaking hands, flirty slaps when you’re being such a card. Mom’s always good for a hug, of course, when I’m up for it. Which is and is not enough.

My MFA friend J.D. once drove me to Connecticut to see a mutual friend’s graduating exhibit at Yale Visual Arts. An incredible painter, that Steve Buddington. Still painting, I’m sure. His wife Penny’s still poeming, also amazing, dazzlingly.

As we went through a toll booth, J.D. said he always makes sure to touch the toll worker’s hand when he pays. ‘Humans need to touch each other,’ he said.

I wonder how he’s doing, how they’re all doing.

So basically, the odds are stacked incredibly high against finding, getting, and keeping a mate / mates.

Am I okay with this? Do I have a choice in the matter?

Yes and no, as with every sacrifice ME made on my behalf. Could it happen? Sure, of course, anything could. But I’m not holding my breath, though. It’s way too hard to hold my breath. Why would I do that to myself when there is so much else to love here on Earth?

But it wasn’t sudden in that I have lived with bipolar disorder since approximately 2003. Before that, I had lived with unipolar depression since I was around 11 years old. I’m 47 now, so that was a long progression of being more or less nuts. As AI lady said, it often builds over many months, years, and so on.

I don’t think I can write about the break just yet. It was euphoric, it was terrifying, I hallucinated and hyperventilated, had all the delusions (of grandeur, the paranoid ones). The light didn’t make sense. There was a bit of synesthisia going on and the light didn’t smell right either. But then it smelled absolutely incredible, the air too, and the birds were delicious while singing.

Nothing in nature frightened me; I spent nearly the whole time in my wildlife habitat garden doohickey. So there was a lot of natural stimuli, which was very smart to put myself in to keep me centered. I called my psychiatrist and a number of friends to keep me more centered and safe (which I was, the whole time). Some friends really stand out. Well, really one, because another friend pointed out that when I spoke of that person I slowed my breathing and rate of speech. Which made a lot of sense. The friend got quieter and quieter and listened very very attentively and did not challenge a single thing I said. What a guy.

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Anyway, later in the evening I wrote whatever this is. This was clearly day 2 as I was winding myself down into sleep finally (none for 48 hours, give or take). No edits have been made for clarity or to make myself feel better. I only remember writing the thing about Succession’s Roman “Romulus” Roy. I have zero recollection of writing the rest. I was partially in my right mind, as you can see, trying to spit notes out while the ideas were in my head. The creative leaps were fueled by psychosis.

Don’t expect anything big and profound—it’s decent, I’ll give you that. But I don’t know what exactly it was or is at all, and I think this is all I will ever do with it. I don’t want to see it again, so here, you can see it.

Enjoy?

***

Notes on

A note on money: Roman Roy sits alone in the Burger King on Memorial Drive, weeping all over his “food”.

A note on music: Baron Trump once tried to play the clavichord, something clever sofny funny other funny stuff then moving stuffst uff

A note on Wende: when she was fifteen she worked at the Waffle House in walking distance from her home off Pleasantdale Road. She was always sweating into her yellow uniform shirt and maroon apron. Lotta sweat, those walks. There was a baby blue Ford something something car in the parking lot every single day. Lurking creeping something something George his name was George.

A note on Myalgic Encephalomyelitis: something something that happns can be measured with another thing. Normal range is this. Patients with ME fall in this range. The effect is that.

I love Jurassic Park. I have loved it for many years, and love it more every time I watch it. I remember seeing it in the theater back in 1993 when I was 14 years old, and I remember seeing the second one at the Starlight Drive-in theater, though that was much less memorable for a number of reasons, chiefly that it’s the first of way too many terrible sequels. I was also stoned out of my mind, smoking with my boyfriend of way back (hey Lane). Here I will end the conversation about the sequels.

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I love Jurassic Park so much I want to hug the whole movie, the soundtrack, the sound effects (did you know the dino sounds were a blend of non-extinct animal bleats? Examples include elephant trumpets, baby dolphin grunts, tortoise mating calls, hissing geese, and whale blowholes, to name just a few), the practical! visual effects that still impress me over 30 years later, and the whole cast. But nothing and no one is there I want to hug more than Dr. Grant, played by the ever avuncular Sam Neill. C’mere, Dr. Grant. Everyone else, get in here with us!

My mother and I love paper calendars hanging on the wall. Both of us are a bit ditzy about today’s date, as all unemployed/retired folks are. Last January I got a super cheap cute calendar featuring the fruit of the month, which was also an 18 monther. Which meant we needed a new calendar for July. There are plenty of 6 month calendars and 18 month calendars that begin in July, but I decided to go with a regular 2026 one once I saw this Jurassic Park beauty. Behold!

As soon as it arrived, she and I sat down at the dining room table and giggled and gasped as we flipped through it and we agreed we had to rewatch it right away. I made a delicious salmon/tuna salad and she baked some sweet potato fries to dip in bbq sauce (try it), and away we went to the land of Isla Nublar.

What’s to love about it? Let me count the ways, some of which may surprise you. Others you will disagree with me on, and it’s okay if you’re wrong I don’t mind. Anti-capitalist themes: greedy Scottish Colonel Sanders moved fast and broke things to make his fortune, and the lawyer’s eyes light up with dollar signs to the sound of ching ching ching ching when he sees the deadly extinct creatures live and up close…at first). A stupid lawyer who thinks lamb chops come from a goat and says “are they auto erotica?”

Plus, the old scientists vs profit thing, and the doom of all non-profits: making unfortunate begrudging bedfellows for funding. I don’t miss that at all, much as I miss working for the International Rescue Committee in a previous career / life as an adult ESOL instructor for 11 years.

Green jello trembling in a spoon. Velociraptor claws tap tapping on the kitchen floor, a metal spoon tap-clanging back. ‘Hold on to your butts!’ ‘Dodson! We got Dodson here!’ ‘That doesn’t look very scary. More like a six-foot turkey.’ ‘Life, uh, finds a way.’

Best line of all, perhaps of all time: ‘Clever girl’. And she really is quite clever, that devilish grinning Velociraptor. You can tell from the very beginning of the movie, when she eats the first victim. Yes, naturally, it was a black man. Sigh. So was the first victim of the second movie. I wonder if they’ve evolved over the years and sequels…

And Laura Dern digs shoulder-deep in a pile of shit. A little bit smears her inner thigh as she looks quizzically at the shit and holds a conversation with herself. She’s tenacious, says Dr. Malcolm. You have no idea, replies Dr. Grant.

Favorite death? Tough choice. Probably the lawyer, but Nedry’s death is immensely satisfying. Especially because he underestimates and insults the Dilophosaurus, who is indeed terribly cute, but also a dinosaur and dinosaurs gotta eat. The venom shot straight at his eyes was the best. But the lawyer got plucked off a toilet by a T-Rex, for chrissakes. That’s pretty hard to beat.

Smarter than everyone around her: Laura Dern. The men think she’s playing right into their pervy hands while she’s 18 steps ahead, just letting them think she’s a silly dingbat who doesn’t know anything about chaos theory. Gosh, that went right over my pretty little head!!!

Best injury? Tim’s electrocution, of course! So cute when he comes to and says ‘three’.

Best gross moment? Brachiosaurus sneezes on Lex, sprays her with dino-snot. Best character on the spectrum? Lex again. Trust me, and watch it / again. I’ve verified this with at least two fellow neurodivergent fans. She also happens to be THE HERO that saves everyone. A girl. In 1993. Also, she’s cute and awkward and I wish I was her mom a little bit.

This list goes on and on and on. I haven’t even mentioned the very young and trim Samuel L. ‘Hold on to your butts’ Jackson, the chain-smoking white-coated nerd, except in quoting him.

But I got a bad headache halfway through and had to quit for the night. This happens a lot a lot a lot. It’s very hard to finish watching movies—I get too tired, a headache from the light and/or sound stimulus, nauseated, horribly constipated, diarrhea, painfully bloated, and/or I can’t hold my head up any longer. Which is why I watch so much TV and so few films anymore.

We finished it the following night, to my immense satisfaction.

What else brings the joy? Let me count these ways! Top of mind series, films, books, and other fine things: TV: Succession; Mr. Robot; Books: Sapiens; Murderbot (book AND series—who better to play a socially anxious robot than Alexander Skarskarsgardson); The Ballad of Black Tom; the Bruno, Chief of Police series; entire Dune series; Persepolis by Marjan Satrapi, Gods rest her soul; any and everything by my teenaged self hero Lynda Barry; the Scripps spelling bee; good coffee, good dark chocolate, popsicles, dragonflies, oh the dragonflies, green anole lizards, skinks, chipping sparrows, cicadas, smelly candles, copal incense, rosewater sprayed or poured all over me, my mini ponds, my whole garden, Lizard’s Tail, Rattlesnake Master, Downy Skullcap; comedians: Josh Johnson and Tina Friml (a “cerebral person”, very charming and cute as well as funny as hell), ceiling fans and the noise they make, Color ATL coloring books, thick Greek yogurt, pickles and olives, kimchi on sandwiches, peanut butter with every meal. Very very cold water in my cup. Bad disaster movies, especially the infinitely rewatchable Day After Tomorrow. Vince Gilligan shows, all of them. A small handful of YouTubers (J Johnson again, T Friml again, The Welsh Twins, Philosophy Tube). Cobalt blue nail polish. A good long uninterrupted sleep from which I wake, eat breakfast, and go right back to sleep. Sleeping for three days. Showers. Very long epsom salt baths. Spekshuns (Yoda and I inspect the garden every morning I am able). Sun hats. My favorite pair of gardening gloves. Bird bath. Hummingbirds. Caterpillars.

DeKalb county public library (esp. downtown Stone Mountain and Clarkston branches), the Libby and Hoopla apps. The main letdown I’ve experienced with those is the impossible absence of the audiobook Jurassic Park. Wouldn’t that seem like standard library fare? I tried listening to another Michael Crichton book that turned out not to have been written by Michael Crichton. It was super interesting but some bad writing and a plot that hinges on some pretty hideous ableism plus white saviorism. Made me sick to my stomach. Give us disabled villains. Do not make them all become villains because they’re disabled. C’mon, join me in the 21st century.

Anyway, I may one day have to just go on and pay for the audiobook to deepen my obsession with good ole JP. Or? A sweet generous reader could gift me the audiobook one day…I wouldn’t mind that at all.

Yours always, my dear readers.

Wende

Thanks for reading this far. If you enjoyed this letter and want to read more of my work, please consider subscribing. Nothing is paywalled, but if you want to support the hard work of writing about disability, ME (Myalgic Encephalomyelitis) and Bipolar Disorder, consider a paid subscription at $60 per month, $50 for a year, or $150 for a founding membership. I do this to advocate and to support the wider disability community, especially those with ME. Thanks again!

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For another, and I wasn’t expecting this, my second hypomanic episode of the year started shortly after my last letter. Maybe the next day. Why wasn’t I expecting this when this is just how bipolar disorder works? And I’ve been through this zillions of times since onset in 2004? Every time I recover from depression I go straight into mania. Every time, no exceptions, it just is, all of it just is. And nearly every time it happens, I wasn’t expecting it.

Part of that is the nature of the disease—mania always strikes quite suddenly and accelerates rapidly until you’re speeding out of control. It’s fun for a while, very good fun. All these ideas keep popping into your head so fast you can hardly write them down before another one comes along, and they all seem brilliant, the best ideas you have ever had, everyone will love this. Sometimes that turns out to be true. But when it gets severe, it’s almost completely untrue and people start looking at you like you’re crazy. Because you are. Crazy. And by that point you’ve begun losing touch with reality and zooming off into outer space.

Thankfully, it has been a very, very long time since I’ve had a manic episode like that. Medication works. So does experience and self-awareness.

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ME (Myalgic Encephalomyelitis aka Chronic Fatigue Syndrome) has thrown a mighty wrench in the works, though. The way this disease functions. You get episodes of extreme, debilitating illness, and then you come out of those and feel better and want to do every single thing you missed out on while you were in bed. This is universal—pretty much everyone with this and similar energy-limiting diseases make the same mistakes over and over and over again. The trouble is that every time you push past your energy envelope, you add to a debt that can never be paid. You can’t rest your way out of the damage done by too much activity, so overdoing it chips bits of you away and more bits of you away until there’s hardly anything left. Doing just that vastly increases your chances of developing extremely severe symptoms. There are people out there who can’t even eat. They’re so weak and fatigued that swallowing is impossible, so they survive on feeding tube substance. A lot of them can’t tolerate any noise or exposure to light, but they require caregivers who need light and make noise while doing their duties, and so on. The most well-known example of this level of severity is Whitney Dafoe, and his story is so very heartbreaking.

No one wants to end up like that. Whitney certainly didn't; he was a very talented photographer and traveled widely, snapping gorgeous pic after gorgeous pic. He was so young. It’s my greatest fear, becoming extremely severe. By a lot. I used to fear all sorts of things, but I don’t fear them so much anymore because all that terror is concentrated on one thing only. This of course isn’t entirely true, but it feels true.

I am more prone to winding up an extremely severe case due to a most unfortunate comorbidity. Again, mania is losing control of yourself combined with rapid fire impulses to do this and then hurry do that before you forget your brilliant idea!!

But. ME hastens the end of manic episodes because it causes us to crash pretty quickly. I would never ever refer to this as a silver lining. There are no silver linings here, and I find the whole concept dismissive and more comforting to others in distress at the sight of your unwellness. It just is and is and is. Like so many things are. It feels like this has already happened because I crashed two days ago and haven’t able to rush around fulfilling Life’s Purpose. I’m still doing much more than I should and struggling so very hard to control myself. But I’m at least spending a lot more of each day in bed. I really shouldn’t be writing this right now, but I can’t not. It’s good to read over it a few times and see no (or little?) evidence of said mania, even though I can’t trust my own mind to judge such things. But writing this will lead to a longer crash.

What has helped me the most this manic episode is self-awareness. Maintaining that is extremely difficult in all severe psychiatric states along the spectra of mania and psychosis.

A remarkable thing is happening on social media these days: people with all manner of illnesses record themselves when symptoms flare. I will one day have the courage and planning and, somehow, energy, to record myself in a severe ME crash, but until then there are a number of examples out there. Not many, of course, because of the energy problem. At our worst, even pressing record is too much.

Recording yourself during mania or psychosis is also impossible, but in very different ways. I don’t know if I would want to see myself manic. Probably not. But people like SkizoKitzo are out there doing the good work. I’ve watched a handful of her psychotic episode videos and been in awe of how aware she is of what’s going on and the fact that it isn’t real, she’s just hallucinating and delusional, but it is very clear that she is nonetheless incredibly frightened.

There are some similarities to maintaining self-awareness during a manic episode. I tell myself repeatedly to slow down, stop, put it down and walk or roll away and get back in bed; that my mind is, just for the moment, beyond my control, but I should still continue telling myself this and to try to stop myself. It doesn’t always work, but sometimes it does.

The fear is very different. Full blown mania is fucking terrifying; hypomania is less so, but still scary. Both states often lead to deep depressive episodes, and full mania can lead to much worse than that. It also feels like it is leading to much worse than that.

My particular hypomania is terrifying because I don’t want to end up with a feeding tube and wearing diapers. It’s all survivable and I am surviving. But who wants to merely survive? ME is very, very hard to survive. There is some debate as to whether or not it can be fatal in itself, but there is no doubt that many patients don’t survive because what is life in bed? Always in bed? This is a constant question when I’m at my worst.

Here comes another 'don’t call it a silver lining: I’ve completely stopped reading and watching the news. The world inside my head is full of its own news and broadcasting 24/7. Most of it feels very good at the moment. Especially when I go out to my garden and get the good news from the birds as they splash and sip from the birdbath and pluck berries and seeds from shrubs and forbs. This is the best news.

So I’ll keep sharing the news for as long as I can; I shared less good news today because I’m exhausted and annoyed with myself for wearing my poor body out yet again. I’m hoping not to crash so hard I can’t write to you for a long while, dear readers. It will happen; I just hope it doesn’t happen for at least a month. Maybe two? I’ve got my eye on two. Please keep your eyes on two months with me.

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It’s been a minute, dear readers. It was a chain of events. Mostly hard ones. I'm mostly better now, so here's where I've been.

First, The Updates. Skip all the italics if you wish. But I’d love you to read this part, too.

When I started this stack, I wanted it to be a place to “publish” my poetry since submitting to mags and journals takes much more energy than my sick body has. But I’ve finally decided to prioritize writing about ME here. It is, I hate to say it but also don’t, more important to me than my poetry (for now). At least to put out into the world, because most people still have no idea what Myalgic Encephalomyelitis / Chronic Fatigue Syndrome really is. Some people think they know, including most western doctors, but that’s the problem: they don’t know, are often Big-Man-with-Brain,-you-peasant about it, and dismiss it with a “here’s some Prozac or some shit, come back when you have a real problem”. (By the way, a Big Man with Brain comes in other genders and sizes.)

So here I am, er, educating the public, and sharing my ME story so my fellow patients can find a little solidarity, a little I’m-not-alone-after-all. There are already some really great ME stacks here, and will list them somewhere soon. But the more the merrier! And sometimes I’ll throw in a poem about living with it.

To this end, I’m hereby requesting paid subscriptions to support this project. I am very, very, extremely broke and my financial future isn’t promising. Also, writing takes years of training, practice, heartache, self-doubt, passion, despair, and thrilling sense of achievement to write as well as I do now. It also takes a long time and a lot of spoons (full of energy, that I might need for an essential task like brushing my teeth). So, please help if you are able and inclined to do so.

That said, I really very much dislike the idea of pay-walling, as a general rule; but especially since half my intended audience is unemployable, or lightly employable, barely employed, and/or permanently unemployed. All newsletters will remain free of charge.

Thanks, as always, my loves.

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First, a tiny hypomanic episode—a half-strength manic episode (I have bipolar disorder—pole a: mania; pole b: depression), which is the new typical mania-strength since I developed ME (Myalgic Encephalomyelitis aka Chronic Fatigue Syndrome) struck towards the end of January, kapow! which was then intensified by intense, deep anxiety. All of that happened within a couple of weeks. The anxiety: Do you ever blow a little maybe not even really mistake way out of proportion? No? Just me? And it was all very confusing, further complicated by ME symptom cognitive dysfunction→slower reaction to what someone says. Guilt was not far behind, propped up by a scaffold of Gender Hangups, then disproportionate grief. So then, you guessed it, Depression came slithering her nasty self in. You know how big D is almost always inextricably linked with self-absorption/obsession, at the expense of compassion for others? It’s a time when we need more than we give, we forget what others need, and maybe you say to yourself you suck even more you selfish turkey, but those others love you every time and there’s nothing to apologize for because you would do and do the same for them?

But D also helped me because I did nothing much for four months, which ME patients need to do anyway. Some coloring, inattentive reading (mostly scifi trash), lots of TV and movies across a very wide quality spectrum. Played games, mostly NYTimes games to help me feel less stupid (so pretentious!), got good at sudoku then forgot how to be good at it anymore. It made perfect sense then it didn’t at all.

Stayed inside. Walked Yoda a few times, shouldn’t have, but poor dog almost never gets walks anymore since both Mom and I are too sick/in too much pain to take him (more guilt lol). But mostly, I laid around on my rather flat ass.

I sorta half-worked in the garden a few times, which was of course a big mistake because it takes way way too many spoons to garden, then I have no energy left for things like work, bathing, etc. It sucks. But! I read somewhere I don’t recall about how depression actually makes sense in terms of evolution: sometimes you do indeed have a bona fide problem that you’re causing, but instead of despairing forever you might emerge from your sad-hole figuring out or having already figured out how to fix it. And until then you’re homebound and away from all the germs and viruses, preserving this sad sack of a human species (who will hopefully not in future generations wind up being sad sacks, who might live and wallow longer). Anyway. The gardening was all half-hearted because I’d finally accepted that it was pointless. My body simply needs to stay at rest more, yank up weeds and dig holes in the ground way less, as in not at all, most likely for life. So I tiptoed down the path from devastated to begrudging acceptance.

But! I’m writing to you today because the clouds are finally parting and I’m doing so so so much better now. Big guffaw-laughing moments, even. In part thanks to my wonderful psychiatrist bumping up the dose of one of my mood stabilizers to get me out of the sad-hole. All very great!

Very great! And then, well, thoughts and feelings come gushing back in whether I’m ready for them or not, whether I’m trying to rest or not. It’s all ‘bing bang boing bop!’ in the ole noggin, I can’t concentrate on the audiobook I’m listening to to ease me into proper rest bla bla bla. But!

But! The last two days have been much better, and I can concentrate on the excellent self-aware True Crime book Peepshow again, and I’ve been resting very well. Life sucks a little less each day.

“The world”, aka shithole, as poet Maggie Smith reminds us, “is at least 50 percent terrible,”. Even so: “this place could be beautiful … you could make this place beautiful.”

Lots of love,

Wende

-Samuel Beckett. Image courtesy Internet Archive

When your body is disabled, and some of your abilities have been removed, you spend a lot of time grieving for what your body could do before, for how little your body can do now.

When your body immigrated to the United States, you may have been both terrified and full of hope. Your body may have been on a very long and treacherous journey without enough food or the right clothes for the trip. Your body may also have been doing just fine before, or it may not have been doing well at all and urgently in need of medical care. But your body is in its new home now. Your body may have thought, at last, we have arrived, we are free.

Your immigrant body may not have been prepared at all for assault, kidnapping, confinement, abuse, torture, or murder. Your body may have thought you’d finally arrived somewhere safe. For your body, for your children’s bodies.

And if your body is white, you may not have been conscious of how safe it was or for how many centuries it was safe. Safe as houses. At least from white supremacy, right? Your body hates white supremacy, but it has also benefited from it your entire life.

But now, finally, as multiple videos from multiple angles have shown, your white body is no longer safe from white supremacists. The outrage has finally joined the fear bodies of all other colors have known for a very long time.

The federal government has drawn the line, however haphazardly, and your body is now on the other side of that line whether you want it to be there or not. Two white bodies slain in the cold. Lots of videos show exactly how and when they died and who was holding what and who was not at all a threat. Two white bodies, dead in the cold. Amongst a lot of bodies of other colors who died for less. Just for being where they are. The bodies absent from the videos.

So what are you going to do now? You are going to do something, right? You know that you must. The Democratic party isn’t doing anything other than talking talking talking, so it’s up to us to take action. There are so many bodies on the line that have been on the line for longer than you’d like to admit. Are you going to put your body on the line to stand with and protect those bodies?

Of course I want to. Yesterday afternoon, my heart rate while sitting up in bed was 100 BPM. I check it semi-regularly because a symptom of Myalgic Encephalomyelitis (ME) called orthostatic intolerance causes the heart rate to soar when upright, and the more upright you are, the higher it soars. Sitting up, standing up, and especially walking cause my body to act like it’s under attack. The best solution is to lie back down, so I lay back down. I had a poetry class to teach and needed my body rested and ready to do that. Likely, the OI was helped along by a massive dose of anxiety, and my body also cannot afford to give in to strong emotions. Those cause me to crash just like physical exertion does. Just sitting there, I was in trouble, so lying down immediately and shutting off all stimuli was in order.

And of course I picked up my phone eventually. I read and responded to post after post in my ME social media support groups saying what can we do? How do we respond? Why do we have to be trapped in our bodies now, can they not make exceptions for criminal injustice on a mass scale?

They cannot. So the same list that’s been running through my head got repeated back to me: write and call your congressfolk, sign and start petitions, make signs to give others on the way out to the streets. And we all agree we want to do all that and more.

Some of us can, and some of us can’t. I need the able-bodied need to sit still and listen: when we say we can’t, we mean we can’t, and no amount of encouragement or dismissal or even support will change that. I can’t do anything on that list. I promise you, I’ve thought about it a lot more than you have, and the answer is no.

Except write. What do I write? Where do I send it? How do I find the words, will they have enough force, will enough people read them, will anyone read them, will anyone feel galvanized or inspired, will anyone find hope, will I find hope?

So I decided to start with the questions, start writing them down, asking myself and asking others. And in my own internalized ableism, I hadn’t even considered how dangerous it is for bodies in wheelchairs to take part in any protest, let alone with ice all over the ground. That form of resistance remains as inaccessible as it ever was, more so in winter, and there are a lot of folks in wheelchairs who have the energy, strength, passion, and determination to show up.

It shouldn’t be on us alone to figure out where to take our wheelchairs when we show up for the resistance. But it’s the world we live in, so here we are, all trying to figure it out amongst ourselves because we’re desperate to make our voices heard. We long to be with all the able bodies putting their lives on the line to protect our fellow Americans, all of them.

There’s a lot for all of us to figure out. We all need to show up, and a lot of the people you don’t see on the streets are grieving the fact that we can’t be there, too.

In pondering your role in the resistance, make some room to consider the roles the unseen want very, very badly to play. But above all, consider the danger disabled immigrants, Native Americans, Black Americans and all Americans of color are in right now. Stop and think about the ones who can’t run. Try sitting with it. If this doesn’t scare the shit out of you then something is very, very wrong with you and I hope you can find a way to fix it.

Standing and marching and holding signs and shouting and recording videos are the glorious privileges of the able-bodied, and it’s beautiful to see so very many bodies in the streets of Minneapolis and beyond.

We cannot let these viciously cruel jackboots take those bodies. We can’t let them take any more bodies. We have got to do something because so many American bodies are at stake.

Whatever you do, think about what it means to stand up. I think it’s time we find better words that embrace all forms of resistance than stand up. I’m lying down, and I do not want you to stand up in my stead, nor do I want you to stand up because I can’t. That’s erasure, so don’t. I’m already standing up in my own lying down way.

A lot more people than you realize are lying down, furious and hurt and ready to fight. What do we call that? How do we call not just able bodies, but all bodies to action?

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I live with other potentially disabling conditions alongside ME (Myalgic Encephalomyelitis) that don’t disable me, and the one I’ll discuss briefly today is bipolar disorder type 1, which was diagnosed in 2009. I have taken a variety of mood stabilizers for this over the years, including anti-depressants, anti-psychotics, and an epilepsy medication that gets prescribed off-label. My current cocktail has worked well for me for the last 6 years or so, and I am as stable as I can be. Of course, there are weird and dangerous interactions between bipolar disorder and ME, but that’s a story for another time.

I no longer take anti-psychotics because they just didn’t work for me due to, you guessed it, side effects. But fortunately Lamotrigine, the epilepsy medication, does the job and keeps me steady with no side effects. It can cause a deadly rash that sounds horrifying, but as long as it’s caught early it won’t do the horrifying thing. Plus, doctors and pharmacists are eager to warn their patients about this, even though it’s rare.

On the other hand, they fail to do the same about the rare side effects of anti-psychotics, benzodiazepines, and, perhaps surprisingly, SSRIs and even antibiotics.

Let me be clear: these medications save lives. They have saved mine. Mania / depression cycles are features of both bipolar disorder and the bipolar type of schizoaffective disorder. Both sides of that coin are extremely dangerous and impossible to control without medication. Some patients don't survive.

But I have heard a lot of harmful recommendations to do things such as yoga or B12 shots instead of all my life-saving medications. These are but a fraction of very bad suggestions I sometimes get, to go outside the bounds of Western medicine. I do not, however, dismiss all such treatments and recommendations. Believe me: I completely understand why people so often leave Western medicine behind altogether

For example, the dangerous side effects of some psychiatric medications are not accompanied by sufficient warnings. Some are listed under the vague umbrella of “movement disorders”, a term that sounds like a minor inconvenience. None of them are that. Restless leg syndrome makes it impossible to sleep; tardive dyskinesia makes it impossible to control facial expressions and hand gestures. The latter side effects is disabling and humiliating. I’ve seen it a few times in support groups. One guy couldn’t stop rubbing his hand under his belly like he was caressing a basketball, causing more distress on top of his disease.

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Of all the drug injuries caused by psychiatric medications, akathisia takes the cake. Cleveland Clinic defines it as “a neuropsychiatric syndrome and movement disorder that makes it difficult to sit or remain still due to an inner restlessness.” It’s a decent definition except the word difficult, which is highly inaccurate. Impossible is accurate. And it can be acute or chronic, caused either by the medication or withdrawal from it.

“Inner restlessness” is likewise a euphemism for the terror that is having absolutely no control over body movement. The urge to move is unstoppable, especially when trying to sleep. The urge gets much worse when you try to control it. The euphemism also skips over the mountain of doom you can’t see past, and it’s the worst doom, the kind in which you know something really, really awful for the whole world is about to happen and you can’t stop it. All while sitting down, then lying down, then jumping, standing still, pulling your hair, rocking, and so on. Many patients describe it thusly: You want to jump out of your skin.

That word jump also indicates the type of suicide patients choose when it gets that bad. Worse, some are driven to homicide, not out of hatred or as a consequence of their illness. As a consequence of akathisia. Such is the utter terror and despair of the disorder: anything to make it stop.

It’s hard to describe the desperation of this condition. I was in it for three days, deep in it, and I never slept. That was beyond impossible, since lying down made me kick and thrash until I jumped out of bed. Keep in mind that most patients have no idea what’s happening to them, have never heard of akathisia, and worst of all, get written off as manic or psychotic and prescribed higher doses and/or more drugs, sending them speeding along the road straight to hell. I had no clue at first.

To this day, I have never experienced anything as terrifying or painful. I’ve never been in greater danger. I still can’t articulate some of the thoughts I had and couldn’t control, which is for the best and helped me move past the trauma. Worst thing that ever happened to me, very likely the worst that ever will.

But I was lucky: it only went on for three days because a) I figured out what was happening because of a book I’d read a few years ago by the wonderful poet Sarah Manguso called The Guardians: An Elegy for a Friend; and b) my psychiatrist also knew what it was and told me to immediately stop taking Geodon, the atypical anti-psychotic I’d been forced to switch to because my insurance company had suddenly stopped paying for the one that was working just fine. She also prescribed a Parkinson’s disease medication that ameliorated the movement and tremors, with which I could finally calm down. And fought my insurance company to pay for Abilify.

Only three days? Yes. Sadly, it can and often does go on for years. This is why I rarely share the three days bit with other victims of akathisia. Some of them took a single dose and continue shaking and thrashing seven years later. Completely disabled, often completely isolated as well since it's overwhelming to witness someone going through it. I still check in with support groups on social media from time to time because they need to be heard, validated, and soothed. It’s what I needed, but thank God I didn’t need it for long.

The syndrome, which is described by akathisia victims as torture, hell, the devil, unbearable, evil, terrifying, horrifying, worst ever, and so on, shares some significant features with ME, chief among them being the prevalence of medical gaslighting that puts patients directly in harm’s way. For example, ME frequently gets written off as depression, and patients are prescribed anti-depressants which can significantly worsen the condition. Some doctors still tell us we need to exercise, even though there is robust evidence that Graded Exercise Therapy makes ME and CFS (chronic fatigue syndrome) much, much worse.

This is due to the dearth of research from lack of funding and medical provider ignorance, and/or lack of care, and/or superiority complex and “I went to medical school for bla bla bla and studied bla bla bla extensively and know way more than you, peasant.” And yet they still violate the Hippocratic oath and cause millions of patients significant harm with their arrogance. My favorite part of the Wikipedia page on the oath is the italicized note at the very top of the entry: “Not to be confused with Hypocrisy.”

Also, a lot of us know a great deal more than many doctors do about our conditions. Try being a woman, you’ll see how they respond to facts and credible sources (see my poetry student Elizabeth Sensky’s amazing poem of poet “A funny fact” for more on this). But just being a sick person who also happens to be Black or old or queer or trans or you name it is enough to get laughed out of a doctor’s office in a lot of cases. Especially with psychiatric illnesses, as I’ve found. Lord have mercy, I would punch every doctor who ever said with a shrug “maybe you’re just depressed” if I had the strength to.

And sadly, experiences such as these turn a ton of people off Western medicine for good. Often sadly, but not always—changing to a better diet and focusing on your breath can bring results, and there’s much to be said for placebo effects. I certainly wish acupuncture had helped relieve some of the pain of ME, but it didn’t work for me at all.

It’s sad because stopping all medications can be just as harmful as side effects, especially when done so without tapering. Take it from bipolar lady—we’re notorious for declaring that we’re completely fine and don’t need our meds anymore, la la la we’re free! Which is extremely dangerous and can cause weird withdrawal symptoms such as the above and another known as brain zaps. Feels exactly how it sounds. I got the shirt.

And it’s fucking bullshit that there’s no FDA-approved treatment for ME, leaving us to figure it out almost entirely based on anecdotal evidence.

My lived experience with my handful of diseases and those of my loved ones has taught me that all types of treatments can be dangerous. The absence of treatment can also be dangerous (see type 1 diabetes wrecking my poor brother when he couldn’t cope with it all on top of having been misdiagnosed as type 2). But it should not be our responsibility to learn the dangers of the former the hard way. Medical practitioners have to do better. Some of them will, some of them already do, and bless all of them. Far too many of them won’t, and they will cite statistics as their excuse for utterly failing their patients.

Fuck statistics. Human beings suffer and die. People are always more important than numbers, and if you’re practicing medicine and refuse to recognize that: what the fuck do you think you’re doing? Who the fuck do you think you are?

Like so many of us, I am appalled at the brutal murder of Renee Good at the hands of an ICE goon. It should never have happened, and I wish I lived somewhere that it didn't.

But I am not shocked, and honestly my fellow Americans in all three continents (we live in the U.S., and many others live in America, so it’s better and less culturally blind and be specific instead) should not be shocked. As the great Childish Gambino said, this is America.

A lot of people are expressing shock and saying “this isn't America.” For example, Mark Ruffalo expressed his sorrow thusly at the Golden Globes last night and has had praise heaped upon him since. He said, “I love this country. This isn't America.”

However, the problem is this is very much America, which was founded on genocide, theft, rape, torture, kidnapping, and enslavement. Back when it was populated more or less solely by indigenous peoples, the three continents were teeming with independent nations and their governments, technology, international (because many nations) trade, education systems, and languages both written and spoken.

Then Columbus came and decided the people he saw were not people, so he kicked off the American tradition of the atrocities listed above. The settler-colonists also did some or all of these things to (other) immigrants, queer folk, and disabled people, to name a few.

So let’s stop pretending state violence up to and beyond state-sanctioned homicide is new. Stop conveniently forgetting our history when we see an innocent white woman getting shot in the face by Trump's jackboots. Remember the origins of this country, remember who we really are.

Either our ancestors happened to America, or America happened to our ancestors. I belong in the first category and so did Good.

Her murder is nonetheless atrocious. It's also par for the course in the USA. We must acknowledge our history, mourn our present. Only then can we work toward a better future.

*

ps If you'd like to learn more about our true history, I recommend the following:

An Indigenous People's History of the United States by Roxanne Dunbar-Ortiz

By the Fire We Carry by Rebecca Nagle. You can also subscribe to her Substack newsletter for reminders such as these.

And I hope to get back to my regularly scheduled program soon and stay on topic. We’ll just have to see.

I handed it in to my beloved advisor, the poet Fanny Howe, who died earlier this year and it broke the hearts of many poets and my entire cohort. We were lucky enough to have her teach our last workshop before we dove into thesis-assembly. Her work made the world better and more precise.

I ate a large donut with pink frosting with my second cup of coffee, at work at the New School’s writing program where I never knew what I was doing. Without realizing it, I’d been manic while pulling the poems together with my essay on Romanian poet Paul Celan’s “Conversation in the Mountains” with what I though was a clever title: “Where Death Is Alive”. What a mope I was!

And I got mopier, all the way down as I crashed from the manic high into a deep and dangerous depression, my first bipolar cycle. I couldn’t even look at my thesis until 2021, and that was because my dear friend and excellent poet Megin Jiménez, who remembered it well and told me I needed to read it again.

And then in 2022 I decided to rewrite the poetry, and I rewrite it still, here and there, every time I look at it. It holds an important place just past halfway through my unpublished collection of poems titled In the Blood. What can I say. I’m a mope for life.

Do You Know 

1.

She lay on the bed,
her head tilted 
to one side to peer at us
between narrowed eyes
failing to flutter awake.
I couldn’t see the blood 
pumping in and out 
of the vein 
in her neck. I saw
the pulsing, pulsing
almost out of the skin
worn thin with living
so long.

2.

Nothing was precious: 
not the crack 
or the missing handle
of the teacup 
nor the bulging 
muted red spine
of the barely
enduring book among stacks
of barely enduring books

She’d kept it all: 
grocery lists, rubber bands, 
sticky jars of moldy
jam and turpentine,
stale bread, notebooks, 
Styrofoam cups, stench, 
writhen gray
skeins of yarn,
dolls, stale smoke, 
five pairs of baby shoes,
knitted scarves, pocket knives,
papers and papers and papers
with crumbling edges,
oiled words sliding
into acid and falling.
We threw it all out,
painted the walls peach and 
that car I remembered
always under the carport
with the rippling tin roof
was gone and so 
were the bees 
dizzy in the forsythia.
Anger still 
in every room.

3. 

She had stopped 
telling the same story, 
the snake in the haystack
the brother forking into it
screaming like a girl
and everyone laughing.
No more forgetting and 
starting all over again 
One day my brother…
invisible whispers 
and sweet decay 
and such thin
hair took 
the story’s place.

4.

Pill popper with a
face pocked with fury
hissing at the last 
one left. The baby 
got the brunt,
the dregs 
of motherhood, of wifedom,
Joe having had
a whole other family
while gone for 12 years.

This among other slights real 
or perceived, suspicion
passing down the line
of being unwanted
ignored
alone to the last
woman who boiled
and sobbed 
look at me
when I’m talking to you:
you don’t love me
at the next baby
down the line

5.

She’d been the first
to go to college,
a family pride
became a nurse,
taking care of strangers
being her preference.

Later I’d found
her red beaded necklace
in the box that held
the note and signature
not from Joe.
An old scandal
no one knew or
could believe
even while knowing
she’d kept her secrets well.

6.

Refusal skipping 
across generations
like stones 
across a lake,
some injustice
or other swimming
beneath. Much of it
so hard to believe.
Ripples.

7.

These three women 
more or less related,
Mellie then Helen then Lynn,
the adopted thread 
knitted into some sort of family
stuffed into a two bedroom
with six others

8.

Long moments of silence 
over the phone
blurred our conversations. 
I could hear her 
breathing and then

Who is this? 
Who’s calling? 

It’s me grandma 
please don’t hang up—

Sometimes I heard her 
placing a bowl in the sink, 
pouring a glass of water, 
percolating coffee,
all of it off key.  

9.

My brother and I 
threw pebbles up into the night 
while we waited 
Don’t you remember us?
Bats swooped, falling for it
while she didn’t know us
Get out before I call the cops. 
No food, just stones.

10.

She was a mad wisp of air
arms folded against 
the rest of it.
The doctor said she 
might be crazy 
were she not so old. 
She blinked in the chair. 

11.

I touched her face 
cold and still. 
Pink cheeks and blue
eyelids and red lips. 
The first corpse
I ever touched 
wore a white dress
with red and pink flowers. 

12. 

We woke up 
after brief sleeps—
she’d finally let us in
after midnight
still unsure when
we asked—do you 
know us now?
Then we started 
the whole thing over 
again without any
acknowledgement. 

Yes grandma you told me,
burned right up
in the yellow chair
just there in that 
tumble-down house
down the street.
Having fallen asleep
lit cigarette dangling
between index and middle 
finger. The middle 
name now mine
we share Elizabeth
between us
still in flames.

13. 

Young man I’ll have 2 burgers and a coke
she said to the cardboard cutout
of Roy Rogers
her eyes having
been dilated by 
the ophthalmologist—
it adds up. 
Mom so mortified
she dragged her out 
of the bright restaurant 
without ordering
and laughed all
the way home. 

*

I am one of those lucky dogs who love their work. I had a great career and jobs I looked forward to when I was able to teach ESOL, but my current role as a poetry creative writing instructor is the one I’ve looked forward to doing the most.

Part of that is because I am also fortunate in that I work for the International Writers’ Collective in Amsterdam, teaching remote classes for about half the year. My boss is not only smart and savvy, she looks after her teachers, always putting us first.

And I love the way writing is taught at IWC, how we read a poem every week to tease out the techniques that make it work rather than focusing so much on content (as many writing workshops do). The students then write an original poem using those same techniques, with endlessly fascinating results.

What started five years ago as a side gig is my only job now that ME (Myalgic Encephalomyelitis—go ahead, say that ten times fast, it’s easy) has invaded my nervous and immune systems and left me housebound, even bedbound at times. I can’t work more than half the year, and struggle with that much, even though it’s only three or four hours per week.

I love the work, every aspect of it, even though the prep has become so exhausting. Not so much the technical analysis of each weekly poem because I’m well trained and experienced on that now and have written several of the exercises I teach.

It’s the most essential part of creative writing class prep that gets really draining: critiquing. Every week, my poetry students are to submit a draft of a poem for peer and instructor critiques, and we all have to work pretty fast to turn those critiques around. They write critiques for a minimum of two fellow poets, and I of course write critiques for all of them. It’s also the most fun I have other than class itself: writers should encourage and champion beginning writers. Read each others’ work attentively to point out what amazing thing happened and where the form is there but the words aren’t yet, and so forth. The giving circle of writing, if you will.

This term I have the honor and good fortune of teaching a full (wait-listed, even!) class of ten poets at the middle level we offer at IWC. They are all wonderful women with astonishing technical skills who write gorgeous poems that make me think and feel. I absolutely love critiquing their work even though it’s more challenging than with the beginning level. Or because of that?

But as my disease progresses, it gets harder to execute these creative and intellectual challenges. Especially so when bad timing strikes, as it so often does, and I wind up crashing (ME patient speak for flaring) hard for a week after getting my COVID booster. Those shots always set me back, and this time around it set me way back and I got way behind on keeping up my end of the bargain.

But these ten women have been amazing about it all, so compassionate and patient with my tardiness. We have wound up having great discussions as a result, and one student prompted one about global burnout with all the work we’re expected to do instead of living, with all the bullshit happening whether or not we, in our part of the world, voted for it. And how everyone explodes from time to time, breaks down, corrodes until collapse. And that it’s so important to keep that in your mind when someone fails in front of you, when you are a witness to their explosions and falls.

Teaching is my Purpose, I’ve decided (so is writing, but that doesn’t pay the bills quite as efficiently). The ultimate goal of every teacher should be the student needing them no longer, the student knowing what to do next and where to go and saying goodbye.

But how I wish the same class would always stick together because I love them all. I’m so glad they don’t because then the new class is also awesome and we all get to learn each other and poetry together. So I just keep going, loving my job every time I do it.

At The Pharmacy
Brooklyn, 2005

Greenpoint was always covered in snow
or felt like it
living there in a sublet 

a beautiful man in a tiny kitchen
making pasta and artificial meat

they heard from the neighbors
a man fell into
the third rail at Nassau Avenue

they smoked cigarettes on the fire escape
she talked to herself while she made sandwiches
standing on the dark hardwood floors
he could hear her but not interpret

and time became this vast empty plane 
that looks the same wherever you stand
an empire of same

one day there was a fire next door
wake up beautiful man
get your coat and our gorgeous cat

the room slices into
white smoke above
they are coughing

and he’s holding Pants in his arms
she who is never silent but she’s silent

outside in the blizzard
watching the flames
lick the windows from inside
the top floor of the other building
having climbed up all the stairs 

from bookstore to dwelling 
after dwelling and crossing
to the top floor of their building

they might be watching 
his apartment burn down
to the second floor 
to his home
so she calls him in Spain
and he doesn’t know what to say

and the Duane Read manager
brings socks for the family in flip flops
invites the residents to his store
where it’s warm and there’s cat food and Pepsi

she folds over the cat
who is no longer silent
makes it dark and as quiet
as possible for her
until the end

and only smoke stink and stains
where books weren’t on the shelves
clean under where they were

days of scrubbing 
wiping and mopping
windows open in winter

they wouldn’t last long
it would end badly
she would flee and be 
the person who lives without him