Living Falling Down

If you were to look at me, even if you looked closely, you would think I was fine. I’m not.

I have what’s called an invisible illness, a sneaky disorder in which the patient suffers from the overworn phrase “but you don’t look sick!” Occasionally there’s the variation of “you must be faking” or “it’s all in your head”, but the stigma is the same. Unless I’m having a particularly bad episode, I look, sound and act like any other perfectly healthy 20-something.

I attribute this assumption not only to the invisible nature of my disease, but the fact that I am a spledid actor. I made a conscious decision when I was diagnosed that I wasn’t going to play it up for sympathy, or let the illness steal away my life until it defines me. As a result, I’ve made a habit of ignoring pain or discomfort and have several tricks up my sleeve for disguising what symptoms the average joe would be able to pick up on. I constantly monitor my body, making certain that I’m aware of what symptoms I’m experiencing and what that means in the grand scheme of things. I research my condition almost daily to stay informed on treatments, advances and techniques to make my life easier, as there is no cure. I am an expert in my own body, with its malfunctions and mistakes, and I use my knowledge effectively to keep hidden what is and maintain a look of normalcy.

It’s not that I care that people know I’m sick. I’m blogging about it, so secrecy obviously isn’t an issue. The trouble is how people treat me whether I am or not. If I’m having a good day and medication time comes around, people freak out when they see me pull 10+ pills out of my bag and start popping them. I’ve been accused of addiction, or dying and not telling anyone, and on one fateful occasion attempting to give someone else a heart attack. On the other hand, if I’m having a bad day and need to travel in a wheelchair or collapse in the middle of the room the accusations become about faking, overreacting, playing for attention or having self-destructive psychiatric behavior.

Truth is, it’s exponentially easier to deal with people who treat me like I’m fine. Granted, I get disapproving looks and snarky comments when I have to ride through a theme park in a wheelchair (it doesn’t help that I look like I’m 16) and hiding my condition adds to the general consensus of “faking it” whenever I do experience severe symptoms. However, this is to be preferred over sympathetic sighs, constant questions of whether or not I’m okay or being handled like a porcelain doll. I realize that I AM a porcelain doll, but that doesn’t mean I can’t aspire to be Raggedy Ann. Besides, it doesn’t seem fair to make the people around me join me in constant worry for my health and safety. I can manage that all on my own.

If anyone’s interested, this nasty little bit of undeserved kharma is called Dysautonomia, and I have a specific strand called Postural Orthostatic Tachycardia Syndrome or POTS. To make a long medical history short, I experience syncope (collapsing and passing out) and the much worse near-syncope (nearly passing out and feeling like someone really needs to just put a bullet in you and end your misery).  These two are caused by my autonomic nervous system not working right and in turn not forcing my circulatory system to work right. The severity fluctuates on a number of factors (how much sleep I’ve had, if I’ve taken my pills on time, if someone over in Asia sneezed during a blue moon, etc.) and I have days of “I’m fine, I swear” and days of “Oh holy hells, who put that floor there?!” I deal with the symptoms as best I can – sometimes I get the best of them and sometimes they get the best of me.

If I didn’t make an active stand against my disease, I think it would swallow me whole. If I didn’t approach my live with humor and lightheartedness it would easily drag me down with it. That’s why I hide it – not to pretend that it doesn’t exist, but to prove that I can be stronger than that, that I can win a war against my own body breaking down. I can keep up my life, my goals and my desires regardless of how my body fails.

I might fall down, but I’m Living Falling Down.

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What would the world be like uninhibited?

Everyone has that little voice in the back of their mind that tells them not to do things, or in my case several voices constantly repeating “Heather, the squirrels wouldn’t appreciate that”, but what would the world be if those voices stopped working? If the filters were removed from speech and actions, would the world even survive the onslaught of anarchy?

Would crime run rampant? Would people lie, cheat, steal, or harm each other without inhibitions to temper them? Or would it be the greatest outlet of creative ingenuity the Earth has ever seen? Without the mind saying “you can’t” or “you shouldn’t” or “no, corndogs aren’t really dogs”, mankind would be free to create some of the most brilliant works of freedom, expressed without limitations or shyness.

The painters would abandon the scholarly definitions of art, perhaps the brushes altogether, and revel in the feel of the color splashing forth without critique or self-doubt – a pure and unadulterated expression of the original idea unfiltered by the mind’s attempt at rationalization.

Course, if that was the case, the art critics would finally start dining on the flesh of the artists they demean like we all know they truly want to and any art that would be created would be rendered moot in the wake of the horrendous destruction of human lives. The only thing that would overshadow this tragedy is what the celebrity gossip bloggers would do to Starbucks. I shiver at the thought.

Better that we keep our inhibitions, I think. No need to increase the speed at which we’re hurdling towards a world dominated by cockroaches because human beings have annihilated themselves in a fit of beastial ID outrage involving push pins and WD 40.

On an unrelated note, I would live to express my love of the cockroach overlords and request that they not blast me into oblivion for being of an inferior species. Thank you.

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I’ve never written a blog before. I’m the type of person who likes to keep my private life private, and so I’ve never thought to share with the whole wide internet.

However, the allure of a blank canvas, or in this case an empty web page, is too strong to ignore.

I’ve yet to decide what I want to write about, whether it be opinions, information, or the random nonsense that seems to plague me through my day to day activities (such as the persistant question of whether or not hamsters would make effective ninjas) but once I do, I’d like to get this thing up and running on a weekly basis. It’d be nice to have a forum to express myself, and from what I hear, blogging is a lot like counseling without having to pay to sit on someone’s couch for half an hour.

So, we’ll see what I come up with, and, for the record, I think hamsters would make much better pirates than ninjas. It’s a lot easier for them to wear eye patches than hold nunchucks.

Ttfn,

Heather

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