My Whole Expanse I Cannot See…

I formulate infinity stored deep inside of me…

At least she knew

July 19th, 2011 | Category: Life

So, I recently read The Wordy Shipmates by Sarah Vowell, it’s about the folks who colonized New England in the 1630s. They were a bunch of well-meaning, but often destructive, ultra-religious book nerds. Their book of choice, the Bible. They were mostly Puritans. You work hard, go to church, read your Bible, you go to Heaven, that’s the gist of Puritanism. Some, however, were Calvinists. Calvinists make Puritans look like a bunch of happy-go-lucky, easy going, fey spirits.

Calvinists believed that before you’re even concieved, before your soul even enters your tiny new body, God has already decided whether you’re going to Heaven or to Hell. There’s no finding Jesus and getting saved, death-bed repentance doesn’t mean anything, God had it all figured out and He wouldn’t change His mind. So, why be good and study your Bible more rigorously than any Puritan, why be flawlessly pious if God has possibly already written you in His Going to Hell book? Well, they believed that people who “seemed” like good people, read the Bible, went to church fervently, raised kids to be pious, those people had souls that displayed all the signs of goodness and were PROBABLY scheduled for Heaven. Folks who were lazy, who couldn’t quote the Bible chapter and verse, who stole firewood during a hard winter, they behaved so because they got a Hell-bound soul. So, you ended up with a bunch of uneasy, sometimes terrified religious zealots desperately trying to “look” good.

One woman in town was particularly terrified. She was depressed a lot, didn’t like raising lots of kids, or practically living at church. She didn’t feel “good,” but tried really hard to conform. She was so scared of the not knowing which soul she was given. She couldn’t sleep, was nervous all the time. She asked the church for help, guidance, but the Calvinist Church wasn’t exactly a loving church. She didn’t find any help at church, or anywhere else. She probably suffered from mental illness, probably needed therapy and loving support from family and friends, but in the 1630s, mental illness wasn’t mental illness, it was that you had the Devil in you. You were evil. She felt evil, but wasn’t certain. She wanted to be certain, she wanted to know whether or not she was damned, just so she could finally sleep at night. To that end, she took her youngest child, a baby, and she threw it down a well. That settled things for her, she finally knew what kind of soul God gave her and that she was absolutely, without a single doubt, damned. She actually felt a bizarre peace.

I don’t want to throw any babies down any wells, I actually love babies. Whenever I see a baby out and about, I always end up transfixed, I watch their little hands, their little eyes, searching, learning. I always think about how that baby could grow up to cure cancer, or write some spectacular novel, or hit liquor and heroin really hard and be dead by thirty, or whatever. Babies are possibility, they’re the essence of potential. Not being a Calvinist, I also see that baby’s soul as perfectly clean, I don’t believe in that born sinful stuff, Jesus got screwed over so babies don’t have to worry about that. I always look at some baby and think about how they’re not all fucked up yet, unlike me they’re completely perfect. So, yeah, no killing babies to figure out what kind of soul God gave me.

Still, I’d like some certainty about some things. Where am I going after I die? I say that first, but it’s actually pretty low on my Worry List. I just don’t want to die, I want to avoid the dying. I died once, it didn’t stick, I don’t want to go again. Sometimes I get really dark and want to go vertically open my wrists, but that’s more about not wanting to feel sad than actually wanting to die. It’s also different when dying is this circumstance that’s forced on you. If you’re accidentally drowning in pineapple juice (that’s what killed me) or the hose on your vent breaks while you’re trying to buy a four hundred dollar Tumi bag, the absolute last thing you want to do is die. You beg God not to let you go, you beg to be with one certain person one more time. You’re all, “I’ll be good, really, I promise.” At least, this is how I am.

I worry about the when and how of my dying, mostly the when. I’d really like to know the when, then I could quit worrying about whether or not I have enough time to make up for the bad things I’ve done, enough time to have what I want. and feel happy. I worry I’m going to go out like Kurt and Elliott, sad and fucked up. I don’t want my story to end that way, the way it is right now.

That’s what I worry about most, running out of time, I’m constantly aware of time. I feel time, like it’s something tangible, rushing over my skin. I feel this constant sense of urgency, especially now, because I know I’m not where I want to be, and I know I’m one breath closer to to not breathing with every breath I take. I wonder if I have enough time to find my way to someplace bright. I’d like to know because living with the mindset that every day could be my last day is actually really exhausting.

I wonder how many of those Tony Robbins, motivational, “Live like there’s no tomorrow” types, I wonder how many of them actually walk that talk. Living like that, really believing the words, it’s not easy to carry. When you want something, you want it like there’s a gun to your head, like, at any second that trigger could get pulled and you won’t ever get to that kiss, that I love you, that waking up somewhere beautiful until you quit waking up. People don’t understand why spending time together is so important to you, because your clock feels so much faster than theirs. For other people there’s always tomorrow for walking under stars or curling up in bed to watch some movie about a talking fox, and to you, both experiences are more important than winning a million dollars. Loss hurts more because you don’t believe that chances are unlimited, in your head, chances are like a pack of used bar matches, you only get so many lights. Sometimes it all get so heavy that you look for ways to stop thinking, to stop wanting, just for a few hours. Liquor bottles and drug needles do that trick, but they’re exactly that, a trick. They just make it so the clock disappears behind a curtain, but just like any magician’s assistant, the clock always comes back.

Once you actually know about these things, once you stop seeing the end of your time as some kind of fiction, well, there’s no not knowing them. A bunch of Nirvana songs end up making perfect sense.  Like that Calvinist woman, lack of certainty makes peace hard to find. Such is true in my experience anyhow, but like I said, I’ll never toss a baby down a well for answers to questions that’ll probably come when I don’t answers anymore.

5 comments

Wrong, wrong, wrong

July 08th, 2011 | Category: Life,Opinions

So, a reader recently left this… awe-inspiring comment, then she e-mailed me just to make sure I got it.

Here we go…

I’ve been following your blog for a while and I am sorry to see how depressed you’ve been feeling. One certainly cannot blame you and I think I’d be having a change of mind about the trach as well. As someone who works in the medical field, I say without reservation that modern medicine is at times a blessing and also a curse – no question about that. Could you (would you want to?) communicate to your doctors that you want the trach removed and want to be DNR/DNI? If people can proactively decide not to be intubated, can you retroactively decide against a trach?

Just a friendly suggestion, but what if you started writing some sort of legacy pieces that are more congruous with where you are mentally right now? Maybe try writing your own obituary, advice to future generations, survival guide for families new to a SMA diagnosis, how to deal with a global environment that is fucked, how not to fuck up the colonization of a new planet, etc. It could be depressing, honest, depressingly honest, satirical..

After I stopped feeling like a turtle who got smacked in the head with a liquor bottle, after I stopped gaping at my e-mail client, I read it again. I did just wake up, maybe it was the tail-end of some fucked up dream, but no. It’s real. I’m writing about it, so it must be real.

First, let me acknowledge that I’m sure the commenter is totally well-meaning, totally “just trying to help.” Nevertheless, it’s also hands down one of, if not the most, disturbing things I’ve ever read. I’m not even sure where to begin discounting its wrongness, there’s just so much.

Modem medicine is a blessing, my trach is a blessing, I’m so beyond blessed to have this little plastic tube in my throat and doctors who take such good care to make sure I get to keep going. I would never in a million years sign a DNR/DNI, I can’t even imagine “retroactively deciding against” my trach. I like my tubes and hoses right where they are, and if I ever need more, I’ll get more. I’ll do whatever it takes to keep breathing, and I want all my doctors to share in that idea. I don’t think anyone with SMA has any business signing a “let me die” piece of paper, and it honestly scares me to think that anyone in the medical field would encourage such. We have assistants and assistive technology and traches and portable vents so that we can get out into the world and have the chance to live a decent life, just like anybody else. Nobody’s guaranteed a decent life, but so long as we’re still breathing, we have that chance. That chance to be someone’t best friend, someone’s lover, even someone’s mom or someone’s dad, if that’s the road you want to try. Signing some “let me die, don’t bother saving me” paper ends all of those spectacular chances.

Yes, I’m pretty down, way down, but that has absolutely nothing to do with my disability or general medical condition. I really hate how that’s such a quick, popular assumption, especially given the fact that nothing I write even implies such. It particularly disturbs me that someone in the medical field could make that assumption. It just shows that society’s expectations for people with disabilities are far too low.

I wrote about how it would have been better had that trach not gone in, I felt completely alone, and sad, missing someone who didn’t miss me, so I wrote how I felt, honestly, in that moment. I didn’t say, “I wish the doctors had quit trying to make that trach fit. If only I could walk, then everything would be so okay,” nor would I ever. That’s just stupid. I wrote about feeling like a fuck up, the weight of my mistakes. I didn’t want to feel that loneliness, that emptiness, so I wrote what I wrote.

People who commit suicide, or try to commit suicide, it’s not always because they genuinely want to die, they just don’t want to feel sad or lonely or empty, or whatever, anymore, and they don’t see a way past those feelings. If you feel bad enough for long enough, you just want it to stop. I’m in the unique position of having that bad thought, that genuine, “I’m going to go open my wrists” thought, then having no choice but to feel it until it stops. It does stop, it always stops, that’s why suicide is such a shame. People run out of time before that feeling stops. For me, before that feeling stops, while I’m feeling it, I tend to write it. I need to get it out of my head and put it somewhere else. I am down, really down, and I don’t know when that’ll end, but absolutely none of it has anything to do with changing my mind about the little plastic tube in my throat. I lost my best friend, I lost someone I love more than I could possibly explain. I’ve made mistakes, screwed things up. I feel like I’m drowning, I’m scared I’ve made too many wrong choices and I don’t have enough time to do things right. My trach, my disability, my general medical state, they are no source of regret.

I’m fucked up like lots of people are fucked up. Elliott Smith, Kurt Cobain, they wrote song after song that tell stories like mine, stories I know from experience. They didn’t write those songs because some doctor stuck a little plastic tube in their throats.

I will never, ever regret telling that e.r. doctor to do whatever he had to do to keep me going. I’d make the same choice a thousand times over. I’ll die when God figures it’s time, when there’s completely nothing left to save me. One day, a hose will break, or a trach won’t fit, or some infection will fill my lungs until I quit breathing, nothing anybody does will save me, but people will try, and I’ll want them to try.

Oh, and no, I won’t be writing any “legacy pieces,” like I’m already dead. I’m still here, I’ll keep writing about right now.

12 comments

Tattoo #52

June 16th, 2011 | Category: Life,Tattoos

Tattoo by John, Las Vegas Tattoo, Ybor City

So, this is from a Nirvana song, Blandest (Demo), which is off their With the Lights Out collection. I wonder how many songs from With the Lights Out would have been polished and put on studio records and become part of the broad lexicon of pop-culture rather than be these really obscure treasures that pretty much only Nirvana fans ever find. What if what if what if.

Anyway, you all puzzle out what if means and why it’s etched into my chest forever, my forever, at least. Leave comments, try to guess, whatever.

1 comment

The last post

June 09th, 2011 | Category: Life,Opinions,Thoughts on Music

The last post, that weird italic paragraph, I found a new Nirvana song that brought that into existence. I was listening to this song, The Other Improv (Demo), off their With the Lights Out collection, and it just sort of took over the post. It’s a fun song, one of few I’ve never heard. Their playing, the music sounds done, but the lyrics, it sounds like Kurt’s just making most of them up as he goes. Lots of Nirvana songs seemingly don’t make sense, but the lyrics are written and set, and if you take them apart you see the parts with meaning. Kurt liked mixing sense with nonsense, the nonsense often being the hooky, pop sounding parts that rhyme.  With The Other Improv, you hear he has the general idea of the song in his head, but he’s making up most of the lyrics on the spot. It was fun just hearing him create a song rather than perform something that’s already created.

I’m thinking about Monica, so I just started writing flash without thinking about anything but the words stumbling out of my head and posting it unfiltered. I saw her, it didn’t go right, I got scared of what she was saying, I reacted wrong. I don’t want this, I love her so much, so fucking much. I can’t fuckin’ sleep. God, I just want to go home. It’s like half of me is always someplace else, my head is never completely anywhere, with anyone. It’s like I’m in this car, drinking down some dirt road, and no matter how far I drive, the road just keeps going and I can’t go home. I’m in this bad dream that doesn’t stop when wake up.

No comments

Lots of singing

June 05th, 2011 | Category: Life,Thoughts on Music

I have this little plastic tube in my throat, a trach, so I don’t talk. I haven’t spoken a word in, like, three and a half-ish years. You CAN talk with a trach, but the method doesn’t work for everyone, it didn’t for me, lots of choking and what-not. The last sentence that stumbled out of my mouth was, “I love everything about you.” To which it was replied, “I don’t love everything about you.” After that, the choking quit being worth the talking. I met someone else worth the choking and the talking, someone worth absolutely anything. I wanted to say just, something, some little thing I always wanted to say with the voice in my head, but I didn’t get to, and she’d probably reply similarly to the last time I bothered saying something out loud. So, yes, I don’t talk. Most readers know this, but it’s always good to do a little re-capping.

Anyways, back when I did talk, I liked to sing. I sounded like shit, but I liked singing along with Kurt, Elliott, Aimee. I’m told I at least sang on key. Now, I still sing, just, no sound gets past my lips. This has actually created an odd habit, Since I don’t make any sound, I’ve come to feel like I can sing whenever around whoever, in the car, at concerts, getting wheeled into various operating rooms with my iPod Nano, I’m singing like crazy. I probably look crazy, but it really does help to take my mind off things, getting completely lost in the music. Last night I turned my surround sound really loud and sang at the top of my non-voice. I wanted to not think, I wanted to be wrapped in music, lyrics. Really, I wanted to crush a bottle of Percocet into a glass of vodka, with lime, drink that and see if I woke up someplace better, but settled for screaming along with Nirvana’s Live at Reading concert. Just closed my eyes and screamed soundless screams, trying to make the world go away.

2 comments

Writing

May 09th, 2010 | Category: Life,Opinions

I’ve never had this much trouble writing, at least, not since I started writing this blog. It’s a bad feeling, not being able to create, it’s frustrating. I know I can fix it, I know I can dig my way out if I try hard enough. I mean, ultimately, writing is the only thing I have that’s truly mine, I can’t quit. Whatever I write is what will be around when I go wherever I go after I quit breathing, it’ll be all that’s left. I want something left. So, this not being able to write nonsense has to stop.

I need to pull myself together. I need to write with complete abandon. My writing is about absolute honesty, I need to get back to that place. I need to write like Kurt, and Elliott, and Alanis, writing without safety nets. Otherwise, the writing is empty and meaningless.

7 comments

Banging against an amp

July 23rd, 2008 | Category: Life,Random Thought

So, there’s a video clip of Kurt Cobain in concert, it’s a clip from Nirvana’s Lithium video. He’s in a crazy white lab coat thrashing around on-stage, just trashing everything in a totally manic fit. At one point, he’s on his knees holding a giant amp and banging his head against it.

To me, I think it’s one of the great visual metaphors for frustration and lack of control. It’s usually the absolute first image that comes to mind when the entire world seems insane. I see it plenty enough and I’m glad it’s there for me. I drift to lots of images like that, different things for different moods. I actually think about why I do it, and partly, I think it’s how I experience physical emotional outbursts. A fellow gets really upset, maybe he puts his fist through a window. I can’t put my fist through anything, nor can I even imagine myself doing so. There are certain things for which I just don’t have a frame of reference for myself, so I pick an approximation from elsewhere. Why bang my own head into an amp when Kurt Kobain does it so well?

1 comment

Cobain tattoo

May 18th, 2008 | Category: Life

I’m finally getting my Kurt Cobain tattoo. The only question is, which image should I get?

8 comments

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