Acupuncture: cheaper and less messy than suicide. Also less permanent – so it is something I’m going to be doing more of.
I have a neurological illness, it’s manifesting in ways that make life challenging to sometimes impossible to pursue in a very active way…if by “very active” I mean walking, standing or sitting up. But I tolerate a lot and put in the hours of wobble (Ataxia, they call it) and you’ll see me hobbling and wobbling around still.
Then again, it’s not the wobble but the crippling nausea that blackens too many waking moments in a blanket of dark noise like an air-raid siren. And nothing touches it but not moving for hours, because nothing really addresses the nervous system without suppressing so many other functions. So, acupuncture. It seems specifically geared, machined and invented for this purpose – to reach into the electromagnetic wet wiring of being and release some lightning into my exosphere, where it can do me no harm. Whatever magic it can do, I’m grateful.
In this blackness, a giant pencil eraser crushing my skull from above and eradicating all possibilities of a future, till the moments it abates, you might imagine I’ve been pressed against thoughts of the inevitable. That is – well. It is among those things that we don’t like to talk about in America — which means it’s one of the most important things in the world. The other being sex. And this one being – yes….
I have so many thoughts of life and death now…and thoughts of death being not permitted in our histrionic, immature, brain-dead, thoughtless, mindless, supremely boring and childish, anti-human culture (did you get all of that? I’m talking about America. Yes, this shit zone of a mind and soul rape culture that turns everything that is into plastic radiation bent on entertaining your broken soul for 1/1000th of a second – till you need another fix…and no, I wouldn’t rather live in a Muslim country – are you fucking kidding me? No. No, it’s the whole human species that makes us what we are – I’m just American so have to see it through this lens. Okay? Fine. Back to..where were we?? Oh right. Death.)
Thoughts of this unspeakable thing that happens to all of us (at least once) are something I’ve had to fight with myself (a little) and friends (more than a little) to make heard. But it is to thoughts of death that the mind turns when it can turn nowhere else. It is then a thought, a stream of thoughts I’ve been having for some portion of the 2+ months I’ve had this illness.
And if I’m writing (and I hope and hope to be, and would plan but planning is less predictable), then I’ll talk more about that soon, next and as long as I can. Because it’s a shame that we aren’t more honest about — well — everything. (Did I mention America? Sex-shaming, death-shunning, plastic-surgery for teenaged media whore culture? Fucking hell.)
So, more on that soon. But now, a change of topic to catch up the newcomer who may be asking the question:
“But what illness? What happened? And could it happen to me!??” (This last bit is what people are always asking when they ask about a terrible thing. We want to inure ourselves against horrible accident or escapade, so hope to learn from our fallen – or falling – brothers and sisters. Fair enough, it’s a reasonable and logical survival mechanism.)
So, to answer: The illness is something like M.S., or a variant. Neurological illnesses are like mercury (and no, I didn’t have mercury put it or taken out) and apparently hard to hold on the end of a pin – which makes it a difficult thing to not only diagnose – but to manage – because its nature is squirrely. Some people decline and fall in weeks or months; some in years, some in decades. It depends. (On what? Nobody knows. Maybe diet. Maybe not. Maybe the loom of the Fates spinning before we were born. Maybe your stars. Maybe your childhood. Maybe, baby… all you can do is live your thing out and see.)
It came on a couple months ago, following three months of heinous dental trauma. (No, no mercury involved, not taken out, not put in – that’s twice. But everyone in the natural health community, when perplexed says: It must be metals!! As though no one ever got sick in the world before the use of metals in dentistry. I know it’s destroyed lives – but what the natural health community fails to understand is exactly how full of shit its prognostications sometimes are. Sometimes things just suck. Sometimes you just ride it out, pray for life, do your best, pray for death, have sex when you can, eat as well as you can, love with all your heart, and, as ABBA tells us, wait for the roll of dice from Olympus on high. But more on things to love and hate – or at least ignore – about the natural health community coming soon…)
The symptoms are those that travel with, well, M.S., or CIDP, or ALS (which is the nastiest one, sure to kill you soon-ish. But then again, it’s a bit of a crapshoot, and the lines get blurred.)
And then again, again, my symptoms don’t align with any one of these entirely, and they are, well, “weird.” And here I’m quoting the truly good and kind-natured doctor I’m currently seeing for the problem (it’s informal – an open relationship. He’s even willing to recommend me to other specialists – how open-minded!) But from stem to stern, textbook to practice, what gets called M.S. is a “catch-all” for a lot of “weird” fucking shit symptoms.
Indeed, all of the neuro-fucktatious nightmares you can be visited with are “weird.” They are because – as a great mafia Don once said: “Nobody knows nothin.” And that’s about how it is with neurology.
Eventually, maybe soonish, they’ll do some muscle tests on me, see what responds and what doesn’t: “Can’t walk heel to toe: check. But can balance on one foot: check. Nauseous as a Christmas goose on a spit: check. Diagnosis: Weird. Schedule more tests. Here’s some Xanax. Do you have cable? Netflix? Starz on demand?”
That is, they don’t rush to diagnose these things. This makes being sick (that is, living with or dying from a mystery neuro-fuctation) different than living with or dying from media-friendly, brand-name, big-box-store “virus” like the big “H’s” or the variety of modern ailments called the “Big C.”
And unlike the big money “viral” syndromes that they sell million dollar drugs (to not cure), a neurological/neuromuscular illness is a real thing. It’s not just a bad test result stuck on you like a full-back tattoo of a Pokemon monster you wake to find is burnt into your back after three-night bender on that on-a-whim trip you took to Bangkok. No permanent-ink tags here. This is some real and ugly shit, and even the experts hesitate to ink you with a label – because they’re just not sure and can offer you little to fugly nothing.
Neurological illnesses aren’t so brandable. There are no big successful drugs. There is no moral recrimination. There is no “safe sex” component to sell the brain-and-soul-damaged, shame-ridden, Jesus-loving, gay-hating, bi-hating, self-hating American public on.
This stuff happens, and nobody knows why — and they don’t even like to guess. Which tells you something about reality versus fantasy in medicine.
I repeat: Not only do they not rush you to be diagnosed – they will fairly easily admit that they don’t understand what causes any of this stuff. Sure, they postulate a bit of biological potentiality here and there, but they aren’t married to this pile of “perhaps,” and they are reluctant to tell you that they absolutely know the course of your problem.
Now, compare this with many cancers, or the big-brand “H” so-called viral illness. They’ll tell you – based on junk science non-specific lab tests, that they know, within a realm of high Bayesian probability, that you are most definitely-probably-maybe infected with something that they are SURE is going to kill you soon-ish (maybe probably…there are outliers, we’re still doing research, send cash) BUT! You MUST take these pills and tell all your Aunties and Uncles that once you sat on a toilet seat in a Greyhound station and that’s how you got… “it.”
What “it?” You know, the test result they’re not sure of. And once labeled, whatever illness it is (or illnesses – and it’s always plural) that you actually have no longer matter – because they’re going to treat you like Anna Karenina (or Madame Bovary, or Hester Prynne) and excise you from polite society by means of a scarlet letter (the big “H’s” – they’ve got three or four of them now) so that you can “bravely” and “boldly” and “proudly” (guffaw) tell your friends and neighbors that you’re “living with.”
So that my friends and acquaintances, who are mislabeled with one of the “H’s” don’t get to live – or die – in peace. They are managed by the state: isolated, humiliated, intubated, drugged, sprayed and neutered – before they can get so much as a leg waxing (or dental cleaning). All because of shitty lab tests and Puritanical, religious-based, cultish fake fraudulent and sex-shame-disease-minded diagnoses.
Have I lost you? Let’s rewind:
Me, myself and I, have an actual goddamned fucking shit of a neurological problem, in the ballpark of an M.S. or something like it…
And there’s the trick: they don’t rush to judge me or it. They let it be. Wait and see if I improve or deteriorate.
They let me do acupuncture, take essential fatty acids, antioxidants – and rest. They even let me (in California, if I have a card) medicate the spasms with variants of hemp plants.
Furthermore, I’m able to mix with polite society. I don’t have to confess an invented past of behavior that ‘earned’ me my illness. I’m simply an unlucky S.O.B. and everyone cries and smiles and hugs and wishes me luck. I don’t have to move into the “neuro Ghetto,” or date (if I had that kind of energy) only other similarly “infected” people. In fact, I’m able to consider my matters of life and death as though I had a right to govern my own path.
I’m allowed to swim in the unknown and try everything I can – and hobble around off-balance with a disease that does not show much on the outside, (at least for as long as I can compensate my walk and movements to hide the tilt and sway…)
On the other hand, I don’t get much of a guide rail – even when I really could use some help; some guidance, some words of authority to assure me I had a well-determined known path to walk down. Not even an absolutely false and deterministic lie that might help me put some of my suffering on a timeline.
And here’s the irony: Sometimes I could use a guide rail – but I don’t get one. Oh, there are the message boards for people with CIDP, M.S. and the suicide-inducing ALS pages. But you don’t want to spend too long reading those, because nothing is so consistent except at being inconsistent; the best-case scenarios don’t sound like me today, and the worst-case stories will have you phoning up the assisted suicide hotline and putting your affairs in order – which is a possibility in life, and one I allow to be considered. But then again – nothing is written so clearly except the day to day experience.
I can see why people sometimes lean into authority. They do it because they’re afraid. And I’ve most certainly been afraid, and I’ve most certainly considered death, and the reality that we don’t talk about in America…and I’ll write more about that. But back to the branding.
The fake viral plagues, the big “H’s,” are – like everything – multifactorial, toxicological, gut and organ related, historical, stress and formationally-induced – COMPLEX motherfucking illnesses. Like almost ALL illnesses are. There are no vaccines against the complexity of life. There are no pills that stop ancient wounds from manifesting as illness.
So, why don’t they tag-and-bag me and put me in the open-air internment camp of the fake “viral” plagues of our time? Because they haven’t blamed a virus for M.S. At least, not yet.
Maybe they’ll try to come up for one, but I suspect that if could’ve sold it, they would’ve already done so. The problem is, the nervous system doesn’t give much of a good goddamn about any of the biological assault drugs now forming the majority of the big cash items in the marketplace. You can’t assault your way out of a broken nervous system (but you can out of a fungal or bacterial infestation – at least until you lay waste to the mitochondria and gut lining, thereby killing the patient).
So, I’m living with it, and/or dying with it, and trying to manage it till .. well. Till such a time that it’s bettering or worsening and a decision is required – or life takes hold again and returns me to better functionality. I’m not deterministic. I hold a space open for what may be, what I don’t know, what I can’t know, and above all, what I can do with these moments – rather precious moments, now, they seem to be.
But I’m also not holding up a kind of false hope against the inevitable (and we must admit: sacred, profane, holy or indifferent) process of life – which must include death.
More thoughts on living and dying – and the swirling school of fish I’ve been meaning to jot down in ink for you, my friends, fans, and loyal readers – you .4 of 1% of the American and world public that never bought into the top-down systematic management of your soul and mind… you, happy and unhappy few. My tribe in the nether-regions, disguised in the city suburbs as consumers, but wielding secretly a rose in your heart, surrounded by thorns, dreaming to meet the soul of all things in time.
I’m writing daily, as I can, to push a book out of the play-doh machine, as I get better, or if I don’t. I have some thoughts on love, life, death and living that I’d like to share.
Wish me luck… and .. back atcha.
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