My Whole Expanse I Cannot See…

I formulate infinity stored deep inside of me…

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. افضل موقع مراهنات عربي 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. العاب بلاك جاك 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. مراهنات كرة القدم اليوم

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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4 comments

Astonishingly wrong

May 14th, 2008 | Category: Life

The profound wrongness of this thread was so astonishing that I had to post the following reply.

It’s amazing to me that some of you seem to know absolute facts about my life. Still, let me just clarify a few things.

First, I’m definitely grateful to my mom and family, of course I am. She’s done lots of work to keep me alive. Yet, I was raised to feel like a pretty “normal” person, with no real difference between me and my younger brother save for the fact that he can walk and I can’t. I was never coddled or sheltered from anything. I was raised to know that I’d never climb trees or drive a car, but so what? There’s an entire world of other things to do, but sometimes I’d have to do them differently. It was never instilled in me that I couldn’t do just about anything. I was raised like a typical son, really. So, I think it’s natural that I want to leave the nest.

Secondly, I can’t imagine wanting to “pull the plug.” I like the plug right where it is, plugged in and with a back-up battery. I like my life, I don’t see it as a bunch of losses. I never walked, so I don’t miss that. Any other “losses” have been so gradual that it’s easy to adapt. Honestly, the only difficult thing about my disability is not being able to talk, because that happened quickly and unexpectedly. Still, I’m adapting to that too.

Next, I’m not trying to live “alone,” I’ll always need assistants. Those assistants just won’t be part of my family.

Lastly, Sara and I are together because we have lots of fun. We go to movies, clubs, restaurants, things any couple does. We flew to Boston last December to see an Aimee Mann concert. We have practically everything in common. I courted her and we fell in love. Oh, if sex is “NOT” a possibility for us, then I have absolutely no idea what we were doing Sunday morning.

4 comments