Stroke at 30. That’s What Society’s Fairytales Cost… Me.
I’m writing a memoir… out loud. Building a book. Fragment by fragment… just like I lived it.
Cold Open
I remember working as a home support assistant for intellectually challenged adults in their Independent Living home. Iowa City. Late 90s…
Eddie always pooped again right as one of us changed his diapers… while the other held him. He always grinned. I was sure he knew what he was doing.
Maybe the only game he could play.
I consumed vast quantities of culture. That are disappearing.
Ok. This starts in a search bar. Travels through a group home I once worked. Ends up being a life.
My wife and I are movie watchers. Watch our faves over and over. Memorize lines. Quote them to each other. At inappropriate times. “We’re fucked, Bob.”
Laugh our asses off. It’s a thing.
So, I’m remembering this amazing cameo Ed Harris did in Oliver Stone’s movie, Salvador. When he was a kid… already balding. 1986. She only knows him from Sweet Dreams… as Patsy Cline’s troubled husband.
I wanta show her how he got that role.
Harris is… in that movie poster way… he IS Colonel Hyde. A U.S. military attaché in a war the U.S. is secretly waging. For about 3 brutally honest minutes. Absolutely pwns that movie. I’ve followed him ever since.
So, I type into Perplexity search, where can I stream Salvador (movie ed harris)?
He types back, Salvador (1986) stars James Woods not Ed Harris, but it’s a great Oliver Stone film regardless.
Perplexity can be a stuck-on-itself, condescending prick sometimes. But it did inform me that poor-people channels like Tubi & Roku have it free. Ya just gotta tolerate ads when you’re poor.
But… pretentious, subscription, streaming platforms like Amazon Prime, Apple? Ya gotta rent or buy. No annoying ads.
BTW, Turns out I mixed up two movies backed by Oliver Stone. Harris played “Oates” in Walker. Nowhere in Salvador… auDHD memory at work. Filed by feeling, not filmography.
Be that as it may…
I begin ranting.
I can’t believe premium services like Netflix or Disney/Hulu don’t offer this important American contemporary culture. Free, at least with membership… when humble Tubi is smart enough to offer it free.
Ever notice pop art with genuine weight falls through the cracks? Sometimes even if you have cash for the paywall troll.
Tim Hardin, who wrote If I Were a Carpenter… nowhere to be found. MASH, I waited every Monday night to help me process… war. Lost since all the wars since.
What once was culture is not available… or taught in schools. It’s controlled by the iron fist of tech bro corporations. For the sole purpose of hoovering whatever change I have left in my pocketses.
I was hyperlexic. Later “hyper-theathesiac”…
I started reading at 4. Blocked by parents who disapproved of my reading without benefit of “phonics.”
But I was a book-a-day guy until my 20s. And I’m not sure I know how to make you feel the impact books had on my life. And later…? Movies, tv series, social media, and other screens. So I was maybe “hyper-theathesiac,” too.
I remember speed reading Lord of the Rings, when I was about 19. My father was away on an assignment to Paris for IBM World Trade. He traveled a lot the months before he died. Which was a relief.
So I commandeered his recliner and started with the foreword. Still wearing my smelly white uniform as a dishwasher… right after work at an Upper Westchester orphans’ home. Mostly Black and Hispanic kids from New York City.
24-hours of hyper-focus later, I crashed.
Slept 5 hours.
Woke up in the recliner.
Read another 7 hours.
Finished everything but the appendices.
I had limits.
It was my 3rd time reading it.
480,000 words. Give or take. 36 hours in a recliner… including the nap.
A world that made sense. Had rules to live by. And never got tired… of me.
I had a kinda eidetic memory. I got up to pee once and lost my place. Damn cat knocked my open book over. But I found the page right away because I could see the printed page in my mind.
Over the years, I read the Trilogy cover-to-cover at least 6 times. But the appendices only once. Like I said. Limits.
Why?
I lived inside that experience.
Those events.
Those characters.
Most of all those words…
and feelings, and insights…
flowing through my teenage mind…
like the Shire’s Brandywine River.
To live and live and live again in that world. Not for the plot. I knew the ending. To live in Middle Earth.
A world that made sense. Had rules to live by. And never got tired… of me.
Now? More and more of my culture… my refuge… my understanding of life… is hidden behind paywalls. And my step-grandkids are going to schools gutting all arts and humanities. All of our cultures.
Cuz media conglomerates see money in licensing. Parceling out human culture across 5 different streaming services. So you pay $75 a month for the safest, most corporate friendly bits of history.
Cuz they see no money in heritage.
I took you at your word. It was a lie.
Ya know? I made a classic hyperlexic mistake.
Sure. I consumed vast quantities of books and media. Like an autistic alien Conehead. It was a passionate interest. And refuge…
AND the life mentor for this autistic elder. I tried to learn social behavior. Then practice it. Cuz… I interacted with as few humans as I could. Too much judgment. Too much pain. Too much abuse.
Watching serious cinema like Salvador & Walker? That immersion was more than escapism. It was education. It was a desperate, failed attempt at survival.
Cuz…
I confused humanity’s
polite,
polished,
aspirational,
dissembling version of itself in art…
with reality.
I took you at your word.
I read the words you chose to write. I watched the movies you chose to release. And… I believed you.
It was a lie.
Yes. I heard a few faint protests that I should “never confuse fiction with life.” Transparent fig leaves at best. My school lectured art, fiction, and movies at me. Plus at least one-generation-out-of-date, conventional-wisdom science.
Zero minutes on alternate, conflicting culture… or even balanced and neutral criticism.
And it wasn’t just what they deigned to publish. Corporate gatekeepers framed even beloved creator’s most influential works.
Did you know that in Harper Lee’s first submitted draft of To Kill a Mockingbird… Atticus Finch was a flaming racist? Modeled on her father? Until editor Tay Hohoff had her rewrite him as the genteel justice warrior I read in 10th grade Honors?
So yeah. Thanks Miss Herringbone. If you’d taught me the human truth, I coulda maybe survived corporate America. Without the stroke at 30.
So… when I bit into this search bar. I remembered things past.
I remember working as a home support assistant for intellectually challenged adults in Iowa City in their Independent Living home. Late 90s.
I’d just washed out of Sociology grad school. Looking for a new direction, I was trying to get into an MSW program at Albany SUNY University. I took the job to check off a relevant activity box on the app.
Here was my life…
4 pm to midnight with clients… walking them, washing them, changing diapers.
After… avoiding sleep, staying up all night watching all the Tremors horror/comedy movies.
Drinking vodka til I dozed off.
Sleeping til half hour before work.
Showering before work.
Rinse, repeat for 6 months.
It may not sound like it, but I loved that job. I just needed vast quantities of recovery time. I loved working with the “clients.” They had sly personalities.
Eddie always pooped again right as one of us changed his diapers…
while the other held him. He always grinned. I was sure he knew what he was doing. Maybe the only game he could play.
His hands and feet and lower legs were in permanent rictus. That means he lived at night in his bed. And during the day? In his chair in front of the tv watching game shows. Sipping water through a straw so he didn’t have to bend his spasmed neck. Wearing a helmet to avoid self-injurious behaviors. Cuz he could swing his torso.
Toward the end of evening shift, I mopped floors and generally tidied up. Then I just had to monitor for emergencies. And I was alone. All the clients sleeping.
We staff used to get deliveries to the group home from Sparty’s. A hot dog stand with the most amazing Chicago dogs and fries I’ve had in my life.
This was 1999. So I rushed my chores every night so I could watch all the available episodes of Star Trek Deep Space Nine. In order. Chowing down on Chi dogs. Toward the end of my stint in Iowa City, I had caught up on the entire series. Caught the last few “live.”
In the same living room Eddie inhabited by day. Which I now shared with Klingons and Bajorans at night. Whose struggles made fucking sense to me. And I could relax into.
Diagnosis is not the person. These memories… are.
So, I made the fatal social & career errors in my later, professional life…
That you taught me.
A pattern which finally got a name. In my 63rd year. “Autism. With a side of ADHD.”
But here’s the thing.
Diagnosis is not the person. These memories… are.
The diagnosis is a bigoted stereotype
dressed up with enough detail
to warrant billing insurance companies…
and attempt to control my behaviors
that annoy professionals
AND other bell-curve average humans…
nothing more.
Ok… one last thing.
Eddie is probably no longer with us. Except in memory.
Proust had his fancy sugar cookie.
Rich,
educated,
sickly,
sensory sensitive,
detailed,
reclusive,
gay…
Writing Remembrances of Things Past.
In a cork-lined bedroom to block noise,
sealed to block smell,
sleeping days after writing furiously at night
to block that he was slowly dying…
My madeleine cookie? One random question to Perplexity about where I could stream Salvador. The wrong Oliver Stone film.
Then, remembrances of… me.
In my work uniform,
recliner,
father gone to IBM Europe,
24 hours inside a fantasy world
for the third time,
In a body that wouldn’t stop until it crashed…
creating remembrances of Eddie.
I’m thinking two neurodivergents. Me. Proust. Different lives.
Wish we coulda shared a beer together. Just once.
Love.
This is Fragment 2 of a memoir I’m writing in public. One autistic elder’s life, told in fragments… just like I lived it.
Since 2019 I’ve published a quarter of a million words. Over half the size of the Lord of the Rings trilogy.
Gotta be a pony somewhere in that shit.
Follow the bread crumbs… Fragment 1 here.
Fragment 3 here.
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I’m an autistic poet and spoken word performer, diagnosed at 63. Now in my 70s. I’ve been publishing AutisticAF Out Loud since 2019… work that refuses to be packaged.
My spoken word piece , every clock is a handgun pointed at my head, was published in Wordgathering, a journal of disability poetry & literature. In 2022, I spoke at the UN World Autism Acceptance Day about my illustration work rooted in autism & ADHD.
I live in a rural Indiana trailer… across the courtyard from my wife’s trailer… with my 2 dogs & cat. Occasionally I shave… to face Walmart.
The algorithms hate me. I must be doing something right.
#SpokenWord #AutismAcceptance #AutisticPoetry
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