Monday, November 30, 2009

Casette 1. Side A. "People Are Strange"

The following is taken from my first entry into "The Outraged Person's Guide To Surviving MS", a project started by Lori K. of the blog 12 December 2008

We're all different, aren't we classmates? And what happens to you or me or he or she or anyone who deals with Multiple Sclerosis is gonna have a different perspective when it comes to all this stuff. You hear that almost the instant you discover MS.

It's like the first sentence in the handbook. Everyone's MS symptoms and effects are different. You read that and go, "Gee, thanks, that doesn't help me whatsoever when I'm trying to figure out what is wrong with me". The bizarre things that happen to our bodies without explanation are maddening. Not like life-stuff isn't frustrating enough already. Life for people with MS is serious toughness. Especially for the undiagnosed.

I was undiagnosed for years. I was told the tingling and the numbness were my fault. I was told: You're out of shape, that's the reason. You're stressed, that's the reason. You're... (*doctor shrugs*) sick? MS and it's undefinedness, combined with doctors who run the system like a business instead of like actual healthcare, can drive a person insane. Later when you're diagnosed they will tell you that stress will worsen your condition. So maybe a lawsuit is in order for all those years of misery.

Anyway, back on point, we're all different. Duh. But there is something you can't blame on MS and the symptom grab-bag, and that is awful people. Lori touched on it, but I want to rant a bit more. There's a community out there (and it's pretty damn big) that believe saying your prayers and eating your vitamins are gonna solve the big problems. Throw in "the power of positivity" and you got yourself a recipe for eww.

Chat rooms of MS'ers are out there full of people who pray for each other and discuss the next wacky theory that might solve this bizarre disease. Websites are up that tell you that Multiple Sclerosis is merely a hiccup in a life and you can live easy-peasy as everyone else if you just stay positive. Then there are the people who are more concerned about the politics of MS rather than their own health. All of these people form the majority because they are loud, pushy, and rally like crazy. Meanwhile those of us who are realistic and NORMAL just go about our business and chat with our friends and avoid our families (don't lie, you know you do).

Because of normalcy, our web-presence is obviously lacking. The internet is basically weirdos, funny cat pictures and pornography. Finding real people like us is tough. Yes, I just called myself real. Real weird! (These are the jokes people, start laughing) But it's like I've said when talking to my MS buddies whenever the new big MS thing hits the web - These people are so unreal. All the "living with MS is easy" crap is warping the minds of people without MS. It's also harming new MS'ers.

Poor newbies. They're shamed into thinking that they are damaged if they aren't positive and active. Shamed because they aren't smiling while their body does whatever it wants without reason. Shamed into believing they aren't normal. Instead, people need to be able to read about how people handle life, good or bad. No discussions, no debates, just lay it all out and let people decide for themselves how to live their own lives.

No one is perfect, no one is normal. We're all freaks. MS or not. People need to get that through their thick skulls and maybe be a whole lot less uptight. How about we let people live their lives without shoving agenda down their throats, without pressuring with positivity, without forcing Jesus or whoever on them. Calm down, be a little less rah-rah-rah, and be a little more cool. Remember cool? Fonzie was cool. Be more Fonzie.

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