I Am Not Okay

Not just a song by Jelly Roll

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I am not okay
I'm barely getting by
I'm losing track of days
And losing sleep at night
I am not okay
I'm hanging on the rails
So if I say I'm fine
Just know I learned to hide it well

I know, I can't be the only one
Who's holding on for dear life
But God knows, I know
When it's all said and done
I'm not okay
But it's all gonna be alright
It's not okay
But we're all gonna be alright

Sometimes, when I’m driving around, I don’t have the mental bandwidth to listen to books or podcasts but don’t want to be alone with my thoughts.

So I turn on the radio.

A song that keeps coming on lately that catches my ear, even though I don’t even particularly like it, is “I Am Not Okay” by a guy who, for some reason I’ll never understand, goes by the stage name of “Jelly Roll.”

The only part of the song that rings false is the line that says, “It’s all gonna be alright.”

If we’re being honest, that line is the “So if I say I’m fine, just know I learned to hide it well” part.

I keep intending to sit down and write about things that have nothing to do with me. Things that an actual audience — something I would very much like to grow — would be interested in.

I know it’s not helping. I am watching my subscribers drop.

I’m sorry.

But I keep winding up right back at the place where I’m drowning in the pain and can’t help writing about the wounds.

Only you can’t really ever truly write about them in a public way. Can’t fully explain your shame, your self-doubt, your self-loathing. Can’t talk openly about the delicate interplay with people who can’t find a way to love you anymore because you’re too difficult to live with.

Taboos and circumspection.

I want to write about the things I see happening in the world that are interesting or important. I have thoughts, opinions, analyses.

But despite my best intentions, my focus keeps being dragged back to daily reminders of the way my life has come unglued, how my neurodivergence is getting worse and making it nearly impossible for me to find work, my bills aren’t getting paid and things are getting really hairy on the financial front, and my relationships are breaking down because of the emotional volatility that comes from all of it.

I did the Catholic thing and had a big family without having the chance to come to terms with the sad reality: I lack the internal resources to take sufficient care of myself, let alone this many people.

I played by the rules, but the rules weren’t made for people like me.

When it comes to work, I need to feel “safe,” for lack of a better word, to do the kind of thinking that produces good results, and even then, that work exhausts me. But I rarely feel “safe.” Under constant pressure, assailed with frequent interruptions and demands, heartbroken over a failing relationship, and perpetually aware that nothing in my life is going the way I’d like it to, I feel distracted, strung out, depressed, and over-stressed.

I am ashamed of myself for my limitations, and the way they keep me from fulfilling my duties. The emotional and physical distance between myself and my bride has become an unbridgeable chasm, and I see the way my insufficiencies are hurting her and depriving her of what she needs. I’m so caught up in the lament of my disintegrating marriage and work life that my kids, who more or less seem fine most of the time, are getting precious little attention or guidance.

How can I lead them when I can’t even lead myself?

So I ruminate, self-medicate, rob Peter to pay Paul, try every day to get up and do better, go to bed every night realizing I’ve utterly failed to change anything that matters.

I work a lot, often 12 or more hours a day, but have little to show for it. Can’t explain to normies why I work harder at things that pay less because they’re things I can stomach, or why I can’t just suck it up and do whatever it takes, because my autistic brain will not submit to my will. It’s not just laziness or lack of discipline, but it sure as fuck looks like that. Which only deepens the feeling of shame.

The emotions come in forceful waves, the feelings of worthlessness, of loneliness, of self-recrimination. Then the despair sets in, stripping me of agency and momentum.

How did I fake it when I was younger? I wonder. Oh yeah, that’s right, you’re “high functioning,” which means you pretend better than most but were absolutely miserable and it made you unbearable to be around.

The endless anxiety. The feeling of never fitting in. The boredom and dislike so strong it creates a feeling of physical nausea and revulsion.

I read something today that said as many as 80% of autistic adults are unemployed. I started reading articles and forums on this topic, and saw my own story repeat over and over in other people’s words: can’t get a job. Can’t keep a job. Can’t stand any job. Have to pay bills but needing to go into work even one more time feels like a fate worse than death.

It’s weird, because I’m a workaholic if you get me on a project I like. You can’t pull me away. I’m not averse to hard work, I’m averse to working hard on stuff that doesn’t matter to me.

Every job I ever had was an ordeal to get, because I can’t bullshit. I despise the interview process. Can’t pretend I want to be there, or give them an answer they want to hear about where I see myself in five years.

“Not here, that’s for damn certain,” is not an acceptable reply.

But those jobs were even harder to keep. Every time, I hit my cap somewhere between 6 months to 1 year. That was the point at which I stopped being the rock star who was blowing everyone away because of how fast I was learning the job, and started finding everything so tedious (because I’d already learned the job) and pointless (because it wasn’t ever a job I wanted in the first place and the work wasn’t meaningful) that I began burning out.

I have had over 20 jobs in my life, but never held one for more than 3 years, except for when I worked for myself. I managed to get 7 whole years out of that one, and I actually loved it for most of that time. But when that round of burnout finally came, it was even more catastrophic than any I’d previously experienced.

“You’re so damn smart. You seem so normal. Have a conversation with you, and it’s so hard to remember you have issues that keep you from functioning.” My wife has said some variation of this more times than I can count.

But it’s true. There’s a part of my brain that works very, very well. The part that conjures up essays. The part that talks about interesting things I’ve read. The part that waxes philosophical over drinks with friends for hours.

The rest of it does not. I freeze. I can’t decide things. I can’t overcome obstacles. I forget what I’m doing. I get distracted. I feel repulsed like I’m trying to hold the wrong poles of two magnets together.

Night before last, it happened to me at dinner. We were out of town for my wife’s business trip, and I was there to take care of our youngest while she had meetings all day. When it came time to finally eat at nearly 9PM, I felt my brain go into some kind of gear lock. I couldn’t decide what to eat, where to go, what to do next. We’d just spent hours at a large, loud, chaotic meetup at a brewery, and I was well past sensory overload. I was tired from sleeping on a bad mattress, hungry from not eating for most of the day, but my mind just stopped processing and bluescreened instead.

I knew Jamie wanted me to decide, but I was stuck.

“I can’t. I need you to just tell me where to go.”

Do you know how lame that feels? I’m supposed to be the man in this relationship, and no matter how many times I read about the problems people with brains like mine have with executive function, it never becomes easier to accept. I’m self-aware. I just want to be a normal dude. I want to “snap out of it” and just “figure it out.”

But it doesn’t work.

If you’re unfamiliar with the phrase “executive function,” that’s ok. You know what it is in practical terms:

In practice, executive function is a slippery concept. Sometimes it looks like responsibility. Sometimes it looks like self-discipline. Sometimes it looks like being a competent adult.

If you have poor EF, people might mistake you for being disorganized, lazy, incompetent, sloppy, or just plain not very bright. Why? Because executive function encompasses so many essential areas of daily living. Nearly everything we do calls on areas of executive function. Cooking. Cleaning. Parenting. Work. School. Self-care.

Impaired executive function is why I occasionally leave the burner on the stove lit after I finish cooking.

It’s why I have no clue why I’ve walked into the kitchen.

It’s why I have so much trouble taking a break from work to walk the dog.

It’s why the recycling items sit next to the front door for days before I take them out to the bin.

It’s why I write myself a list of the errands I need to run if there is more than one.

It’s why I can’t fill out a form while answering the questions that the postal clerk is asking me.

It’s why the kitchen looks like a typhoon has hit when I’m done cooking.

It’s why I insist on doing things my way even when someone shows me an easier way.

It’s why I find myself staring at a conversation partner with no idea what they’ve just said.

How is it possible that one thing encompasses so many different situations? Executive function is the control center for our brain. The conductor of our neurological orchestra. The pilot of our brain plane. The CEO of our synapses. The . . . okay, I’ll stop.

Every single thing in that list is something I struggle with. I can’t play chess. I can’t see moves ahead. I can’t plan, because the future doesn’t really exist for me in comprehensible terms. Every day is just about getting through that day.

If I sit down to write, I can lose myself for hours in the work, as long as I’m left alone. But if I have to do a series of tasks I’m not enthused about? I will procrastinate until the day is gone, then berate myself for doing it. I have to try to pressure myself with Pomodoro timers and to-do lists, but I usually mess those up too.

I have always had a great memory for academic detail, but as I’ve gotten older, I find that I forget so many pragmatic things that get lost in the torrent of thoughts. Even important things. Things I tell myself I must not forget.

If I go to the store without a list, even for five things, I will almost certainly forget one of them.

But I digress.

The point is, I’m caught in a spiral and trying desperately to find a way to break free. I know that things are unsustainable and can’t go on as they are, but I also can’t seem to find a way to fix…any of it.

It’s utterly demoralizing. I keep trying to make myself believe I can just pull myself up by my bootstraps and figure this out. But every time I try, it just falls apart.

Is what I am today all I will ever be capable of?

Are all my successes, meager as they’ve been, buried forever in my past?

From childhood to marriage, everyone who has ever loved me has told me I am too much. Too demanding, too overwhelming, too emotionally needy, too temperamental.

I am told that I feel love but do not know how to make others feel loved.

Is it my fate to be alone?

To scratch out some meager subsistence in between bouts of self-loathing, anxiety, and perceived futility?

Will the lives of those I care most about be better when I’m gone?

From where I sit today, it certainly seems that way.

If there’s a tomorrow where things look different, I hope it will come soon.