conuly

I used to say it feels like my body is all tangled up, as if there were strings connecting me together, and the strings were tangled. I’m now 95% sure that what I’m feeling is bindings in the fascia. The fascia is like a sub-skin suit that connects disparate body parts, and, can form adhesions, so, Occam’s razor suggests that “it’s the fascia,” is the right hypothesis for me. Nevertheless, it is possible to feel a string-like connection between two indirectly connected body parts, and, it is possible to have a sensation that you’re unwinding a string or thread (or thick copper wire, or a tightly coiled spring…).  It just means the fascia traced a line (that might curve, like a string), rather than doing anything involving surfaces.

My horrors started when I tried something called “cat stepping,” but cat stepping wasn’t the cause of the problem; it merely uncovered the problem. If you’ve seen a cat walk, they put down the front of their foot first, then drop the pad of the foot. Cat stepping is where you put down the ball of your foot first, then drop the rest of it. When people walk, they tend to do the opposite; drop the heel, then let the sole flop down. It seems (at first) like it would be slower, to cat step, but it isn’t; it quickly becomes natural. One great advantage to cat stepping: if you’re about to step on a Lego™ block on the carpet, you won’t put your full weight on that foot, before realizing something’s wrong. It also allows you to walk much more quietly, and get a feel for the surface (does it feel like squeaky wood? do you feel a branch, that might SNAP when you step down?). But the miraculous thing is, it forces your legs to do what they’re designed to do, in terms of distributing your weight, keeping you balanced, and using the right set of muscles, at the right time, without any (excess) jarring.

In fact, one day – and I must confess, I’d been using my medical marijuana to the degree that THC certainly could have played a role! – I realized I could feel how my legs weren’t set correctly; they didn’t fall into the right neutral position. In fact, my entire hip was twisted around itself, like I was walking heel to toe, with my left foot in front. At other times, with and without Mary Jane’s help, I’ve been able to directly engage my position-and-motion senses: kinesthesia and proprioception, and maybe a couple-three others.

Now: short form, I believe that the fascia provides the position-and-motions senses, and, further, I’m so smart I am sure the fascia is a living analog computer that turns a command from your brain, into a command to a bipedal form. That “form” is your body, if you’re perfectly aligned. The bipedal form is something I call “the homunculus” if your body is mal-aligned, as mine is. I often say that I imagine Simone Biles and I have similar masteries of these senses, her, because she can use hers, and maintain it in pristine condition (like a rarely driven Classic Car) and me, because I’m rebuilding mine like a bad engine in a Classic Car you really want to drive a bit before it goes to that great junkyard in the sky!

As a side note, with all respect to Ms. Biles, my hypothesis suggests something interesting. During her first Olympic appearance, she dropped out of competition, with a case of the “twisties,” which she attributed to mental health. Now, I understand what she means: you need to be in good condition (mentally) to fully understand your body and how it all fits together. But I think what happened was, she got tweaked, just a bit, and had neurological pain. The pain interfered with her normal senses, giving her the “twisties.” The pain was also a background buzz in her skull, which made her think “mental health,” and not “physical cause triggering neurological pain.”

There: I’m done talking(bragging) about the hypotheses I’ve formed from my recovery!

Anyway: cat stepping taught me that one can feel one’s body, and almost “see” how it fits those x-rays that show a “tilted pelvis.” But it also engaged all of my muscles in a certain way, that broke some central binding in my body, and ever since then, I’ve been doing the “unwinding dance.”  I’ll feel ill-at-ease, just like you do, if you ever feel something funny in your elbow, shake it out, and it clicks into place. It’s the same “ill-at-ease” sense, but, where yours was a caress from a lover, mine is often like “NO SAFEWORD STOP NO MEANS NO!!!”

Um. I say that, not to make light of the betrayal of the human compact that is rape. I use that example for three reasons: first, it’s like when a lover keeps trying to pleasure you to the point that sensory overload makes it painful. So, in that sense, it’s like calling “no safeword stop” all in a rush. And second, this is my own dearly beloved body doing this to me – if it continues, it will feel like a massive betrayal, because I laid down the red line of “no means no.” Everyone knows, next step is the cops. Except, you can’t call the cops on your body, and you can’t even call the docs on your body, unless your pain is medication-controllable, with the drugs permitted to treat it. Okay, and to conclude, the reason I used “no means no” is that the person (i.e. me) is so out-of-it they’re calling out everything they know to stop the act/scene. If they wound a sensitive partner with “no means no” they can assure the partner that it was reflex; and if they anger an asshole, they can say “don’t touch me again,” and there’s no need to change emotional intensity.

Disability Aside: A partner must endeavor not to say things that will be overly hurtful, but, if one’s mind is broken, so, too is the filter. The things on one’s “don’t say” list tend to spill out first. It’s the riddle/paradox “don’t think of an elephant.” With good filters, you can meditate on a cheeseburger, and not think of an elephant, but with broken filters, you think of an elephant instantly. And if your think/speak filter is broken, you may well say “elephantelephantelephant.” So, I try not to say “no means no” if a partner simply overpleasures me; but if I try too hard, I’m that much more likely to say it. When I fail, I beg forgiveness, and ask to invoke the rule “may my mind-blowing pain please override your hurt feelings? I know it’s not always possible, because for some, those words, from someone this close, is intolerable, even if accidental.” (My rules have been criticized for being too wordy, for some reason.)

So, rounding back to the subject matter, already in progress: I feel ill-at-ease, and you might think “it can’t be that bad,” but, just as pleasure can be horrifyingly, emotionally betrayingly, bad feeling, so, too, can the “ill-at-ease” feeling. Sometimes, I feel like I’m a tourist, like I’m in the movie “Being John Palmer,” because my body’s demands that I shift this, or that, is so strong. Most of the time, though, I don’t feel anything but the overwhelming sensation that I call “unwinding.” Seriously: my quality of life is modestly negative.

Before I move on, I need to explain “bindings.” As nearly as I can tell, there are correlated bindings, and maybe, singular bindings. It’s possible they’re the same sort of thing, but, restricted to one body part/location. A correlated binding  needs to be broken by apply some pressure at each end of it. If I have a correlated binding between one wrist, and the same elbow, I might need to hold my elbow steady, and manipulate my wrist, to get a satisfying “click” of release, and relief. Can I have a singular binding, just in the wrist? Sure, but, you see what I’m saying? The only reason a binding is “correlated,” is, there’s two body parts, so, maybe all bindings are the same, but some are very small.

My normal horrors continue when a new bloc of unwinding happens because a binding in the fascia is broken. Along with the painèrelief that comes with breaking a binding, I feel something else. Sometimes, it’s barely a pulsing in the muscles, of joints moving closer to neutral alignment. Other times, it’s an immediate sense that I want to peel apart yucky-sticky stuff; as a bonus, sometimes it feels, if I don’t unwind quickly enough, I’ll get a terrible cramp. Oftentimes, it does feel close-enough like a string, to me, but it is the fascia, which is a sheet under your skin so, one side is on your chest, the other side is  on your back, they’re connected through your belly and shoulders and neck and TMJ… you see? From the tips of digits, to the crown of the head, you have a fascia, and it can be tangled up like a pair of badly fitting knit thermals that got wet, and badly tangled, and now you’re having trouble walking. Trust me on this! But yours is probably fine. Probably. (Good thing I don’t sell quack cures here, eh?)

Looping back again: first, you break a binding, usually a binding that’s at the core of two icky-sticky sensations. Having done that, you’re guaranteed a bit more unwinding. Still, remember: eventually, unwinding resolves to a “shake out your elbow/wrist/shoulder, and feel naught but a straight arm, and pain relief.” For normal people. And for me, maybe, someday. Right now, breaking a binding may trigger symptoms of a focal seizure, but, at the least, will make my brain feel noisy, and foggy… which is also a symptom of a focal seizure. I seem to have very slow seizure capability. I need to talk to my doctor, and some researchers about that.

Moving on: because of the fascia, unwinding happens naturally, sometimes; I assume that the body just unwinds when you’re not busy using the body for other things, but, for most people, the amount of unwinding they ever need is small. For me, the unwinding can take hours, often, all of my waking hours. You can put pressure on unwinding; I can’t help but have the feeling that it helps me get back to neutral alignments sooner, but I don’t really have proof, just a desperate hope that I’m healing my body, and not just senselessly causing myself more misery.

Because unwinding is immiserating. At its baseline, unwinding doesn’t feel bad; my inner 6-year-old loves the Silly Putty™ quality of unwinding, and thinks it feels neat. It’s just, no matter what else, it feels as if it’s taking up mental bandwidth. In my case, it feels literally like that, because enough unwinding pain will cause temporary aphasia. Bandwidth is a transmit-receive term, “here’s where your communications can go,” so, when I have more pain, I have lowered communications, just like there was noise in a transmit-receive situation. E.g., I’m writing this in between batches of aphasia caused by my pain.

Why is unwinding noisy in my brain? I think it’s noisy because  the fascia and the brain have to coordinate how to move, because a bit more range-of-motion has been restored; my homunculus must be rebuilt.

Fun fact:if there’s too much unwinding pain, I’ll scream. Unwinding pain doesn’t need to make me scream to be bad. When I stand up, I experience more pain, and, my emotional state, and my cognitive abilities, both take dives. I believe unwinding pain can also trigger bad memories, in a manner precisely like PTSD flashbacks are described.

Unwinding pain also causes despair, both directly, and indirectly. I mean, I have to fight depression, because the pain keeps making me feel the emotion of despair, and I have to remind myself, it’s just the pain talking, okay? And then, on top of that, I have to remember that there’s no guarantee I’ll ever get better. At all. That’s despair inducing. “You’ll writhe in pain, to the point that you can’t do much of anything you want, but you’ll have bright moments, e.g., on rare occasions, you may have an orgasm, or a good meal, and of course, there’s always those moments when you break a binding, and you feel intense relief!” That’s a surprisingly small amount to live for.

Because unwinding pain can make me vocalize, I realize some folks could think they are “hearing voices.” I know how to handle unwanted thoughts or “voices” in my head, but not everyone is so fortunate to know when to ignore them, and when to use them only for rough guidance, not actual inspiration… and, when those voices are the true voice of the essence of John Palmer.

Earlier, I mentioned unwinding pain can mimic seizures. It’s true; I’ve had fish-floppy moments that could trivially have been diagnosed as a seizure, but which I can interrupt. I now know more about  this: it’s caused by spasms in my hips that cut off venous blood flow. My heart doesn’t get enough return from veins, so my body panics, as my cranial blood pressure drops.

One should not be able to interrupt a full fish-floppy seizure, not normally, but, as I said, maybe my unwinding merely mimics seizure activity. How would I know, I’m not an MD or DO! But focal seizures’ symptoms are very much like what I experience, and, I’m stunned to note both emotional responses, and muscle twitches being potential focal seizure symptoms/auras.

The most important thing, of course, is unwinding pain saps my bandwidth, and thereby takes away an essential part of John Palmer, leaving only a semi-human pod person who desperately wants to become “a real boy” someday. Sometimes, I can cover for the lack, though it increases spoon-spendage (“imagine all you could do in a day was measured by how many spoons are in your hand, okay? But you don’t have sufficiently many spoons to live a normal life…”). Sometimes, I can pull out all the stops, and cover for the lack, but, I won’t be aware of my limits… when I pull out all the stops, I’m ignoring all of my pains, so I’d better make this “one and done,” because I might be too exhausted, later, to finish up.

Speaking of “one and done,” I think this is a good start for discussions of unwinding.

Hey, folks. I’m working on a re-introduction post. I’m changing the nature of my journal from a person journal to an exploration of my disability, and what it means to live the way I do.

Here’s the thing: part of me is furious about my past life. I feel like a 1960s woman who has just met Gloria Steinem, who asked “but why does the pot roast need to be just like his moms, every single Sunday? Why can’t you make it your way, just once in a while?” and opened that woman’s eyes into marriage as an equal partnership. Maybe her hubby was really a decent, woke, fellow, but insisted on his pot roast his way, and never even thought about his wife’s preferences, but… if so, now, he’ll have a chance to show it, and realize that wow, he really didn’t think about her feelings *at all* sometimes!

You see what I mean? She has to have that bit of fury that he never thought about her feelings, so he realizes that, not only was he a lunkhead, but being a lunkhead hurt his partner. And there doesn’t have to be confession and reconciliation, necessarily, but, there needs to be that “damn right you should have asked me about how I like my pot roast!” component.

Due to my injuries, I am, for all intents and purposes, brain damaged. My neurological pain causes – get this – slow motion, interruptible, focal seizures that are externally controllable to an extent. Now, that’s me talking, okay, that’s not some MD told me that. But I learned the secret I’d been missing.

All my life, I thought a seizure disorder was something that was brain-internal. Even when I saw Emergency Department medical shows, with seizure control needed, I didn’t quite make the connection: sometimes, the brain seizes, because of uncontrolled input from the body. But I can control many of my “inputs”. I have a lot of pains I can cause in myself, and I can observe their effects.

So: my neuro pain is, in fact, one of the great causes of grief in my body. Neuro pain can cause all kinds of problems, from soi disant “psychological disorders” to neuro disorders. But there’s something else that I may have uncovered.

One cause of my neuro pain is, my body is twisted around itself. Well, that means I have pelvic muscle spasms that I happen to know, factually, can cause LOC, by cutting off the blood return from the lower half of my body. Well, sometimes, when I have a coughing spasm, I have blinks, in and out of consciousness. And sometimes, when I have muscle twitches, I have little bitty “blinks” of unconsciousness that no one would notice, unless they’d spent a lot of time in pre-syncope state, so they had a lot of experience there. You know, like me.

I think this combination of things is huge, because it’s two missed steps in medicine. No one really “gets” neuro pain, but, hey, I’m here now. I get it. No one would think that you could have a “blink” of LOC without missing a beat, but, hey, I’m here now.

What I’m saying is, my body can not only create a slow motion, interruptible, etc., focal seizure; if my muscles spasm, people would assume I’m in a full tonic-clonic (previously called “grand mal”) seizure, except, those ain’t never interruptible!

So, where’s the fury from? Well… I’ve been braindamaged, and treated as such. I’ve been confused, and treated as such. I’ve been weird, and treated as such. I’ve been in humongous boatloads of pain, and had to eat (excrement) to maintain abusive friendships because I was so desperately lonely, and so completely (I was told!) wrong.

And just like a 1960s woman, not all men. Not even the men around whom she feels a bit of fury, remember! The fury is just part of a feeling. Put simply, once I didn't see abuse, and now I do, and, like that 1960s woman, there are parts I need to shake off violently, especially those rapes I was supposed to ignore so as not to besmirch a "good man's" reputation.

Does that all make sense?

Listen, here’s my universal disclaimer: this is a disability site now, it might also be the occasional “fun John Palmer” site too, but, right now, this journal is a memory of some really horrible times in my life, so, this is about how one lives one’s life disabled.

When I’m spouting my own hypotheses, I’ll state that, but, I will make strong statements. “Neurological pain can be mistaken for Major Depression,” is a strong statement. “I’m not sure, but I believe neurological pain can be mistaken…” is a weaker statement. Weaker statements take too long, and they hide information that should be front and center. So there’s going to be some unsupported BS here. That’s a give.

DO NOT POST UNSUPPORTED BS THAT AIN’T MINE!!! (At least, not without a disclaimer.)

And, also, this is my place for unsupported BS, you can make your own DW if you need to speculate lots and lots. (I kid, of course, but, it’s always better when it’s your own place.)

If I post something I believe to be factual, generally speaking, you should trust it, but, my brain is broken. When my neuro pain hits me, I can mistake opposites (left for right, for example), or, remember a *dis*proven fact as a fact. When this is happening, by its nature, I’m too dulled by neuro pain to recognize it. CORRECT ME GENTLY, AND ONLY ONCE. There’s a saying I heard comes from Texas, in sports, “no one needs you to tell them they dropped the ball,” and that’s the principle here – if I posted something wrong, especially due to a malfunctioning brain, I don’t need someone to harp on it.

Rule for this space: I enforce kindness. But I must confess, I’m sometimes wrong, and unkind. Also, sometimes, I’m in a boatload of pain, and it’s excruciatingly hard to be kind. If I’m in that much pain, you feel like an enemy, and the only question is, whether I should strike back, or turtle up and run away. So essentially, I’m saying, “I’m an especially flawed human being, but, I discuss in good faith, and try to leave the world better for my passing; if you want to stick around, please be aware I don’t always live up to my ideals, but I always loop back to them, once the storm passes.