My Whole Expanse I Cannot See…

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Archive for July 13th, 2008

Inspiring?

July 13th, 2008 | Category: Life

A reader recently wrote…

“I wonder sometimes how you feel about being an inspiration. Because you are, as many have noted (including myself).”

I’ve actually been thinking about this and wanting to write about it for awhile. I understand that people think my life is admirable and that I’m brave, but I feel oddly about it. I mean, if my life and the way I write about it helps people, I’m glad, but I’m not trying to be inspirational. I look at myself and I see a list of flaws a mile long. As I think about it, the idea that I inspire people, I’m trying to figure out why it bothers me. I guess there are a few reasons. I feel like people admire me for things that I’m not. People tell me that they love my “positive attitude,” like I’m some sort of motivational speaker, but honestly, I’m naturally melancholy. I’m a little dark, sometimes I’m a lot dark. Sometimes I feel like Aimee Mann is absolutely fucking right about everything. Sometimes I feel like she’s writing about me. 

but you sit there in the darkness, 
and you make plans but they’re hopeless
Another favorite:
So here I’m sitting in my car at the same old stop light 
I keep waiting for a change but I don’t know what 
So red turns into green turning into yellow 
But I’m just frozen here on the same old spot 
And all I have to do is to press the pedal 
But I’m not      

People are tricky you can’t afford to show 
Anything risky anything they don’t know 
The moment you try – well kiss it goodbye 

I have felt just like that so many times. Wait. Before we go any further, I have to say right now, the core of my melancholy isn’t solely from my disability, I definitely don’t want people thinking that, that answer is way too easy. I’m not that archetype. My disability causes obstacles, definitely, but my frustrations are more born from difficulties that I have getting around things that are in my way. I don’t lie around wishing that I could walk, it’s more that I just want the workarounds to be easier. My family’s just as fucked up as anybody’s, but for as long as I can remember, being disabled has been a non-issue. I was never told that I’m “special,” nor was I raised with the idea that being disabled means that I’m expressly limited or broken. I wasn’t raised with the saccharin-sweet idea that I can do “anything,” but I was also never told that couldn’t do things. My disability just has certain facts. I can’t walk, or drive a car, or play football, but so? There are a million other things to do. I grew up with the idea that I can always try just about anything, though I probably have to do it differently. So, if I am melancholy, unsure of myself, it’s more because of general anxiety than me being disabled. So, I hope we have that straight.

At any rate, I’m definitely not one with an eternally sunny attitude. I’d feel better if I didn’t get complimented for it. I am drawn to dark music and fiction for a reason, and that reason sure as shit isn’t because I’m constantly chipper.

I’m not perfectly brave either, but I feel like people think that I am. I’m nervous and uneasy as often as anybody. I’m scared every time I cough a lot. I’m scared before every trache change. I’m scared because so many of my thoughts go unsaid. I’m scared of dying. I’m scared there’s a Hell and I might go there. Sometimes I’m scared to leave the house, or even sleep. I don’t feel particularly heroic. I was so freaked out after seeing The Diving Bell and the Butterfly that I drank a bunch of brandy and passed out. That definitely wasn’t the brave thing to do.

Now, here’s the tricky part. I’m melancholy, prone to reverie, doubtful, fearful, yet I’m also endlessly hopeful that as bad as anything is or feels, there’s a chance it will get better. I’ve experienced some spectacular things, so I totally know that life can be amazing. Good experiences are like heroin. I’ll endure a million bad experiences just for the chance to have things that I know are incredible. Something inherent in me keeps me chasing that fix. No matter how down I feel sometimes, I can’t quit. I’ve hit bottom so many times in the last two years, but whenever I hit that dark place, something about me lights up and I go again. Maybe I’m just an addict to anything that gives pleasure. I don’t entirely know. I just know that if I want to see Europe, or wake up next to Sara every morning, yeah, deep down, I’m willing to die for the chance. One can just as easily die living a life they don’t want.

If I come off as inspirational, that’s fine, but it’s also not intentional. I just want what I want. I’m flawed, I break, I adapt and I keep going. That is how I want people to see me.

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