The Uncertainty Principle

Chronic health issues (there’s that ghastly word again—honest to goodness, why couldn’t they come up with a more cheerful-sounding one? I mean, a “chr” and an “ic” in one word? So harsh-sounding) are, obviously, very tricky things to deal with. Not merely, however, from a physical or medical standpoint. Sure, it is very hard to wobble around and fight for so many steps you take, and it is more than a little maddening to work so hard to get appointments with doctors, only to be stymied by either their own lack of experience with your bizarre problem, or the arbitrary insistence of the insurance of the Land of the Free and the Home of the Brave that you’ve had enough care for the time being. But, the thing is, I’m pretty sure a lot of people have talked and are talking about that, and I can’t help but feel it doesn’t need to be reiterated. What I am surprised I’ve never seen people talk about is the psychological toll of chronic problems. Specifically, the uncertainty that comes along with them, and really any health condition that they had to invent a special word for (CHRONIC) just to explain they don’t really know what it is.

The reason I went for most of my life without ever really discussing my health on the internet in detail (until the advent of this blog, obviously), aside from my own unending fear of complaining and general personal baggage, was that it was kind of impossible to stay on top of what was happening with it. If I’m perfectly honest, it kind of still is. You may notice I haven’t blogged since last October. There is so much uncertainty and volatility that is inherent to chronic health problems—or at least my chronic health problems—and it leaves me in a rather awkward place when trying to talk about them, or even process them internally. For example, last time I blogged, I was having seizures, was 90% sure I had epilepsy, and was resigned to having it for the rest of my life. I don’t care who you are, that’s not an easy thing to come to grips with, but nonetheless I like to think I had my head wrapped around the idea to some degree. While I may have ranted and raved somewhat on this corner of the internet, deep down inside I was ready to live with it. Rolling with the punches and all that. It sucked, as I was the first to admit, but I’d managed to process it enough to feel like I could deal with it.

A few weeks later, though, lo and behold, I didn’t have epilepsy. I was technically having seizures, which was why I’d flailed all over the table in the test that classically determines if you have epilepsy, but they were actually being caused by the meds I was on. Obviously, that was good news (“I don’t have epilepsy, yaaaay!”). The thing is, even though it was good news, it was a huge shift in the world as I knew it. I went from, “I’m having horrific seizures that throw me all over the place, and I’ll realistically have to deal with them for the rest of my life,” to, “Oh, I’m just having another inexplicable 1-in-1,000 reaction to my meds. I’m actually going to be fine.” Even if it was relieving, it was also terribly disorienting insofar as trying to process this huge, harum-scarum thing we call Life.

And that’s the thing with chronic—or at least volatile—health that I feel isn’t talked about enough: The sheer uncertainty of it. It’s hard enough to resign yourself to having some bizarre, horrible problem that’s popped out of the blue and is having a field day with your life, without having to then completely reevaluate everything a few weeks later when it turns out that problem doesn’t exist (at least anymore, or possibly ever, who knows, the doctors are just as clueless as you).

A very common issue people with chronic health struggle with (at least as far as I’ve seen) is self-doubt. When you have mysterious, whacked-out health problems no one really understands, let alone has a name for, you can’t help but wonder if it’s all in your head (especially since plenty of especially incompetent doctors will actually tell you that directly), or you’re somehow subconsciously making it up or some pseudo-psychological paranoid drivel like that. Even if people never suggest it, you still end up worrying about it, or feeling like people are implying that you could be a whole lot better if you “only put your mind to it” (just to be perfectly clear, no one actually wants to be chronically ill; no one is going to pretend they are or exaggerate their problems simply because they want “attention.” I’m sorry, that’s just stupid. Having agonizing, weirdo problems isn’t some kind of pastime or something, and whatever “attention” it may bring is usually more humiliating than anything else. If I could magically be healthy just by taking deep breaths or achieving some attitude of magic-unicorn-pixie-dust-positivity, then I’d do that. Rest assured, no one in their right mind would deal with traditional doctors or the American medical system unless they desperately wanted to be healthy).

This self-doubt problem, which is probably best displayed in that overlong parenthetical rant I just delved off into, would honestly probably be hard enough to cope with mentally even if I just had one problem that never changed. Obviously, though, as I was just talking about, I have loads of problems, and they’re constantly changing, evolving, re-emerging, and inexplicably vanishing or lessening without much ceremony. To go from “Recovering” to “Freakishly Epileptic” to “I Guess Recovering Again” in a space of weeks is incredibly hard to process on its own, but it becomes even worse when you’re constantly grappling with self-doubt as a result of your mysterious health being so mysteriously volatile.

And this is, again, why I traditionally never talked about my health online, or at least one of the primary reasons. I made a blog post all about how much having seizures sucked, and then a few weeks later the seizures were gone and it was chronic business as usual. Trying to deal with that personally is hard enough, but trying to keep people updated on it is even harder, especially if any of those people happen to have sympathies for the “It’s All In Your Head” school of psychosis. Even if nobody ever comes out and says, “So, you had epilepsy for two weeks, and now you just magically don’t? Surrrreee…” in those words, or even any words at all, being the insecure man that I am, I will be unable to shake the idea that people are thinking exactly that. Even if it’s totally irrational (let’s be honest, pretty much all worry is totally irrational, because it achieves diddly and lessens your chances of achieving squat), I’ll still worry about it. It’s part of the big, ugly, confusing package that is chronic health, I guess.

As an addendum, I would like to say that prescription medication sucks heck, because the seizures were all totally its fault (though nobody warned me the particular med could cause seizures, and apparently it has such a minuscule, vague chance of causing them that I get to feel uncertain and self-doubtful about it anyway). Oh, and my hair stopped falling out ages ago, so it was apparently a random fluke (maybe caused by the stupid amount of stress I have to deal with because of all this?).

The good news is that I’m no longer medicated (FINALLY!) and that’s helped a lot. By all accounts, I was having super intense reactions to my meds (even though one was “as old as dirt” and allegedly harmless—that was the one that gave me seizures—and the other was just some stupidly simple asthma drug. That asthma drug, by the way, was evil incarnate, and caused stuff I still haven’t had the guts to talk about online yet).


Breaking Down (the Beat)

So, turns out I have seizures. It really sucks.

Let’s be honest, I could end this post here, but that’s hardly satisfactory venting. The whole point of this blog is to get stuff out of my system, even if it’s going to be stuck there for the foreseeable future. And maybe get myself to laugh at my problems rather than wallow in them (hence the name of the blog). I know that’s sort of a weird coping mechanism, but it’s the only one I’ve got that actually halfway works, so I’m sticking with it (as I go back to edit this, I think I achieved more wallowing than laughing this time around, but whatever, it’s my blog and I can be hypocritical whenever I like).

As you might’ve guessed by the name of this blog, I’ve had uncontrollable muscular seizing for some time. However, we initially thought this was just leftover nerve damage from my tethered spinal cord. My twitching began shortly after they went in and snip-snipped my spinal tether, so, being a sane person who believes in logic, I connected the two. And, as far as I can tell, there is some connection. The low-key twitching and bizarre involuntary contortions my body gets up to (I’m practically a mobile one-man interpretive dance group, complete with “reaching for the sky” motions and what might qualify as chicken dancing) are probably just nerve damage doing what nerve damage does. However, it turns out the really intense episodes of twitching which I was calling ‘nerve attacks,” for lack of a better word (Nerve Attack, incidentally, is the name I’ve proposed for my one-man interpretive dance band), are actually very likely just seizures. I had some very vague worries about the possibility of this—collapsing writhing to the floor hardly counts as just twitching—but I dismissed them as paranoia. I’m an incredibly paranoid person, which I think is understandable when a small birthmark on my lower back turned out to be a harbinger of being potentially crippled, so I try not to take too many of my misgivings too seriously (otherwise I’d be rushing to the ER every other day for a heart attack).

Lo and behold, though, when I went into my EEG two days ago, sleep-deprived as ordered and firmly believing the test would just being crossing out a remote possibility just to be on the safe side, they put me under a strobe light and my muscles immediately began breaking down a funky beat. The tech did a very good job (the guy doing the test, not the strobe light, though I guess it performed admirably, too, being very flashy), shutting off the light after only a very brief out of testing, but the whole ordeal left my nerves fried as heck. I’ve since been breaking down in other ways, spending most of my time laying around unable to do much of anything aside from try not to have yet another seizure.

I’ll be honest, seizures feel like one life-crippling diagnosis too many; though, admittedly, I may not actually get diagnosed, because my data’s all going to the brilliant neurologist who watched me collapse repeatedly and told me I was perfectly normal. She also didn’t catch me any of the three times I fell, because, naturally, when a sickly sixteen-year-old collapses face first onto the metal side of a mile-hile hospital bed inches away from you, you don’t try to catch him. I mean, why would you? You’re just a trained medical professional with arms.

Phew, quite a lot of sarcasm going on here. You can tell I might be a little frustrated right now.

In retrospect, I really should’ve seriously suspected I had seizures earlier. Once again, I had my suspicions, but I wasn’t actually bothering to take them very seriously. But, I mean, I had a seizure-like episode once while watching the (very flashy) Big Bang Theory theme song in a highly fatigued state. It’s so easy to pin everything on nerve damage, though, and arguably more comforting to do so. I mean, I’m on medication for nerve damage, and we have ways and means of making nerve damage calm down. Seizures… That’s a whole new wild frontier, there. And, honestly, with my catastrophic brain fog, drowsiness-inducing nerve medication, and rampant tunnel vision, I’d really rather not take any brain-slowing seizure meds. It’s seizure meds that slow your brain down, right? I think so.

But what can you do? Just gotta keep pinning your hopes on tomorrow. I’ll feel better tomorrow, I’ll control my legs better tomorrow, I’ll have less seizures tomorrow, I’ll finally be well enough to do my vital physical therapy tomorrow… I’ll be honest, though, guys, my tomorrow keeps routinely sucking. Routinely Sucking Tomorrow, there’s another, especially bad band name right there.

That’s all I’ve got to say for now. I’ll admit, I’d be cooler with developments like these if I was an apathetic person who didn’t especially want to do anything with my life, but I’ve got a story in the works, a YouTube channel to run, an online roleplay to build someday, and an online episodic sci-fi serial to write. Still, there’s always tomorrow, right?

Educated Stupidity and The System

It’s time to talk about doctors.

Yes, you knew it was coming. We all knew it was coming. Any blog about health or illness, especially chronic illness (the C-word’s coming out early, folks, hang onto your hats), is bound to talk about doctors sooner or later. It’s inevitable. If you’re sick for any substantial period (as in ill, not perverted), you’re going to go to a doctor, because that’s supposed to help. And, naturally, if you are sick for a substantial period, that means it obviously didn’t.

It is very difficult to talk about doctors, because most of them are so dang incompetent, and it’s incredibly difficult not to just devolve into ranting against them and the System in general (you have to capitalize the word System when you’re talking about the Healthcare System. I’m sure you can feel, if not exactly understand, why). I try my hardest to be a vaguely polite, nice sort of guy, and while I fail fairly regularly, I like to think I’m not some kind of flaming loudmouth spray-painting threats on overpasses. Admittedly, I can’t use spray paint because of my asthma, and I’m just as likely to up and fly as to climb something with this spine of mine, but still. I like to think I’m not a person who runs around railing against the universe in general. Of course, I can’t really run, exactly… I think my metaphors are breaking down.

The point is, I try to talk (or write, rather) like a reasonable and educated being, and maintaining that while talking about doctors is difficult. When you’ve collapsed three times in a row in front of a highly trained specialist (who didn’t try to catch you, even when you fell down right next to her) and been pronounced “perfectly normal,” you naturally feel tempted to lynch the whole race of doctors in general. Well, perhaps not the whole race. I have known some good doctors. Well, no, actually, he’s dead. He was crushed by a tree branch, because the world can’t have nice things. I know at least one reasonably decent doctor who’s alive, though. All the rest, though, well… I mean, sometimes they do their jobs. On good days.

I’m not here to evaluate the quality of doctors, though. Alright, well, maybe I am, but not quite in that way. I’m here to talk about why doctors suck. No, wait, actually, that sounds way too overpass-painter-y. Can you really call a graffiti-painter a painter? Wouldn’t that be more of a grafittiman? Or is that sexist? Grafittier? Wouldn’t that describe something more grafittied? Oh dear.

I digress.

I’m here to talk about what’s flawed with the System and with doctors and so forth, partly in the hopes of bringing some awareness and therefore improvement, but mostly for the sake of ranting and in accordance with the Law of Emotional Discharges (for every emotionless action there must an equal and opposite emotional action, or at the very least a wicked buildup of bad feelings, which inevitably result in an opposite emotional action of a squared magnitude).

A big problem with doctors is that they’re made out to be infallible. If the doctor says you’re sick, you’re sick, and if the doctor says you’re healthy, you’re healthy. There’s no other way about it. God knows the patient would never know if they’re sick. That would just be crazy. I mean, there would have to be some sort of symptoms experienced by the patient to clue them in to their sickness. And we all know the only symptoms that exist are the ones the doctors decide you have.

In all seriousness, the way the System is set up is completely skewed, even down to how doctors are educated. In medical school, students are taught to differentiate between the information provided by the patient, and the information observed by the doctor. And the information the doctor observes always takes precedent. Of course, he isn’t the one who’s sick, but somehow it’s all perfectly logical, because he’s a Professional.

Professionals are the gods of society. If scientists say it’s true, it must be true. If a doctor says it’s so, it must be so. There’s a reason we don’t call politicians Professionals; Professionals always tell the truth. Professionals can’t be wrong, because they were Educated, which means a load of ideas were pumped into their heads. Just like we’re Educated to think Professionals are always right.

And it’s stupid, really. It’s really, really stupid. It’s stupid to think that doctors are somehow repositories of all medical knowledge and wisdom, that doctors are somehow automatically authorities on their special subjects. Of course, that’s how they’re styled—they’re literally called Specialists—but it’s still stupid. We’re all people, we’re all humans, we’re all imperfect, and plenty of us are stupid and make mistakes. The problem with doctors, of course, is that they don’t acknowledge this. Doctors are styled to be right, and so they have to be right, and nothing in the world will get them to admit otherwise.

And this isn’t just a doctor problem. This is a problem with many Professionals (though especially doctors, insofar as I’ve seen). It’s a problem with Highly Educated Individuals. Education is merely the pumping of ideas into a person—it’s merely the forcing of a worldview on a mind. Those ideas might not be good ones, and that worldview might be flawed, but it doesn’t matter, because as soon as a person is Educated, they’re automatically Right. And the more someone is Educated, the more Right they become. Scientists know all about Science, because they’re Scientists, and no one is allowed to question that (which is ironic, since Science is literally the practice of asking questions).

And it’s not like this is all completely wrong. People are Educated so they can learn things, so they can know things, so, in a certain manner of speaking, they can be Right. But the trouble is, once people are Right, they can think they don’t need to learn anything anymore. They can become closeminded, entrenched in their own Educated ideas and ideals, and they can refuse to believe anyone else could possibly know better than them. In other words, they can become stupid. All it takes to be stupid is to believe you don’t need to learn and thus, naturally, always know best. Being Educated can easily mean being a stupid loudmouth.

And this can apply to doctors. Doctors are highly Educated people, many of whom probably should’ve been scientists but instead wanted to actually make money. I went to a geneticist that literally refused to test for any of the potential diseases my other doctors were concerned about (no doctors ever trust each other—it’s a bit like Game of Thrones, at least as far as I can guess, never having seen the show), instead wanting to do tests to contribute to research on Autism. I wasn’t going to the doctor for my Autism—the idea seems absurd to me, just like going to the doctor for being neurotypical or liking carrot cake—but he still wanted to do his research. He wasn’t concerned about actually giving me medical care; he actually wandered off after introducing himself and left his secretary to do all the actual medical work.

That’s the real trouble, at the end of the day: Doctors don’t listen. You hear medical Industry people talk endlessly about how they have doctors who “really listen” and “really care” and “have great bedside manner,” but the fact of the matter is that, if you’re actually bragging about the fact that you respect your patients like ordinary human beings, you probably don’t. It’s like that classical abusive person who won’t shut their mouth about how much they love whoever they’re abusing. And the reason why doctors don’t respect their patients and don’t listen to them is that doctors are Educated Professionals. Doctors are, for the most part, so darn Educated their minds are completely closed; they know everything, so they don’t need to learn anything, so they’re always Right, so they don’t need to listen to whoever’s sitting in front of them.

And it’s not like it’s entirely their fault. This mentality is Educated into them, and reinforced by the System. I mean, simply speaking, the whole System is set up for hypochondriacs—a bizarre state of affairs, since they are a very small minority. I was at the hospital the other day and I overheard a young family being denied the feeding tube food their wheelchair-bound son needed because the tearful receptionist couldn’t do anything to get around the bureaucracy. The System isn’t set up so people can get what they need—it’s set up so as little as possible is lost to as few people as excusable. Because the medical Industry is an Industry, and therefore a business, it runs by the old business creed: Maximum profits, minimize expenses. And, to minimize expenses, you have to minimize treatment. What’s the best way to do that? Educate your doctors so that they distrust all their patients’ symptoms.

I’ve said a lot of less-than-nice things about doctors throughout this post, and I do want to apologize if I’ve slung any mud or painted any overpasses. That wasn’t the intention. It’s not like doctors are the only victims of Educated Stupidity. It’s everywhere where Professionals are found, and we’re all effected by it, even subconsciously. Naturally, I’m not saying all Educated people are stupid, I’m just saying Educated Stupidity is a phenomenon, and we should be wary of it. This whole thing was supposed to be more of a sensible criticism of it, doctors, and the borderline malevolent System. Ultimately, I think it was just a long rant about education and stupidity and so forth, but hopefully it wasn’t completely unbearable.

The “How are you?” Conundrum

Sometimes, the problem with people is not that they don’t take an interest, but that they do. Or, more properly, they pretend to take an interest so they can get through some social formalities and actually talk about what they wanna talk about without feeling self-centered. Very few people just cut to the chase and say what they want to say straight out, whether out of shyness (as in my case) or just out of societal practice. I don’t pretend to know why this is, but ultimately people like to start a conversation before they actually get to one.

One of the ways people do this (aside from talking about the weather, which is just stupid, because literally no one gives a care about the weather—not even weathermen) is to ask an interested question like, “How are you?” If they wanna be casual, they’ll say, “How’ve you been?” or, if they really do care (which can be worse) they’ll say, “How’re you feeling?”

The trouble with this question is that people don’t want an answer. Not a real one. They want the response dictated by social norms. Y’know, something like, “Pretty good,” or “Oh, fine.” At most, they’ll put up with a response that can be summarized by the phrase, “My job sucks.” They don’t want to actually be told how you’re feeling. Not if you’re feeling bad.

And that’s the trouble with being more or less permanently ill—you’re always feeling bad. You can’t answer the question honestly. If someone asks me, “So, how’ve you been?” I can’t say, “Well, my hair’s falling out.” After all, what are people supposed to say to that? The whole purpose of the “How are you?” protocol is to start a conversation, not totally kill one.

On a side note, yeah, my hair’s falling out. It sucks (you might even say it’s the last straw, heheh… I’m gonna go cry in a corner). I’m hoping it’ll just stop, which I think is probably Stage Two of New Symptom Discovery. No, wait, Stage Three. Stage One is Self-Doubt (“It’s probably just me…”) Stag Two is Confirmation (“Yeah, honey, it’s definitely getting thinner on top,”) and Stage Three is Terminal Optimism (“Maybe if I just ignore it it’ll stop…”).

Returning to the “How are you?” Conundrum.

As I said, it can be quite awkward when people ask how I am just to get a conversation going, but as I stated at the beginning, it can be even worse if they actually care. Because then you’re legitimately breaking bad news to them, and that can be even more awkward. “So, dear, how’ve you been?”—”Mostly bedridden.” I mean, come on, what kind of a conversation is that? That just brings everybody down.

My first go-to answer to this conundrum of a conversational starter was “I’m alright.” It’s nice and noncommittal, and in modern conversational English “alright” basically means “mediocre.” But recently I’ve been feeling anything but alright. I mean, 90% of the time I can’t remember who I am (I still need to write a blog post about memory problems—keep forgetting to do that). That’s hardly alright. So now I’ve come up with “Been better, been worse.” It’s usually true (I’m not crippled from a tethered spine anymore, for instance), and it sounds nice and cowboyish. On a side note, isn’t it weird that sounding like you don’t care about your own problems is somehow cool? If you think about it, not being fazed by serious problems is basically being out of touch with reality. It brings to mind that Mystery Science Theatre 3000 quote, “How do you deal with a man that sarcastic? It’s like he’s afraid to feel anything real.”

Anyway, I suppose that about wraps that up. In case you’re wondering, I’m not fine. I’ve been far better, though I have been worse.

Heck With It, I’m Doing This

Nobody wants to be a whiner. Absolutely nobody.  When you ask a little kid what he wants to be when he grows up—assuming you’re one of those annoying people that do that—he’ll never say, “I wanna be a whiner!” Or she, for that matter. Gender hasn’t really got anything to do with it, but there’s no gender-neutral pronoun except “it”, and that just sounds objectifying. I suppose you could say “they”, but that’s still technically not grammatical. Not that I’ve ever had much truck with grammar as a doctrine.

Regardless, to reiterate: Nobody wants to be a whiner. Nobody wants to run around complaining about all their problems to everyone and never being taken seriously because all they ever do is run around and complain about their problems. Whether we realize it or not, the majority of people just want to be liked (or loved, if you want to get a little deeper), and whiners are not likable.

The trouble is, I am a whiner. I really am. Or at least, I was when I was younger—I’m trying not to be now. Growing up and all that junk. For most of my life, though, I’ve complained about various problems and pains I’ve had. And there’s a very simple explanation for this: I’m sick. Chronically sick, in fact; which is a scary, fancy doctor-word for constantly (and, among ordinary people, apparently code for “not really”). I’m the kind of sick where, if I don’t scare someone in the pew behind us at church, I consider it a good day. I’ve got enough diagnosises (diagnosi? Once again—grammar’s really more of a nice idea than a reliable tool) and suspected problems I could probably write a song with all the fancy words. Just to hit the current high points, I have (drum roll) tethered spinal cord syndrome, asthma, scoliosis, potential Ehlers-Danlos Syndrome, low white blood cell count, and lots of symptoms that explode when it all collides. Not to mention side effects from medication. Medication, that fickle blessing that gives with one hand and destroys with another. It’s like some kind of Greek god or something: It’s awful, but you can’t live without it.

Told you I was a whiner, didn’t I?

And that’s the trouble—when you’ve got so many problems it’s easier to name the parts of your body that still work (for example, I have fantastic hair), you end up complaining a lot. And when you don’t get diagnosed with much of anything useful till you’re fifteen, people naturally don’t really take your complaining seriously. And then, after you’re diagnosed, people still don’t really take you seriously, because reasons. Again, whiners aren’t taken seriously as a rule, even if they have plenty of stuff to whine about.

As a result of all this, I’ve always tried to keep my mouth shut wherever possible (with arguably little success, admittedly). Sure, in real life (or “IRL” as all the cool kids say) I can’t help twitching uncontrollably (hence the title of the blog), but on the internet I don’t have to twitch. Thus, I’ve always tried to keep any mentions of my health on the internet as curt and prayer-request oriented as possible. No need to bring people down, right? I can be whoever I wanna be on the internet… Right?

Turns out, no, not really, not without bottling yourself up and feeling like you’re gonna go crazy.

So, as of today, I’m done, I’m tearing off the veil (which was full of whiny holes anyway, and probably only existed in my head), and I’m gonna start talking about my health on the internet. Really, honestly talking. I’m done with feeling ashamed of things I can’t fix, and of the poorly-repressed complaining that probably would’ve spared me a lot of heck if any of the doctors had cared to listen. Is doing this scary? Absolutely. Am I going to keep the complaining exclusive to this special blog so I don’t bother people? Well, yeah. But am I doing it? Yes! Am I excited? No, I feel like I’m gonna throw up.

But I’m doing it, no backsies, and maybe I won’t regret it horribly tomorrow.

And, who knows, maybe this will resonate with other sick people or something. Somehow. Some way.

… Right?