johnpalmer

Some days, I hate everything about an aspect of myself. Sometimes, that “aspect” is “John Palmer” so I hate everything about myself. I don’t know why this is, but I assume it has nothing directly to do with psychology. That is: I don’t think it’s my background of constant abuse, in every relationship, because I didn’t know what a non-abusive relationship looks like. I don’t think it’s my use of marijuana or alcohol. I don’t think it’s depression, because this is more likely to happen when I’m not specifically depressed.

What I think it is, is pain, neurological pain, that infects my thought processes, and makes everything feel, and look, terrible, so, if I get self-conscious, I start to hate everything I know about myself. Did I mention the example of hating how nice I felt to give a cookie to a child? Yeah, like that. Now, here, here, my abused background comes into play. The nastiness, the insults, the tone of my internal voice, criticizing me, the hate, the bigotry, that all comes from my abused background – all you abusers, *YOU WIN* and I feel like I'm stuffed with the specific shit you fed me!!! But it’s not y’all feeding me shit that won.

See, those abusers don’t have the power over me that they might have over another person. I know they are inveterate, hateful, bullshitters, who’d say I eat paste, if they thought that would make me feel bad. Since they’ll say anything to hurt me, all they’re really saying is “HURT! HURT! HURT!” and, unfortunately, sometimes I do hurt, but I never show it, in case they’re watching. I won’t give them a victory. Of course, that means I won’t show my friends I hurt, so they can give me extra hugs, and whisper comforts to me, that I’ll blush, and say I don’t need, but that I might cherish forever.

I’m going to spend today, writhing in pain, but, I can share this tidbit about what it’s like to live with excruciating neuro pain.

Janet Miles – I also think *you* have neuro pain, because you (and I) both have feelings that maybe it would be better if we were dead, and, I know that my feelings of death-yearning are almost entirely due to neurological pain. (The rest are due to how, everyone will treat me like a child for the rest of my life. Even my own effing attorney treated me like a child. That hurts, because my dealings with my attorney were the last times in my life when I felt like I could be A MAN.)

So imagine a memory is accompanied by an emotional maelstrom, where everything in your brain is of nightmarish quality, and the entire experience related by the memory now feels awful and horrible. If you've ever had a panic attack (or thought perhaps you had one), that's kind of what I am talking about, only, directly linked to a memory. Well, that can happen to me, and it's usually a bad memory. The thing is, it doesn't have to be. Let's pretend I have a memory of doing something nice for a child; a good example would be, I looked at mom, who nodded, and gave the child my last cookie, and saw that totally delighted look that only children display fully, especially from a minor treat like a cookie.

Well, if I have a bad pain flare, I can feel horrible, just horrible, that I enjoyed that memory so much, that I cherished it, that I was oh, so, effing proud of myself for giving up a cookie. It can be so bad, I don't want to see the child, or the mom, ever again. If I'm low on resources (which I've been for the past 2-3 years), I might panic to be near the child or the mom, because of the trauma (the neurological pain, and attendent emotional maelstrom) that accompanied me dwelling on the memory.

This has nothing to do with one's normal picture of mental health. I'm not so mentally fragile that even giving a child a cookie can become traumatic. What I am, is beset by so much neurological pain that any action, but especially any meaningful, memorable, action, can become a nightmare.

Now, two sentences to make this a bigger nightmare for the empathic: it's only reasonably possible to survive this, if you know it's your pain lying to you, and that this is not your brain's fragility and inability to cope, okay, so if you don't understand that you're in pain, and that the pain tells you lies, it's easy as eff to die as a result of all this. And I only realized I was in pain, at all, after my pain had been worsening horribly for over a dozen years… not even four years ago, today, was the day I learned that this was all pain, much less that the pain was causing my brain to lie to me.

Good luck out there.

So, I have a hypothesis about how Cognitive Behavioral Therapy (CBT) works. Ordinary people, who are facing depression, have their perceptions turned toward despair, or, sometimes all the way there. You want to do something difficult, and you start to expect failure, or maybe even become certain of failure.

Well, first, you challenge the BS your depression is feeding you. You think you’re likely to fail; okay, why? You force yourself to acknowledge it’s just a feeling. It’s real, but not reality. So you push yourself, as if you expect success. This step is important, because, when you say “I don’t think I’ll succeed,” well, that’s your most trusted voice saying that, right? In the end, you listen to your own internal voice over anyone else – though sometimes your internal voice must admit it’s wrong :-). That’s why you need to challenge that voice… it’s feeding you depression-BS, not reality.

( a bit more than a page single spaced in Word... )
Hah. “We,” I say, as if thousands will read this. Still: if you happen to have come across this page, yes, neurological pain can mimic a lot of symptoms. It can also ruin your sleep, which can add a lot of other symptoms, including (hypo)mania. So if you’re in neurological pain, you may be finding a big part of your answers. I hope so – I felt awfully lonely, when I had to live, without knowing that it really was pain all along.

Have you ever thought about it, what it's like, when you can't speak up for yourself? When you simply can't form the words you need, so you look like a ball of rage?

Can you imagine the picadores who, if they find your weak spot, will go all "why are you hitting yourself John? Why are you hitting yourself?" only, verbally, knowing I can't counter them, even though I should be able to?

Can you imagine being vulnerable, in public? Like, at all? Especially if you have an abusive past, where it's reasonable and natural to think someone wants to hurt you?

Can you imagine when people mistake your difficulty speaking (and attendant frustration) for anger, or abusive behavior?

Can you imagine just deciding it's better to be wrong, always, than to try to explain, after trying to explain caused you enough pain for a lifetime?

It's like, I'm a Vulcan who can't engage in touch-telepathy, you see? Everyone knows that "everyone can talk." And no one thinks that talking malfunctions, much less thinks that brains malfunction. So the one thing that everyone expects to be perfect, will always be marred for me. Even if my touch is almost telepathic, and more than sufficiently empathic.

I had this interesting, sweet thought that, back in college, when I traded backrubs for companionship and semi-intimate talk and touch (nothing sexual - I was a perfect gentleman). If I had wanted to, I probably could have traded backrubs for very careful introductions to "dating for the man who is terrified, because his neurology is sure to betray him." I might even have gotten laid. It's probably for the best that I didn't, though. Probably would have been best if I stopped trying for sex with all girlfriends I met through 2003. But who knows that their neurology is going to deny them a normal sexual experience, one that would be best left unshared? Certainly not me - I was demanding some form of normalcy in my life, and I didn't get it, which sucks, but, my experience is vastly outside the normal range... don't think you're going to have my problems, unless you have severe, pelvic-and-below region, neurological pain. In that case, I do know some excellent monasteries, firewatch outposts, the perfect temperature for cold showers....

It's not that hopeless, but, while the neuro pain is there, my experience says that it can interfere with pleasure. That is not something doctors expect - even if Mr. Happy is droopy and sad looking, the right kind of stimulus should make him very happy indeed, even if he doesn't shed flaccidity. So neuro pain might put you in the realm where you need to figure out your own sex issues, with less help from experts than most people get. Don't give up hope - but if you have a dry spell, try to stop asking for help, before your partner hates you for asking. (Yes, kids, this is all in the realm of "ask your parents.")

If I can be with you, where words don't matter, then maybe you'll get to know me, and love me, but until then, I'm a bit like a blind person, stumbling, looking for the stones that are the correct color to present to my friend, or my beloved, and then, remembering which stone type is which, for fear of offense for offering the wrong color stone, or one that has become less shiny, though it still feels well polished.

I feel as if I found my theme song, along with a movie reference, so, maybe that means it’s time for another post about me. The song is “Creep” by Radiohead, and the chorus tends to go kinda like this:
You float like a feather
In a beautiful world
I wish I was special
You're so fuckin' special

But I'm a creep
I'm a weirdo
What the hell am I doin' here?
I don't belong here

I say the chorus “kinda” goes like that, because “But I’m a creep...” is the actual first line of the chorus, yet the lines starting with “Float like a feather…” are repeated, multiple times through the song, just prior to the official chorus.

The movie is “Radio,” a 2003 movie starring Cuba Gooding Jr. in the title role, as James Robert “Radio” Kennedy, an intellectually disabled man who is befriended by the local high school football coach. At one point, the coach defends Radio’s presence at the high school, saying they’re teaching him some stuff, but that’s not the point. He’s teaching them too – the way he treats everyone, all the time, is the way people wished they’d treat each other, even some of the time. And that’s something I don’t need a whole lot of instruction on, though I might need to remind myself of a few lessons from time to time… and I can still suck at being able to evoke that love, due to my pain and exhaustion.

Radio, as portrrayed by Gooding, showed uncomplicated, unafraid, love for people, not unlike the love shown by a well loved, happy, child, where, if you join in a play activity, you’re their best friend in the world, at least in the moment. We have that capacity, as children, but, as time goes on, and life gets harder, harsher, and more complicated, we might guard ourselves far more closely, and even lose the ability to get lost in love. Radio didn’t lose that capacity; that was why his friendship was so valuable, to so many people.

When I have an established relationship with someone, I can feel love like that. This is part of what I mean, when I discuss how intentionality is a big piece of my life; I don’t merely work through the motions of loving, I open my heart, and think of that love we know from childhood. And to close the loop, I’m now wondering if my own neurology is partway to blame (for good or ill) for me having that capacity. You see, my neurological pain causes me to have aphasia from time to time. When I double checked my definitions online, I saw that some uses of “aphasia” and “dysphasia” are synonyms, but, I choose “aphasia” specifically. The prefix a-, in aphasia, means “without,” and, I find myself unable to find the word or words that I need to use to express my thoughts. I sometimes can only find babytalkwords, like “me must hang up, can’t talk.” With friends, I can almost always find “I am Groot” as a handy way to say me no talky so good like everyone, right now (as Groot was introduced in “Guardians of the Galaxy”)

I can’t prove this with any rigor, but, because people who can talk don’t expect to find words eluding them. When I have my aphasia in mild form, I start to babble, trying to rope in my thoughts, using the wrong words. Instead of fumbling physically, because I have to use my left hand for something (I’m right-handed), I’m babbling, because I keep realizing I haven’t finished my thought, so I’m fumbling to finish it.

If a person is able to act without “talking thought,” they can do pretty amazing things. For example, if you’re a good driver, who always maintains situational awareness, you can avoid collisions in ways that seem magical, all without thinking in words (other than the necessary “holy crap,” etc.). You don’t think to check your mirrors; your eyes kinda flicker once in a while, to look for sudden motion in your mirrors, and those flicks happen as often as they need to, given prevailing traffic. If you’re like me, you might notice you feel angry, and then check your blindspot, and sure enough, someone is riding in it, so you change speed to get ride of the idiot… I’d noticed them move in, and hadn’t noticed them move back out, and that ticked me off, all without ever thinking “damned idiot in my blindspot.”

If you can love, without talking thought, without fear, without thinking about “but what if this seems like a bad idea, tomorrow, to have been this loving right now?” if you can do all that, you can love like me, and, I think, in a manner similar to the love Radio showed that caused other people to feel so loved by him. Do my aphasia, and cognition-destroying neurological pain, help me remember that simple, delighted, “OMG it’s my best friend who I never met before!” love-in-the-moment? But those very issues, my inability to talk, and my cognitive failures, are what make it so dangerous for me to live, and love.

So, you see, you all float like a feather, in a beautiful world. You’re so fucking special; I wish I was special. But I’m a creep; I’m a weirdo; what the hell am I doing here? I don’t belong here, and people will hurt me. And the aphasia, and other cognitive failures, they’re a huge, huge, part of why I’m a creep. I really am neurodivergent, and, as with folks on the autism spectrum, it wouldn’t be so jarring, and so troublesome, if everyone was like me. But I’m not sure who is like me, much less who knows it. I’m the best proven troubleshooter I know, and I’ve met some good ones, and it’s taken me decades to piece this together, so I’m sure there are plenty of people like me who have no effing idea what’s killing them. Until I can start figuring out how to live in a world that’s crazy for me, while giving people the tools they need to help me with the crazy, I’ll always be a creep.

Discussing fascism often means looking it up, and it's a complicated topic. I tried to distill what I've been able to glean into plain English.

So, what is “fascism?” If you search the web for a definition, you’ll see some difficult terms, and it might be hard to understand what, precisely, fascism is. Me, I can’t put that together, but, as a troubleshooter with an engineer’s impetus for understanding, I’ve tried to force myself into a defintion that seems to tick the right boxes. The one that I don’t try to tick is external affairs. Is Trump more fascist, or just the same, for saying “Canada only makes sense as a state?” I don’t know. Let’s ignore that, okay? Fascism often involves aggression – but we don’t really care about that, from the inside, where we ask “is our society fascist? If not, how far, or near, is it?”

The first essential component to fascism is nationalism; fascists believe that the true blooded people of their nation are special; they may have “mudblood” rules (ref: Harry Potter). Typically, nationalists will believe that their military is more valuable than other people – better to bomb a bunch of civilians, than risk one of the nationalist’s own! You can expect fascists to be horrible in warfare, due to this twisted belief system. Nationalists believe they are deserving of other special things, too, but what that is, will likely be determined by the economy. They certainly feel deserving of adulation, as part of a favored class, among citizens of lesser nations!

In a fascist society, you’ll see stratification. What’s that? Well… in the Old South, a man knew his place (or he’d better be able to survive a duel!), and every white was better than any Black person. That’s extreme stratification; in Nazi Germany, Nazi officials were above the law, and the little people could be crushed by it… sometimes literally, if you were Jewish, Romani, gay, etc..

Religion will often be used by fascists, often with a demand for a return to traditional values. In many cases, religion will enforce societal stratification; in the Old South, it was considered Inerrantly, Biblically, Truth, that Black people were put on this earth to serve white people, and this is one of the reasons it’s been so hard to stomp out racism in America. (Yes, I know, lying soi disant “conservatives” will now say I hate America, but they lie about everything, so why do I care?)

Note that fascists tend to consider religious believers to be suckers, even though a few true believers might rise up in the ranks. It’s just, if you speak about religion a lot, it fools people into thinking religion is important to you. Since people tend to trust the religious, et viola, as I might say, trying to say et voila.

Fascism includes militarism, because of course the biggest, best, fasci-est nation in the world needs a super-poweful military, and, this urging to return to traditional values means they also need police mean and nasty enough to “get the job done,” by breaking skulls, usually of undesirables, e.g., Black people, hippies, migrants, or any other disfavored group. Remember, stratification is part of the system, so there’s always disfavored groups. So, during the civil rights battles, some people were pretty fasci in America, right? They wanted cops to hurt people marching for civil rights – and I’m not kidding, there were people who actively wanted injuries, against peaceful marchers, hence, “fasci.” ObBeetleJuice, “Th-these are not my rules, see… in fact, I don’t have any rules.” I don’t make the rules, but you want the cops to crack skulls, you’re fasci. You want them to make arrests? That’s fine, if there’s a need to make an arrest, to protect peace (but not necessarily quiet).

All of this is some pretty nasty crap, but it’s not yet fascist. First, fascism is a capitalist ideology. Now, someone in the back is saying “but the Nazis used the word ‘socialist’ in their name!” Listen, just cause the cat had kittens in the oven doesn’t make them biscuits, even if you name ‘em after biscuits. Nazis were capitalistic. As a capitalist ideology, fascism sees regulations as flexible; it might be bad for undesirables if the government allows pig farmers to build massive pig farms upwind of said undesirables, but, to a fascist, people who are weak enough that they can’t prevent massive pig farms probably deserve to have massive pig farms built near them, even if some health regulations need to be “relaxed.” A “light regulatory touch” means they can ‘accidentally’ spray you with pig shit every so often, but they can’t laugh while doing so, because, if they laugh, no one believes it was still an accident, you see.

Fascism has regimentation in the economy, where you have to run your business the right way, or suffer. Journalism is a special target; to a fascist, if no one is reporting on cracked skulls, no one cares, so, shut down the reporting. But there can be other targets, and a recent example in the news is useful. (Keep in mind discrete examples don’t make a society fascist.)

Budweiser gave some beer to a conservative influencer, who is trans. Without question, there are some fascists in the US, and, the fasci-hated include transfolk. So there were boycotts announced of Budweiser, for hoping an influencer would do a podcast saying “...and it’s even better sipping on a cold Budeweider!” Sales dropped – but I think most of the drop was that it was all in the news, and it was easier to just grab a different brand of beer, rather than worry about what someone might say to you over your beer choice! A quick note: this idea, that one might not express certain opinions, for fear of being accosted, is called a “heckler’s veto” and it’s considered one of the free speech issues that needs to be considered. You don’t want hecklers to have a veto, and, in a society that’s far from fascism, they won’t.

For me, since I’m corny, I’d say that fascism is what happens when love is squeezed out of society. Cops have to be mean; so does our military; because everyone else is against us, and only we are the good people. “We,” being the favored class, of course. The meanness takes over religion, so it no longer teaches compassion, but mute acceptance of horror. There’s always enough people in the Favored Class to apply beatdown to the “lessers,” so, from the viewpoint of the Favored, there’s no problem. They think they’re winning the battle, when they’re hollowing out the heart and soul of the nation.

Imagine if, when you were little, you had to obey a bunch of extra rules that didn’t make sense to you, and if you didn’t, you’d be hurt. You’d also be hurt, and called weird, all the time, for things that seemed natural to you, or that you couldn’t avoid. Eventually, you’d learn to avoid the “weird” looks and behaviors when you’re with people – with effort. Better to expend the effort than to keep getting punished!

You can imagine a person who grew up with such abuse; you’d probably imagine they’d flinch away from social contact, because it takes effort just to look normal, and they don’t want to be hurt again, when they slip. In a perfect world, such a person learns to stop flinching away, because decent grown-ups don’t mind a bit of weirdness in look or behavior, though they might want to understand “when you’re ready and willing, why the weirdness? Only if you don’t mind my asking!” They would stop being hurt, you see? Eventually, their fears would fade, and maybe they’d heal from the effects of the early abuse.
( this is long-ish. )
And that means, the only hope for my life is to try to be a weirdo that people do understand. So my next step is to try to sow some understanding.

So, I messed up my cut tag earlier. Today, I was celebrating a good day. As I mentioned, I had a good self-statement that I sent to my attorney, and nothing succeeds like success. I'm using RSO, a potent form of marijuana for pain control (NB: which is legal in the state of Washington), and it's helping, and having a honeymoon effect.

And someone said that "we need to write something about the big bad fugly bill, like, Bad Bad Leroy Brown.

It was like waking up. My creative brain could write an utterly obnoxious filk song to the tune of Jim Croce's hit.

I doubt the copyright notice is enforceable - it was a social experiment to see what would happen. I happen to think the tune is quite catchy.

Please note, if you're a fan of Donald Trump, you do not want to read the following. Fair warning, if you ignore it, it's your bad, not mine, if you get upset.

( read more, if you choose. )

Hey, folks.

I've finally had the overall desperation, that I've asked about witness statements we could collect - we, being my attorney and I.

I tried to write a powerful personal statement, saying "doctors, and lawyers, will read this, and each went to school to turn their mind into something special - they were a competent doctor or lawyer. And y'all wouldn't last a year, with what I have to deal with. Think of the humiliation, that I can barely care for myself, after having been a big fish, in my own tiny pool."

So there are things that someone could write about.
"I knew John, before 2010, and after 2010, and he's completely different," is good.
"John has an amazing brain AND
...I can only imagine how bad it is, to have lost that."
OR
...I can attest that he's sometimes just not the John I know."

That's good.

One doctor thought I was having a psychotic break, and cited, as evidence, that I said "Barnstead is a friend of spiders." If you were writing something else for me, and wanted to point out that "John Barnstead is a real person, and so is scifi author Spider Robinson, so saying one is the friend of the other is perfectly reasonable!" that wouldn't be bad.

Um. If I've ever reached out to you, and sounded crazy, but, in a relatively short order (but maybe a day or two), seemed not crazy - or, at least more stable, or more coherent, or whatever, that's good.

If you can say you've seen me have struggles with mental challenges you know I could handle, or, you've heard me talk about them, that's something you can report. If ten people say "he always talked about being so *tired* all the time," that's not proof I was tired, but it does mean I talked about it a whole lot.

If you've seen me have physical struggles, that's fine too. Have you ever seen me break into a huge sweat, like, I'll drench my t-shirt, wring sweat out of it? That's fine. Ever seen me spacy? That's great.

The reason I'm saying I'm disabled is, my neuro pain keeps scrambling my brain so much that I'm not just too tired, I'm no longer even *competent* to do my job, and I'm in too much pain to push a broom. So, any time where you've seen my brain falter badly, and you really wondered "how could he be that *stupid*?" well - if you can make that a fact based thing, "I saw him do X, which he wouldn't do normally, unless, as he says, his brain was misfiring. Because later, he could explain why X was so stupid...."

The timeline is short - my application is going in, in under a week.

Bill Gawne, I wish I could do more than just shout out to you, while I'm under this much stress, but I know you've seen me semi-crazy, then more rational, and, I know you can back me on Barnstead/Spider. I miss the hell out of you; you're one of the reasons the broken brain *hurts*, emotionally speaking (in addition to the neuro pain). Griffen, you too, m'friend. Too many others I can't think to name, or, if I start naming, I'll forget someone.

Thanks for being there if you can't help, and thanks for any help you can give.

So, I’ve been trying to figure out how to say what I next want to say.

Do I dislike who, and what, I am? Of course not. That’s ludicrous. I know that I’m a good person, even though people have said I’m such a horrible person, I shouldn’t even hang out with people who want to see me, because I’m that toxic. Thanks, Pat and Barbara!, et. al.

Do I despise who I am? Even more ludicrous. I was born to understand love and humanity. Yes, I know, some people will view me with contempt and disdain, because I’m injured – thanks again, y’all! – and don’t think there’s any reason to listen to me, to find out if maybe there’s a good explanation for why I’m acting strangly.

Well – do I feel unwavering contempt for myself, for doing, and acting, strangely, in ways that people will later view as contempt-worthy, and hateful, even though I can see that my actions allowed a hateful person to see me as contempt-worthy and hateful? Dude – I really do not do self-hatred, nor do I hate the disabled and injured. Why are we discussing all of these stupid questions?

Here’s why: Do I feel completely and thoroughly ashamed of being someone, who, on occasion, suffers from extreme fatigue, neurodivergence, infrequent emotional lability too extreme to allow rationality, and, do I further feel totally ashamed and worthless, because I can’t always be a mature, responsible, emotionally-stable grown-up able to hold productive discussions about relationships?

Yes. 100%, and totally. It’s why I can’t write anything these days – everything sounds like the whining of an ugly, faceless, useless hunk of biomass.

There’s a song that’s been ringing through my head – probably Odetta’s version, it sounds like her strong, wise, voice, leading “this little light of mine… I’m gonna let it shine….” One of my gifts, insofar as it’s worthy of the name, is, I see lights that shine, better than many. I could see it in both of my brothers – I later realized it was in me, too, but I wasn’t aware of the signs.

Once I hit maturity, I learned about my own heart’s ability to shine, to see joy, and beauty, love, and, all manner of wonderful things. Even better, I learned to have some control over it. I learned to shine it. I could see the effect it had on people. It made me happy.

One really awful thing about being me – about having my particular set of circumstances – is that parts of me shut down, without warning. Once a person sees this light from me, I understand that it can be painful if it’s gone, so I exert a lot of energy to turn it on, when needed, and to keep it going while I’m with someone. But over the long term, my life has been one where the light is bound to go out, and I’m no longer completely human. That’s how it feels, and not having something all humans have is, in a sense, being “not completely human.” You see what I’m saying? I’m human, but something is missing, just as surely as if it was amputated, except, a light to shine can grow back. Hypothetically, at least.

The worst thing is, due to my disabilities, I sometimes turn ugly, in mood, expression, mannerisms, or appearance. Sometimes, even if I know I’m ugly, I’m too tired to fix it. And people can justifiably freak out because of that, you see? I can’t blame someone for freaking out – it’s not a normal kind of ugly, so people have to adapt. The problem is shame.

Because I’m ashamed of being broken, damaged goods, toxic, etc., I never think through how I’m broken, why people say I’m damaged goods, what specific toxins are present, and how can they be neutralized, etc.. I avoid it – it’s past the door labeled “shameful stuff, do not disturb.” So, when someone freaks the eff out, I’m not ready to explain things to them.

Just out of the blue, I came up with “I’m sorry – sometimes, my emotions express themselves in a weird way, due to my PTSD.” But first, I had to confront the shame enough to recognize that I’m not crucifying myself in front of people, I’m just offering an explanation. Instead, my shame leads me to try to ignore the times I’m damaged goods, or toxic, and hope the other person just forgets. That’s not a terrible strategy, to hope a friend forgets a behavioral outlier – but an explanation makes it easier for them to understand, and not need to forget, the outlier.

I’m ashamed that I need to remind myself to be a good, happy-making, human being – it’s not enough to do nothing wrong, you need to do some things that are right. I’m deeply ashamed of having weaknesses that could be pointed to and mocked, which would hurt when I’m exhausted, or mentally/emotionally injured. And I couldn’t tell you, not if my brain clicked on, and I was no longer damaged goods, and not if I had a million years, could I tell you, how ashamed I am that I can’t turn on “this little light of mine.”

I miss you – all of you out there. But without that light, nothing really seems to make any sense, so, it’s really, really, difficult to engage.

(Return Address, inside address, etc., skipped)

Re: “YELLOW CARD” encounter with your provider, Biggus Arseholius, and John Palmer
(refs prior doctor, who I call "Dr. Prior")

To whom it may concern:

Mr. John Palmer has a severe speech impediment, especially under stress. Twice now, your caregivers have pressured Mr. Palmer to the point that he has been obviously flustered and upset. The first time was Dr. Prior, telling Mr. Palmer to “stop fighting him,” when Mr. Palmer was trying, in good faith, and as calmly as he could, to answer Dr. Prior's questions, prior to a medical procedure. Getting a PTSD patient frustrated and upset before a medical procedure is a bad medical outcome, and obviously, scolding is an unacceptable response to a good faith effort to answer.

In the most recent incident, a far worse breach of patient trust occurred. Biggus Arseholius had pestered John until he was upset and flustered, and then, accused him – the patient, John Palmer – of being “aggressive” merely because of the frustration that he, Areseholious, had caused! This is what resulted in Mr. Palmer’s inability to respond to the harassment verbally, which necessitates the use of a non-verbal signal – the yellow card referenced above.

It is natural for caregivers to have problems with patients who are both a genius – and normally appear gifted with eloquence – who also have pain, cognitive impairment, and concomitant speech impediments. That said: those “problems” are what medical training calls “challenges” and, they are on the side of the caregiver, not the patient. Disabled patients are entitled to good care too, and while the patient (yes, me) must also help, the caregiver must be the “adult in the room” who handles things, like a frustrated patient, in a mature, and responsible manner – not an unjustly accusatory one.

To both upset a patient, and then call the patient aggressive, is an extraordinary breach of trust, and a wholly unacceptable patient outcome. Your clinicians need to do better. Due to my speech impediment, I can’t calmly explain why I am upset. Merely answering Arseholius's questions was extremely difficult! Instead, I use a well recognized, non-verbal signal: one that says “what just happened should not happen in any caregiving scenario” – just like a yellow card means something happened that shouldn’t on the soccer field (or, in other sports).

I can provide your clinicians with some advice.

First, if this patient is having problem answering your question, pause, and ask the question a different way – this gives him another mental pathway, through which he might be able to answer more easily.

Second, if this patient is simply trying to provide too much information, pause the conversation, explain the specific piece of information you need, and then, either let him know he’s given you what you wanted, or, if need be, allow him to continue. Just as with a stutterer, John sometimes feels a need to finish an interrupted sentence – so even if you have all the information you need, it is polite to ask him to continue, if there’s more he needs to say.

Thirdly, become aware of signs that you, the caregiver, are causing unnecessarily difficulties for the patient. Active listening and observation allow any observer to see that a patient is having internal, non-obvious difficulties – signs of frustration with everyday tasks are usually easy to spot! The person having difficulty is used to minor issues – e.g., I know I have a hard time speaking sometimes! – but a trained observer can spot incipient frustration. Put another way: a caregiver, who is watching for problems, can, and will, spot problems, like a speech impediment, before the person with the speech impediment becomes severely frustrated.

Obviously, Mr. Palmer can’t return to this clinic until he is assured that no further accusations will be leveled against him for behavior that is fully within clinical expectations, entirely innocent of wrongdoing or wrongful motive, and not remotely criminal. I must be assured that I can be a patient, sometimes even a difficult patient, without being accused of wrongdoing, nor of a desire to do wrong.

There’s a concept I’d like to describe, and I pull it from shamanism, but, it seems to me that it’s something that might be the basis of things like art therapy, where creating art can help people get in touch with their feelings, and sometimes the thoughts and reasons for unpleasant emotions.

When I enter the spirit world, I start with a fixed set of images, to help ground me, into saying “I’m not in ordinary reality any longer.” Well, that’s what I’m suggesting to you.

In this exercise, use a starting image of an “emotional landscape” where you can imagine yourself in any form you like – as a person, as a tree, as a flowering plant, as a spirit of the forest, or the earth, or the water; or anything you like, but, obviously, it’s best if it’s something that belongs in a “landscape.”

( when you enter the emotional landscape... )

(This is the first of a series of essays - they aren't posts like a normal "hi, here's how I'm doing, how are y'all doing?" I'm not ready to read, and respond, though I'll try. These are "how do you live when you are (or, how do you live with) a person who's too damaged for ordinary descriptions?)

I have a problem with forgiveness. I do it too easily. The reason for that is simple: people hurt me all the effing time, and I don’t know when I’m entitled to respond.

All my life (I believe) I’ve had me/CFS. Early in life, I was taught not to complain, and to ignore many things that bothered me. That’s part of the “people hurt me all the time” – things that shouldn’t hurt, can hurt me. I have to forgive those minor, unintentional, hurts constantly. I also I learned that no one really cared when I was hurt, and, when they hurt me, if I complained, it was always *my* fault.

I don’t mean, if I complained about getting swatted to a parent, I got another swat. I mean, if someone hurts me in a social situation, and I try to express that I’m hurt, it’s somehow my fault, the whole situation, and not even a bit of fault for the other person. My pain doesn’t matter. My feelings don’t matter. I have to accept any hurt thrown at me, and avoid hurting anyone, in any way, because I’m the ugly weirdo (brutal truth, not self deprecation). That has to change if I’m going to survive. It might not change. Meh, it happens; people die.

What are the limits? I’ve been thinking about that, and “stuff that shouldn’t hurt me, does,” and “basic human behavior”. Well… one day, in a store, near Christmas, I realized the checkout clerk noticed me wincing at the music and so, pretending she was just being jolly, started singing it, loudly, at me. How do I know she was doing this? Folks – especially we neurodivergent people, but all bullying victims – learn when people are doing that. And wow, do folks hate it when we’re right and call it out!

I want to make one thing clear: I don’t mean she was being a horrible person. She was the equivalent of a big sister tweaking her kid brother; this is a perfect example of a “microagression”. She realized she could hurt some poor slob who just wanted to get home and collapse, so she did. Somewhere, I need to learn the courage and anger to look such a person in the eye, and say “you’re doing that to hurt me. Stop it… no, I don’t want to hear it, just stop singing.” No complaining to managers – it was a (relatively) harmless mistake, and it shouldn’t have hurt me as badly as it did.

Then… I have to do something braver. She might feel stabbed in the gut, like, if her kid brother screamed for mom, she’d say “come on, I was just playing! A little!” if mom was angry. I have to ignore that, stay angry, and walk away. My attitude must be: “You hurt my inner child – I’m angry, until my child is safe and comforted, and *you* don’t get comfort – even if you weren’t a terrible ogre, even if you were ‘just playing, a little.’”

I know how it hurts, to be told I was hurtful, especially when I caused pain without realizing it. I want to help her process, and assure her she’s *fine*, now that she stopped, just, some customers *are* very sound-sensitive, etc., etc.. But it’s not my job, and even if I wanted to take it on, *that* is where things go wrong. Friends will have time to talk it out later; those who don’t talk it out are risky people to hang with. Those who aren’t friends have to learn to deal with their own emotions, so long as I try to be gentle.

It’s crazy to say it, but friends shouldn’t need good reasons to care about another friend’s pain. They should just care about avoiding it! But not all of my pains are visible, and some visible pains… shouldn’t be. What I’m doing isn’t working, so I recognize I have to do better. I have to make the right pains visible, and remember that a friend who doesn’t care about your pain (even if your pain is “weird” or your reaction to it is “ugly”), is not your friend at all.

What are *your* obligations, as my friend? Well, some pains need to be ignored, not stared at, and, as best as is possible, forgotten, even though you are shocked that I suddenly looked so hurt. I could almost have this printed on a card:

“Even if it looks like you hurt me, or upset me. I might be having a flashback to an old trauma, of a similar situation – you didn’t hurt me, PTSD did. If you keep hitting a trigger, I’ll let you know what it is, as quickly as I can identify it. I’m sorry my PTSD makes it look like you hurt me, but, gimme time to get to that, while I deal with the PTSD, okay? First, my trauma, then your comfort.”

Um. Did you see how complicated that got? And how accusatory the ending sounds? You say, or do something, and I have a flashback, and you feel hurt – not unreasonably. I want to comfort you. But I have frickin’ PTSD, so I can’t stop to explain that when I’m having a flashback. Later, I’ll tell you it wasn’t your fault, and you better effing trust me, because it’s dirty pool to blame me for your hurt, when I’ve done my due diligence in reassuring you, right? That’s true for any friendship – if you need more reassurance, ask for it, but don’t decide my reassurance wasn’t enough, not ask for more, and blame me!

And don’t tell me it’s hard. I get that it’s hard. But I’m the one with the broken brain, major depression, constant pain, and constant fatigue, and probably more I’m forgetting to mention, and I can’t do it alone. Do you need some hugs, some cuddles, more verbal reassurance, an explanation? I’ll try to do any of those things (cuddles excepted for most guys), but you need to play fair with me and let me report my experiences, my fears, and my traumas.

Okay, and then, if I say something like “when you argued with me, I felt bullied,” you are allowed to *ask*, “did you think I was bullying you?” and if the answer is “no,” you take it as golden. (It might be *wrong*, but it’s my mistake to make – not yours to correct.) If the answer is “maybe” or “yes”, you have a problem. I don’t think you’re a perpetual bully, but I might fear you were in that situation

The problem is, maybe you sang along to a jolly Christmas song, and it hurt, and I felt you were microbullying – I felt bullied, even though it was just the ordinary sorts of – I think in the UK they call it “piss-taking” – friends do. You rib your friends about embarrassing moments, they laugh, and poke at yours. So: maybe you’ll say “if I ever do that again – whack on you for being oversensitive to loud music – you can call me out. I’ll try not to, but, come on, man, I might make a mistake.”

Right there – that’s friendship. We have an issue, we try to avoid it, if we mess up, we try to make right.

But if you say “oh, come on man, you can’t feel bullied every time someone teases you about being sensitive,” I’m gonesville. I have to be. It’s not that I should feel bullied when someone teases me in that way; and I’d rather not be. But I can’t help it – that’s why I asked some hypothetical person to stop, as a friend would, if they cared. I can’t risk friends who don’t care, not any longer.

I keep wanting to write some re-introduction post, but there’s not a lot of point. Hi, I’m the blog author, John Palmer. I’m a broken brained gimp who is a terrible friend, and I have depression and PTSD.

You’re going to hurt me. Seriously: you’re going to say things that hurt, sometimes just reading what you write hurts, sometimes, just existing hurts, and you’re on the periphery, and it still hurts that you’re there. You can’t avoid that, unless you don’t interact with me at all. And, I’m going to forgive it all, and try to ignore it, because it’s not your fault. You don’t know better, and I’m not willing to tell you enough so you *do* know better.

Why? Well… there’s something that’s entirely absent in our culture right now: compassion. It’s gone. No one wants to talk about it. Strength and forcefulness and “being a nasty (expletive deleted,)” that’s cool and neat and powerful – caring about others is for losers, right?

Anyway, if I need help, when dealing with people, because they hurt me, and I need to explain the pain they cause? Yeah, I’m not going to do that, not yet, you think I’m stupid enough to set myself up? again? Look: I was the butt of one of the biggest jokes I can imagine: this woman pretended to care about me, and understand that I had a lot of problems and was in constant pain and could just barely hold it together without dying, and, pretended to give a damn for, I dunno, a dozen years? And with that setup, managed to stab and crush and tear every single positive part of our relationship, until there was nothing but carbon and rust, being ground into me for the rest of eternity. PTSD, don’t you know. You can’t just hurt us for “just a moment,” whooo, no.

Friendship is bullshit. Because I came out of that relationship, and every friend I had told me how much they loved both of us, which is codeword for “John, don’t seek help from *me*”. Thankfully, two people talked to me, believed me, loved me, and caused me to continue to live. One of them died, and I can deny I’ve been tempted to follow.

Because I’ve learned there’s nothing I can say that will ever protect me from evil. Compassion is not for weirdos like me. I’m in too much pain, so, I can’t point out the *ONE THING* to do to stop the pain. Who wants to put up with that?

I can’t push back in a relationship, so I’ll always be pushed around. No one will ever have to say “no, John, I care about *your* problems right now, stop worrying about how *I* feel.” Well, a therapist might, but, a therapist is someone you pay a lot of money to, for an hour of listening to you, and if you can’t SPEAK, that’s a big waste of money.

That’s why I get pushed around. When my brain is broken, I can’t speak properly. I can’t put big ideas into words. I can’t have a discussion in which real problems are solved – I can only get yelled at, and told I’m wrong, and meh, it happens, people die.

Well… I’m sorry, but, people *do* die. Mortality is part of our fate. And, meh, it happens. I get yelled at, feel like crap, and decide I’m so desperately lonely I’ll just lick the crap off and go home and mope about it. And, again, I say, meh, it happens, people die. Lots of people die from loneliness each year.

You can argue with a lot of what I say, but, don’t argue with me over “Meh. It happens. People die.” People die from some of the most petty crud imaginable, when it lands on them on the wrong day. And people like me, we have to remember that if we let up our guard, we will be one of the people who die. So, as flippant as it sounds, “meh, it happens, people die.” Remember that if you dare – it’s not one of those “happy thoughts” you use to fly in Neverland.

I don’t dare trust friendship, and I don’t dare trust my broken brain. See, the pain I feel, it’s neurological. If it overloads my brain *slightly*, I’m forced to go through a lot of error-correction, and I find I’m a lot stupider than normal. If it overloads my brain completely, well, it’s like I took a sudden, minor, injury – I’m in real pain, both physical and mental/emotional. This is one of the things Pat took major offense to – me failing to hide my inescapable pain. That’s hilarious: any time you see me acting the least bit cheerful, I’m hiding my pain as best as I can, and it’s not for my sake that I’m hiding it. Still, that’s the problem, right? My broken brain makes me a target to other people. Even people who recognize that I’m having a terrible pain reaction – even when I’ve explained it’s me, only, and not a bit their fault.

The PTSD, well, that just means I can’t talk my problems out. See, I say “I felt like I was being bullied,” gets turned into “HOW DARE YOU ACCUSE ME?” no matter how carefully you try to explain “I need to say how it felt, so we can try to avoid the same thing happening.” So, I end up just ignoring how it felt. It doesn’t matter, because it only matters to me. It’s invisible, just like my pain.

I have a new pain doc. He doesn’t care that I have a speech impediment, nor that my brain sometimes misfires, nor that I’m in such enormous pain I don’t know how I can survive much longer with it. He does care about me answering questions correctly (even when the questions are not *presented* correctly), in getting me to “stop fighting him” (by trying to answer his questions, note), to telling me he’s plenty empathic and compassionate, so shut up and let him shock me and stick me with needles.

My wife wants him to shiv me in the spine and stuff steroids inside me to kill my blood sugars so I die slowly and painfully, but, only because it would be really inconvenient to wait for a doctor who hasn’t re-traumatized me already. It’s ugly, when you freeze, and immediately go into a toxic form of subspace, where you’re terrified to ask questions, or do anything that might make the bad man hurt you more. But she wasn’t there, so, my pain doesn’t exist. Meh, it happens, more often than I care to count. And if I ream this doctor out properly, maybe I’ll keep him from killing other pain patients. But, hey, PTSD, broken brain, wife doesn’t care (so she doesn’t want me making a fuss).

I really don’t know how to live any more. I’m going to, and going to keep trying to figure it out, but the answer used to be “love” and “compassion” and bullcrap like that. I need a better answer. I wish like heck I had one.

I got my best possible wedding present from my dear departed friend and lover, Deborah Ruppert. One day, she realized I was completely emotionally frazzled, and wanted to help talk me through it - something she was *very* good at, I might add! - and I was once again trying to push her away, though she was one of the people I trusted most, when I was feeling that way. I explained that I knew *all* of the techniques she was discussing, I could do those things in my *sleep* (arguably, I have), and yet....

She suddenly intuited just how hard I work, 24x7x365, keeping my emotions under control. And it was like, "OMG, you have an axe sticking out of your head! I bet it hurts!" And now that someone said it, I could look in the mirror and say "why yes. It's funny - it's a really old pain, but no one, no one ever, ever, ever, mentioned it before." Now, I could have figured out how hard I worked to maintain emotional stability if asked the right questions, by someone who knew the right sorts of questions to ask, but, I had no real guidance on how easily most people managed their emotions.

Instead, she put it all together - the times she's seen me having problems, and what other signs she sees at those times, the signs that my resources are just totally drained. Today, I know why I have so many problems managing my emotions - I'm in constant pain, and I'm having constant other neurological effects, and those both drain resources, as well as impinging on one's emotional awareness. In other words: people can do things that hurt you, just as much as if they given you a hearty, affectionate, slap... over a sunburn. It's normal to feel angry about, or afraid of, being hurt like that, but if your pains are invisible, you can't show any emotional reaction, or people will think you're weird.

So I've gotten really good at managing my emotions, because I've always had these pains that were invisible, so I had to keep them hidden - or so I thought. Still: Deborah might have saved my life by affirming my pain, and my skill at handling it.

Um. To avoid burying the lede - yes, y'all can accuse me of that a bit, already - I did mention a specific type of gift earlier, right? And, anyway, one day, I was explaining to my beloved Mildred Uzoma how a bad encounter had happened. First, she joked about how horribly stinky something was, causing me to have sudden nausea. "NOT her fault," my mind conveniently and immediately supplied - see, that's emotional state control, don't attack Milli. Until I explain I have a tender stomach, she can't account for it. But, I explained, that was what put me in the state Deborah Ruppert had noticed.

And so, I explained, when *Milli* suggested maybe I didn't need a shoe brush if I didn't want to get it from her preferred outlet, I blew up, because I was the one who wanted one, and knew damn well where to *find* one.

Well, at that point, she wanted to explain to me, she didn't mean *that*, and I shushed her. I explained to her, it wasn't *important* what she'd actually said. As if this had anything to do with her at all! Ha ha, no, this is how you handle your husband-to-be who is sometimes out of resources so his embarrassing defects all show up - surprisingly frequently, these days! - and he gets angry for no real reason. I *am* damaged goods, you know.

Something happened. I knew she was empathic, and a hospice nurse, so, she knows emotions are sometimes irrational, so maybe I shouldn't have been surprised, but, when it happened, I realized I hadn't thought it through. I shouldn't have been "not surprised" by her reaction - I should have expected it! Me, apologizing for my behavior in that specific context, had landed with the same dull thud as if the situation were reversed - if *she* had made abject apologies to *me* for being... an ordinary human being with the same irrational batch of emotions we all have. Oh, sure, *sometimes* our emotions are rational - but if they were purely rational, we'd call them "thoughts," not "feelings."

I don't know who said it first but, it was something to the effect of "so what if you're angry for no good reason, once in a while? Emotions aren't always rational, and we can always talk it out later." In my mind, we were married at that point, and not on September 4th, 2024, in Renton City Hall, but, the latter date *was* the date of the actual wedding, and my shoes were still well-enough shined that no shoe brush was needed... but I now have multiple such brushes.

Um. So let's say I indulged in foreshadowing, not burying the lede.

Here's the thing: in the past, appearing angry was equated with being abusive by far to many of my acquaintences, and, every time I tried to understand what they meant, in saying something that seemed so wrongheaded to me, I kept getting frustrated. Well... that's because my perceptions are different, so my language is different. Look: if you look at me, and you think I'm angry, good on you. It's perfectly fine if I display my anger. In fact, I suspect Milli helped me there, too, once.

One day, early in our courtship, I gave her a big hug from behind, and I know she could tell I had a strong erection. I couldn't explain why I knew this wasn't a problem, even though I knew it violated some rules people had suggested for dating. You see, the context was, we were doing some BDSM-y play, I paused to hug her, and then continued our scene. We shared some affectionate cuddles afterward. And this is akin to questions about displaying emotions.

"Should I have demonstrated my erection?" is the wrong question. "Was it okay to demonstrate my erection?" is also the wrong question. "Should I have prevented her from noticing my erection, if she did so incidentally to an innocent hug?" is the right question, and the answer is "no". Of course, even that answer can be abused, by an abuser, but the point is, it's not whether something is *visible* (or palpable/noticeable), but whose "problem" it is. My erection/arousal is my problem. If someone opens their boundaries to making it *our* problem, and consents, now we have a shared problem to solve - lovely life you're leading, if this is your biggest Problem Of The Day, right?

Well, this is the same thing as with emotions. An abuser thinks his erection is his intended victim's problem to deal with; an abuser thinks his anger is his victim's problem to deal with. Me, I think an erection, or anger, is mine to deal with, unless someone offers to help. And that's why it was so hard to discuss things with people in the past - they equated a display of anger with abuse. But it's not - it *can* be, especially to a person who thinks "you made me angry" is a "you" problem, and not a "me" problem. But, fuck, people are angry all the time. It's really pretty surprising, given how much the NTs scold us NDs to keep our emotions in check!

Anyway: emotions are much the same, and, just as fraught and rife with contradictions as early erotic activities. It's not just visibility, it's visibility, and actions, boundaries, and, goddamned it, *communication*, and a lot of other things. The primary takeaway is, if I'm hurt, frustrated, angry, as long as those are *my* problem, that *I* am trying to deal with, well, that's okay - no matter how rotten my poker face is, nor whether or not I choose to try to wear one in the first place. I know, I know, I'm contradicting the advice of probably a dozen of people I thought were friends, but, hey, I've been wrong about that kind of thing plenty of times. I'd rather be wrong about *who* is a friend, than wrong about what *friendship* is.

Anyway: the important part here, is, shortly before the 4th of September, Milli and I had a discussion in which I apologized for being human, and in return, she acknowledged my humanity and proclaimed her love for all of me, something no woman has ever done before in my life. That was the moment I was, in mind, heart, and spirit, married. Corporealy, and legally, that was the September 4, 2024. My birthday's a week later, her's is two weeks later, and the 28th is proposal day, so we have a month full of anniversaries - 4th, 11th, 18th, and 25th.

I have to admit, there are a lot of times when I don't have any idea why I'm alive. If I had cancer, I'd know I was struggling to get past the chemo/radiation, so I could resume my life, but I never really had a life to resume.

I don't have time or energy to socialize, and I know that socializing will do more harm than good. People are only ever my friends if I sneak in my weirdness under their radar; afterward, I can remain good friends only so long as I'm not a bother. It's just better not to allow myself to be a bother in the first place.

I can't read; I can't write; I can't speak; I can't listen. I remember all those years where I was dumbass enough to try to maintain friendships, for when I'd be better, because I thought there was a chance of things getting better. I learned the hard way that trying to maintain friendships just loses them, with people angry that I fooled them into being my friend.

I know part of the problem. I learned my empathy from cats. Cats love to be touched, if they trust you, and, if you're willing to learn what kinds of touch they like. Well, if you're used to stroking a cat to make a cat happy, you know much of what you need to make a woman happy, from the "don't act entitled to attention, or the cat might scratch you," to learning the spots of purr-stimulation. Well, both cats, and people, expect similar behaviors over time. Once I'm too tired, emotions scorched numb, no sense of happiness in anything, I just kind of forget that I enjoy touching, because it becomes too much work.

It's not just touch, of course - it's everything. I come across as someone I'm not, because my brain and emotions say "do good, happymaking things" and my body says "screw you, *with* the horse you rode in on." Well... my body does know its insults, to go with its injuries.

I like happiness, and I think it's because I know how important it is, just like a person in the desert knows the value of water - even when you might have plenty at the moment, you know it's precious and to be protected. I can't have much of it for me, but that's no reason that others shouldn't.

But I can't help make people happy any more, so there's really no *point*. There's just this stupid hope that the chronic fatigue syndrome, which started in my early childhood will sudden get better, now that I'm in my late 50s. Which, let's be honest: it's not likely to happen.

A few days back, I wrote this:
I did something good today, and I finally understand what it was.

It's hard to exercise when one has CFS. It's twisted - you only know if you did too much, when the price tag reveals itself, hours later, or overnight. And if you always feel like shit, you might not even recognize the price tag when it reveals itself. But I'm officially a full blown diabetic now, and that means I must exercise.

So I was walking. Ten minutes, only as fast as my legs wanted to go, and a nice dose of Vitamin D. That was a good thing, but, I mean, of course it was. Walking helps reduce fluid pooling in the lower body, and has a nice clearing effect on acute blood sugar. It helps protect the heart and kidneys.

If anyone ever reads this, and is afraid of diabetes, don't be too afraid. There are now miracle drugs for early stages of diabetes, and they won't mean you can have a big gooey sundae for dessert each night, but they will mean you can eat a realistic diet, with splurges allowed, and still keep your sugars low enough that you avoid being damaged by your blood sugar levels.

But you'll still need to exercise, and exercise doesn't have to be beastly. It can be a few intense minutes on an exercise bicycle, doing interval training; it can be a nice, slow, supremely gentle exercise you do, in your living room, so you can watch TV, not just your iPad/tablet(/PHONE? Say it isn't so!). That method works well for me; my treadmill is in the living room, facing the good TV, and no one argued because:
1) they love me and understand my needs, and
2) technically, I kinda own the house.

Still: owning the house just meant it was there when they *got* here, see? Now, it means they'd either set me up an enviable exercise room, or, keep the treadmill where it is. And I love the idea of the treadmill, because, so long as you don't need to look at your feet, you can walk as slow as you want - 1 mph, if that's your speed. If you can do that for 10 minutes, but you need the distraction of a good TV show, that's ten minutes of walking you'd never get otherwise.

If you *do* need to look down when walking, treadmills should be considered risky until proven safe. Your eyes and legs can't coordinate easily on a treadmill, because they're getting different messages. If you look at your feet, when on a treadmill, your eyes see no forward motion overall, but some backward motion. That's confusing enough. But the feet are insisting you are moving forward. Trust me on this: your legs (and likely the rest of you) are constantly telling your brain things, like, "we're moving forward". In general, "you" have never needed to know that, becuase "it just works."

PS: as you age, treadmills can become suddenly, unexpectedly, dangerous. USE THE DEADMAN CLIP!!! If you fall, most treadmills can sand the ever-living F out of your skin. You don't want that - what if your skin becomes "loppy"? Plastic surgeon can't cure loppy skin, so, don't get the F sanded out of your skin. If you're too arrogant to use the clip-on "emergency brake", I'd urge you to find a good bicycle (try out a recumbent), or an elliptical, if that's reasonably possible. (Remember: no one needs to know you did it out of arrogance :-).)

Where was I? Right, I saw a woman, seemed elderly, and she was having a lot more trouble walking than me. I passed to her side (I didn't want to startle her) and asked if everything was okay, and when she said yes, I said "glad to hear it." But I did want to be sure. She was going a long distance, for someone struggling as she was.

That said: who the heck am *I* to judge whether someone walking, while struggling, is struggling too much?

I was going to continue on my way, but, damn it, my brain served up the right scenario for me. Once she was getting across the street I was on, I kept my distance, and just asked, "You'd let me know if I could help, right?" and she laughed and said she was fine. Then my brain threw in a bit that would help, if she was like me.

"Okay; I was just worried, it's getting warm, and wow, what a bright sun!" Then I waved and walked away. If she was self conscious about how she walked, I just gave us a face saving out, I was only checking because of extreme circumstances. It was a white lie; it was about 78 degrees at the time, but it lets us both feel confident it was just me being neighborly. I wasn't saying she shouldn't struggle so much, and yet, if the struggle is too much right now, I'll help. Because something something sunny day.

(end quoted)
Twenty-four hours later, I realized the above was composed during a period in which I risked slipping into hypomania, due to poor sleep, due to pain. When I feel really good about stuff like this, it means I could be going crazy, acting with a tinge of irrationality, but not so much irrationality that it seems impossible.

I can't keep it up, and so, sooner or later, I stop being fun, and I might even present a burden, and then my ass gets kicked to the curb, usually with a sense that they're angry I hid the awful truth about myself from them. It's true - I pretended my life wasn't a living hell, because no one wants to deal with that. Then, when my life *being* a living hell interacts with our relationship, well, fuck, you don't think people fight to hold on to me, do you? No, if I want to retain the friendship, I must ignore the pain they've caused, and prepare to swallow more in the future.

Thankfully, I've learned from Pat that I don't need friends, so, no worries. Friendship is far too dangerous for me. It's not that I was an idiot for believing in some of the stuff Spider Robinson talks about - he writes good fiction for normal people. I was just an idiot for believing it would work for me, while I'm still damaged goods.

Maybe someday.

Today, I have a good reason to talk about one of complexities of my life, especially since it might help others.

Last post was about how to recognize pain. One crazy part, is, pain can also mimic emotional distress. I long thought that the intense pains I felt were emotionally based; they were often accompanied by memory and emotional memory flashbacks. They aren't. It's the pain that's linked. And in the process of discovering this, I learned a bit about EMDR.

But first: I'm going to talk about "links" here. The brain retrieves memories by what is linked to the memory - the more links you have to a memory, the easier it is to retrieve it. And there's more to it than that. For example, if you were brought up hearing that "greed" was despicable, you might call your toxic ex-partner "a greedy filty SOB... no, make it a greedy, lecherous, elderly pervert!" Well, that's the sort of thing I mean: greedy makes both lists. When you're angry, you think of the things that you think are despicable. So I'm not talking about anything truly strange, here, and there's plenty of science backing it up.

In my experience, when I'm having a lot of neurological pain, it's easy for bad emotions to be triggered. Why? I don't know, and I'm really not a person who can say what is *really* happening. It might be just what I mentioned above - when your brain is experiencing pain, you might remember similar pains, including iconic memories. But I also think, if your brain is receiving a bunch of stop signals that it can't interpret, it might stimulate different types of thoughts and reactions, including memories and emotional states.

Bad memories can become self sustaining, when depressed, or, when PTSD is involved. This isn't exactly controversial, which is why I think neuro-pain can trigger spontaneous flashback-like episodes. That seems to match my own experiences.

That's what brings me to EMDR. When I first heard it described, I thought it was bullshit. As stories came in that it helped, I remained potentially skeptical, but, hey, if it helps, it helps. In the end, you have to cure yourself of PTSD - other folks can only help you understand different tools that might help, but you're the one who is triggered, so only you can learn to handle it. So if EMDR helps you, please understand, I respected your use of it, even when I didn't think it was useful. Yes, even when I thought it was bullshit - after all, I turned out to be wrong. It happens. And when it happens, I sure can't say it was silly for someone else to believe in something that hadn't convinced me yet.

Anyway: if you don't know a lot about me, I'm a "shaman" which just means I am used to operating in different conscious states. Also, while it's none of your business, I don't use consciousness altering drugs for my shamanic work... not even tobacco. I recognized that my conscious states weren't working well, so, I worked with a known method for manipulating thoughts, feelings, and consciousness.

My ability to change my consicousness allows me to pull free of a lot of "traps" that PTSD sets for me - I recognize the trap in my brain, and I'm able to remember that I don't have to be this way, and modify how I'm handling my situation - all of my situation, including my pain, and my RL and emotional memories. (I flashback to bad emotional states, which is worse than remembering a single time when I felt a horrible emotion.)

Shamanism helped me a lot, but it just wasn't enough. And then, one day, I just decided, "I don't remember anything about EMDR, but, I do remember it deals with moving the eyes." Now: the story I'll tell sounds like it worked the first time. It probably didn't. I probably tried "rem-sleep" eye movement - eyes moving behind closed eyes. But my memory sucks - I don't remember how or when I first tried EMDR. I don't have the ability to remember that far back, so, let me present what I did find, and, again, remember, I'm not promising it worked like the proverbial charm.

If I'm in pain, and I'm facing flashbacks, if I open my eyes, it helps center me. "I am no longer there; this is no longer that time," is a good capsule synopsis If that's not enough, a quick eye shimmy will bring me back *here*. Well, once I'm "here" I'm just in pain. Just being in pain, rather than having pain and emotional responses, is a decidedly mixed blessing. Sometimes, it might be more pro-survival to wallow in a bad memory, while neurological pain is causing you a big problem. (No, I'm not kidding - neurological pain is no joke. Sometimes you need a counter-pain you can chew on to feel able to stand up to it.)

The key takeaway from this, for me, is, first, if you have flashbacks, it's not impossible to seize control back. EMDR might help, but more important than the type of therapy is getting you able to ride out any mental/emotional storm you're going through. You can get through it - I don't know precisely how *you* will get through it, but I do know you (general you) can, with the right help and support.

And here's a secret no one is likely to tell you: once you can cope, just a bit, it becomes easier to handle the day to day stresses. If you know you can use EMDR if the pain gets too bad, you might realize you can shandle more pain, without stresing, because you can always find a quiet place for EMDR-coping. If you can force your imagination to modify a flashback scenario, again, you might find you're not as afraid of flashback scenarios, because with some effort, you can seize control. Hell, if you find that you can clear your head by, e.g., sticking your hand/arm into a bucket of ice water, well, keep ice handy, so you're always ready for an emergency, and you might find you need it less frequently as time goes on. Any method you can use to help you cope gives you the ability to cope more, because you'll finally have the ability to find a bit of peace.

The second takeaway is, sometimes, when you think pain is emotional - *especially* if you feel weak, unable to control an emotion - it might be neurological pain manifesting. Taking a good look around might make it easier to control your emotional state. Or, you might do actual EMDR, which, remember, I haven't done. It doesn't matter which; just remember, if it works for you, the way it works for me, it means that you'll switch from emotional pain, to neurological pain. That might be good - it might help you isolate its triggers. It's still a very mixed blessing.

For me, my neurological pain seems to be tied to something that's too complicated to explain, but, the term I use is "the unwinding dance". For me, that means I have a sense of whether or not I have a reasonable chance of feeling better, and, it also means I have an idea of what is triggering the pain, and I have some methods of alleviating it.

I also suspect the way I feel - the sense that my body is tangled up a bit ("Marionette String Syndrome" is what I call it) might someday give us more information about how and why neurological pain occurs. All of these are topics for another day, but, if I'm ever going to do anyone any good, I want to introduce these terms - unwinding, MSS for Marionette String Syndrome, etc. - so I don't have to explain them every time.

Housekeeping note:
I'm still in survival mode - I'm not reading responses, because I don't have the spare bandwidth, not yet, but I have some stuff I want said. When I get a block of writing done, I post it. I care about responses, and hope to read them soon, but I can only say it will happen when it happens.

Start of post:

The most important thing I want written - and to see widely read, of course - is some information about pain. Because, as I mentioned, I have been in pain most of my life, but I didn't even know it. Part of this is because the doctors said I was fine, so my family thought I was fine, and told me nothing was wrong. After a while, I believed it.

Another big chunk of why it took so long to figure out is, most of what I experience, I've experienced to some degree all my life. If you start having weird feelings one day, you can say "this isn't how things used to feel; although I wouldn't call this 'pain' (nb: yet!), it's certainly unpleasant."

It's a lot harder when you don't have a before/after, and, even then, pain is subtle. For example, when I was 13, I realized that, sometimes, when I was reading, the words just didn't transmit - and I wanted to close my eyes, and sleep, the whole time. Well, you can guess what they decided back then: I was bored, right? That sounded okay to me - don't comic strips and such show people yawning when bored?

Well, I can tell you now, it was pain that made it hard to read, and it was pain that made me close my eyes after reading a few words, but it wasn't any kind of pain I could describe. What I can say, just to make sure we're clear, is that I could keep my eyes open, without any pain, if I looked at anything other than words. It wasn't that my eyes hurt - it was that *reading* hurt.

As I said, this first happened when I was 13, and now, with a lot more experience, I realize how the subtlety of pain also made it difficult. There was a before, and an after, but it was "here, for the first time, my ability to read without pain was outstripped by my need to read, by a lot." I felt the same pain before that day, but never to that level of intensity, where I couldn't make myself plow through what I had to finish. So even if I had known that "sometimes, reading hurts my brain," it still would have taken me a good many years to realize how frequently I felt the pain.

Which brings us to the main point of this post, I suppose. Why do I say "reading hurt"? What does that mean?

I have come up with a three part test of pain. Obviously, this works for regular pain - where else could I create a test from? My point is, if you felt anything that you disliked, that met this test, then I'm betting you had pain. And if you weren't having some oddball neurological pain, well... if what you feel is just like pain to this test, then it seems like it really merits attention and study, to learn what it *is*, if it's not pain.

The first part of the test is that, at some point you are definitely in pain. If you get a literal pinprick, we all agree you were, for a moment, "in pain". Not all pain is pinprick-able, so, I think of something like a minor tension headache. If I ask if you have a headache, when you feel tense, you might need to stop, and think - is it just stiff feeling or painful? And if so, you'll agree, you have a headache, and might even remember having noted it earlier.

So it's either something that can bring you up (like a pinprick) or a continuing unpleasant feeling. You might kinda forget the continuing style, but, you can check-in periodically, and recognize it's still there, until it isn't.

The next part, is, can it increase, and become harder to ignore? Because, again, pain can get worse and become much harder to ignore. It becomes something you can compare, like "yesterday was a better day for this unpleasant feeling than today is." And it eventually becomes something you do compare, even if unconsciously.

If you find that you can remain standing, or, sit near someone you don't like, because they'll do that thing that triggers your neurological pain because they think it's funny to see you react, then, you pay a "standing room only" tithe against the expected pain from the bully's interactions. That's what I mean, you compare it. You can't help but compare it, because it's a real pain signal, see? At the least, when it's intense, you wish it was less intense.

Finally, if it happens, can it make a person scream? I say "can it?" because sometimes you can stifle the scream, while acknowledging the essential screamworthiness.

So, when I said "reading hurt," I meant that there was an unpleasant feeling that I can't describe associated with it, and when I was 13, there was a time when that feeling was *way* more intense than I'd experienced until then. I'm saying it was so bad, it was like sticking my hand in too-hot water. I could force myself to do it, but only in small amounts, and, just like with too-hot water, the more I was burned, the longer I needed to rest before I could dip them in again without yanking them right back out.

Could that feeling make me scream? Yes, but not from reading. The other side of neurological pain is, certain types, at certain levels, literally muck with my brain. If I'm in too much pain, I stop being able to read - letters no longer look like anything but markings. So, can reading cause anything past that point? Literally (in all senses of the word), no.

That same feeling can make me scream, if it catches me by surprise, but I learned not to be around *anyone* if I could still be surprised by that pain, for a long time! So if you've ever been with me, and saw me suddenly wince, without any obvious physical pain, that was as likely as not me stifling a scream that I knew/know will just make me look weird... well, weirder.

You know what really sucks, growing up in invisible pain? Every manifestation of your pain is treated badly - at best, you're a whiner, a precious snowflake demanding special treatment.

You know what really sucks about being an adult, afterward? I've been trained not to expect any special treatment, and to apologize anytime my invisible pain manifests, and explain it's not the other person's fault, and so on, and so forth, and, I still get shit on for whatever reason is invented on the spur of the moment, as soon as a manifestation of your pain is sufficiently bothersome to someone.

Don't get me wrong: socialization difficulties are not the worst part of invisible, horrible, pain. The worst part is usually the 'horrible pain' part. Still, think about how twisted life gets, when you're in pain, but can't even say "I hurt," because the horrible feeling you are experiencing isn't one that makes people go "ouch". So a person can be the bad guy - the HORRIBLE guy! - just for letting pain show, unless everyone agrees that it's okay for that person to show pain.

In my humble opinion, these thoughts give new meaning to "treat people with kindness, because you don't know what burdens they might bear." They, also, might not know, and might be in sore need of kindness, even in the face of crankiness. Some days, everything hurts; it's okay to need to struggle with "cranky".

Anyway: this test isn't perfect, by any stretch, but, if you feel something, that passes this test, and you know _something_ about what causes it, it's worth knowing more about it. Is it serving a good purpose? Sometimes it is, just like "ordinary" pain. Sometimes, it isn't, like phantom limb pain.

Anyway: if you have bad feelings, not something you describe as pain, and it varies, and can definitely get really bad, well, it's probably pain. If it's *not* pain, it's still pretty horrible, so it merits attention! Because, for me, one of the things that was surprisingly difficult was giving myself permission to acknowledge that something was intolerable, just because I had a strong, scream-stifling reaction to it.

No one had *told* me it was intolerable... so how did I dare call it intolerable?

Hey, folks. It's been too long since I posted an update, and things have been unbelievably complicated with my life.

First, I have Chronic Fatigue Syndrome, a nasty neurological disorder that is probably the cause of me being in pain my entire life. Yes, that's right - I was in pain as far back as I can remember. When I was 27, and realized "other people *must* have more energy than I," I was right, but I was also understating my problems to an unbelievable degree.

The biggest reason why I didn't know I was in pain, is, my pain is neurological. Neurological pain can present in a lot of different ways, because it's what you feel when your body is saying "STOP THAT!" but not in any of the normal ways. The other reason I didn't know I was in pain, was, doctors said I was fine, so my family said I was fine, so I eventually stopped saying things weren't fine.

When I'm in pain, my language processing can go offline. I can't read, or write, or speak, or listen, the way I normally can. A lot of other crap can go offline, too - the more pain and fatigue I suffer, the less I'm able to do anything. In fact, that's my fatigue marker: when *everything* is harder than it should be. Which, if you think about it, makes CFS one of the more annoying disabilities to have.

Just this year - after suffering from extremely disabling issues over 4-5 years - I finally realized "if I can't hold a conversation - HOLY CRAP! A disability lawyer can tell me what tests to take, to prove I'm disabled!" Up until that point, I was freaking out about how to apply for disability, when my brainpower was so severely curtailed so much of the time. The idea that the severity of my disability would make my job *easier* once I got the right attorney just didn't occcur to me. That's how constrained my brainpower gets.

Anyway. Most of my life, I didn't want to live. I mean, what was I living *for*? I was constantly in pain and miserable, but I didn't know I was miserable *because* I was in pain, so, I couldn't solve the problem.

Later on, when my ability to be sociable was constrained, because my disability was clearly apparent to any casual observer, I was told I was a terrible friend, a hideous lover, and given the clear message that I should not accept companionship from people who offer it, because they might not enjoy my company any longer.

I knew that I wasn't a great friend or lover at the time, of course; I was just trying my best, as I always had... just like I always do. Oh, I fuck things up, make no mistake, but it's not because I don't care. In many cases, it's because I couldn't explain. But does it matter? There were plenty of unkind facts hurled at me, by a hateful bully who had me helpless.

That there was factual basis to the attacks hurt; it always does. But worse, it showed that doing my absolute best just wasn't good enough to avoid being savagely attacked. If you've known me for a good many years, you've heard me say it: sometimes it's not what is *said* that hurts, so much as that it is said to *hurt* you. That a person who knows your secrets is hitting your vulnerable points.

Anyway: that's when I started wanting to be dead, because what's life without love and friendship? But I couldn't talk about that, because no one understood the situation. And right now, I can only communicate in limited bursts, even if I wanted to. I think I'm healing. Of course, there's the sense of having failed epically at everything I've ever tried to be or do, but I've been dealing with *that* for some 50 years, so I don't think it'll kill me this time either.

And, I am alive. If I get long term disability benefits, I expect I'll stay alive, barring horrible things. See, now that I understand I'm in pain, a lot, I can start working on solving, or reducing, some of the problems, because I know their cause.

I can't fix the most critical problem - the pain and exhaustion that means I'm destined to watch life pass me by, because I'm too damaged to enjoy it, but, once I can devote my life to getting better full time, maybe I can fix a bit of that, too.

I have more to say, later.

I'm sorry I haven't been more communicative, and I'm especially sorry I have to be melodramatic here, but, for the past few years, I've put so much effort into staying alive, I haven't had much else left.

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johnpalmer

November 2025

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Recent Entries

What it's like, Part 2

What it's like, Part 1 (of, perhaps, "many")

Psychology and Neurological Pain

Have you really thought about it?

Why I'm a "creep."

Attempted essay: fascism definition

A story about abuse and recovery

Whew...

(no subject)

So, quick help request - no pressure, seriously.

Dislike? hate? contempt? How about....

Letter to doctor's office - thoughts welcome.

The emotional landscape - an emotional/spiritual exercise.

Forgiveness Problem

Closest I can come to re-introduction

Life updates

Thoughts on empathy

Neuro pain, emotional pain, and my experience with EMDR-like therapy

Invisible pain, and making sense of it.

Still alive.