My Whole Expanse I Cannot See…

Tattoo by Fish, Doc Dog's Las Vegas Tattoo, Ybor City

So, this is my fifty-sixth tattoo, I’m honestly running out of space. I mean, I could put little images all over me, but as far as full lines of text go, we’re getting toward the home stretch, I think.

This tattoo is from a Nirvana song, an early demo version of one of their most famous songs, Heart-Shaped Box. The demo’s off their With the Lights Out collection. I really like this version a lot, you can tell Kurt has the idea in his head, a song about an intense, crushing relationship with a woman, he has the sound figured out too, but he’s still sorting out the words and the imagery. I really like feeling like I’m sitting in on that creative process. He uses lots of funeral imagery, I’ve been buried in your heart-shaped box for weeks…Then the last line, the line etched into my upper-arm, I’ve been locked in heart-shaped coffins for too many weeks…

Now’s supposed to come the why of it, some sweeping narrative that would explain me. Honestly, I’m just tired. I experience those words every Goddamn fuckin’ day.

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. الروليت الامريكي

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. العب بلاك جاك 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. كيفية لعب بوكر I’m still here, I’ll keep writing about right now.

Tattoo by Fish, Las Vegas Tattoo, Ybor City

So, this tattoo is from Aimee Mann’s highly acclaimed song, Wise Up, off the soundtrack for the film, Magnolia. I already wrote about Magnolia and Wise Up a few weeks ago, so I’m not going to do it in any great detail again here. Oh, don’t confuse the poppy as being part of this tattoo, it isn’t. Anyways, Wise Up is just a really beautiful song, the gist of which is life will continue to feel bad until you do something to make it feel good.

Right now, I just want to be next to someone, to hold her close, tell her how I love her so completely, ceaselessly. I’d sleep. It’s easy to sleep when I don’t feel like part of me is somewhere else. It’s easy to sleep knowing that when I wake up, I’ll see her exquisitely beautiful face. Her eyes would be all drowsy, but silently say that she loves me. She’d ask me if I slept any, she’d tell me about her crazy dreams. I haven’t been there in so long, but that’s how it was. I could wake up next to her every morning until I quit breathing, the permanent quit, every morning I’d feel blessed. She’s the only person who lights this empty place in my heart, it’s like a million little twinkly white Christmas lights strung all over a huge ferris-wheel. That’s how she makes me feel inside, bright and happy, like there’s adventure all around.

I want life to feel good, like I absolutely know it can, entirely. I mean, as dark as I get, it’s not because I believe life is just one concatenation of misery until you’re dead. I don’t think that at all. Life is something gorgeous, there’s been so much beauty and adventure in mine, so I know for a fact that life can be all puppies and flowers. There’s just this hole in me, this giant abandoned fairground that’s shrouded in sadness, loneliness. I’ve done some stupid, awful things trying to fill that place with light again, which only served to make that place darker, and lonelier. I need to wise up, that’s the point. Stop doing things that make me more empty, stop digging myself nice, deep holes. Don’t die this way.

I miss my light, more than I can explain.

Me, my shiny shirt, and a gun

So, as I mentioned earlier in the week I have this Things to Do list, just things I want to experience before my lights go out. The list has kind of been on pause for awhile, a long awhile, but today I crossed something off. A small something, but something just the same. A fun something, at least. I went to experience a shooting range. My assistant, Lauren, it turns out her fellow is military, so after she mentioned that I wanted to visit a shooting range, the rest just fell into place. He recommended the range at Knight Shooting Sports, came with us, and brought a gorgeous little 9mm semi-automatic pistol. It was fun, I got to dress all in black, touch a gun for the very first time.

Now some pictures…

Me at the range

Lauren and her fellow

I think movies and tv capture guns pretty well, pretty much perfectly from an aesthetic perspective. We see all sorts of guns, handguns, giant cannon-esque shotguns, rifles that fire hundreds of rounds in just a few seconds. We see how to hold these guns, reload these guns, we hear all the little clicks these guns make when they’re taken apart and put back together. We know all these things without ever actually physically being anywhere near a gun. There is, however, one aspect of guns that I now realize movies and tv cannot capture, guns are LOUD, not 5.1 movie theater surround sound loud, or crank your tv to 99 loud, it’s an entirely different kind of loud. That tiny-looking 9mm pistol, I’ve never experienced anything like it. It really became clear when Lauren went all Reservoir Dogs, pulled the trigger bangbangbangbangbang, fuck aiming, let’s do this, motherfucker. Every time she puffed that trigger, my cheek bones vibrated, even hurt a little. It was intense and unnerving and completely exhilarating, all at once, and I was several feet back from all that power. I mean, I was at a shooting range with a 9mm pistol, with my ears protected, and it felt that palpable. War, for example, is like what I experienced, times ten thousand. The thought is mind-blowing.

So, that was my today. Something I’ve really wanted to do, done. If I kept writing, kept this sentence going, things would turn really melancholy. I’ll, just, not.

Tattoo by Fish, Doc Dog's Las Vegas Tattoo, Ybor City

So, this tattoo, #51, is from an Alanis Morissette song, These R the Thoughts, which is off her MTV Unplugged record. MTV Unplugged is tied with Supposed Former Infatuation Junkie (SFIJ) as my favorite Alanis record. MTV Unplugged is so great because Alanis’ voice is gorgeous and being outside the typical studio setting you really get to hear that voice. I’ve seen her in concert too, she just has a spectacular, raw, beautiful voice. MTV Unplugged shows her voice, and it has a few of my favorite songs off of SFIJ, which is why I love it so much. These R the Thoughts is only on MTV Unplugged and no other studio record. The song’s basically a series of worries, questions she asks herself throughout a day. The song doesn’t have any hooky chorus, it’s just a series of questions… Why do I feel cellularly alone? Am I supposed to live in this crazy city? Can blindly continued fear-induced regurgitated life-denying tradition be overcome? It’s so not a hooky pop song, or rock song, it’s a journal set to great music. My favorite section, part of which is etched into my arm, Why do I fear that the quieter I am, the less you will listen? Why do I care whether you like me or not? Why is it so hard for me to be angry? Why is it such work to stay conscious and so easy to get stuck and not the other way around? Both of those sections, the latter, obviously, sound so much like the questions I ask myself, the worries in my head.

In a larger sense, sure, I do worry that if I quit writing here, quit trying to get published in print, quit writing altogether, I’d just disappear. Nobody would care, or come looking for me, or even idly wonder, “Whatever happened to that guy, he wrote about zombies and sex, and loneliness and suicide and addiction and dark optimism and some girl? I think it was some girl. He had all those tattoos… What was his name? Michael something?” I think most writers, even the ones who get seriously paid, write because we love the craft and want to be remembered for what we did with it. We write to be known. I don’t think Jeff VanderMeer or K.J. Bishop or Michael Cisco would quit writing if the paychecks stopped. We have words in our blood and we cut ourselves so that all those words come pouring out, and we want people to watch. It’s a little bizarre, but we want people to watch. The words can’t just stay inside, the words flow thorough our veins and bounce around in our heads, we’re full up, so we have to get those words out and put them somewhere else. Yes, I do worry about getting quiet and fading into oblivion.

Really though, it’s much deeper than that, it’s less about a writer’s want and more about something personal. In the song, Alanis is talking about just one person. I only worry about one person not listening, not wanting to know me. The day we met we talked for three hours, I so wanted to know her, and I so wanted her to know me. I was scared that night, that first night, that there wouldn’t be a second. It’s something out of Shakespeare, something only story-tellers tell, but I loved her that night. It was just one long IM, but as ridiculous as it sounds, I loved her. She sent her picture and I only fell harder, I just left the picture open all night. I didn’t want her to be just a dream, it felt like a dream. No one’s eyes could be that beautiful, showing that much intelligence and warmth. We went to our first movie together, those eyes saw mine, I got lost in them. That was just about four years ago and I still get completely lost in her eyes, I just keep loving her more. Every-day I love her more. My words, they’re all hers, they’re all so that she can know everything that’s in my head. Lots of them are here, some of them ended up in print on Amazon.com. There are pages upon pages that no one, save her, will ever see, they’re hers, written for her eyes and no one else’s. Most of the words etched into my skin are hers. It’s all just so she can know me, and be close to me. How can you really be close to someone if you don’t give them everything in your head, beautiful words, dark words, scared words, every word? I love her more than I can explain, but I try, I so try, in flash fiction, in e-mail that’s written after bad dreams, in romantic paper letters. She asked, “Why do you love me and not someone else? There are thousands of women, thousands of mes.”  I didn’t have an answer all in a pretty wrapped box with a teal silk bow on top, the question just scared me. I’ve written a mixed media novel in answer to that question, digitally, in print, on my skin. I didn’t say the right thing, I got frustrated, it just felt like something you say before you disappear. How could she ask that and not know my head, and my heart? I got upset, overly so. Though, the simple honest answer is that when I’m with her, I never want to be anywhere else, with anyone else. When I’m not with her, it’s like part of me is missing, so I’m never completely anywhere since we met.

I got the tattoo when she felt far away, I felt like nothing I said meant anything. So, I got quiet, and I got scared. Now I’m here and she’s somewhere else. I’m lost and drowning in words she doesn’t want anymore, not from me.

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.

So, I  watched Magnolia earlier, I really forgot its complete brilliance and beauty. It’s a long movie that doesn’t feel long, basically a series of interconnected stories, themes like, the past repeats itself, mistakes and regrets aren’t unique to the individual. It’s a fast movie in that the cuts between stories are quick, it doesn’t linger on one character’s life for too long. There’s also a lot of camera movement, not shaky Cloverfield camera, just lots of panning, zooming. The cuts and the camera give Magnolia a very fast-paced frenetic feeling, even though its thirty minutes shy of three hours long. It’s also a movie about really fucked up people, people dying physically, emotionally, people whose stories do and don’t work out. I was watching with a friend and she asked, “Are people really like that?” I didn’t feel like putting down the words, I just eyebrowed a “yes.” There’s a scene with Philip Seymour Hoffman, he’s a Hospice nurse trying to track down this dying fellow’s estranged son, trying to fulfill a final request. His son, played by Tom Cruise, turns out to be a pretty famous, pretty vile, motivational speaker, teaching loser guys how to have lots of sex with lots of women. So, Seymour Hoffman’s on the phone talking to one of Cruise’s underlings and says something to the affect, I know this is something like a scene from some movie, but I think movies have scenes like this because this actually happens. I mean, that’s so much of why we go to movies, because we identify with what we see, or we want to do or be what we see. I answered my friend with a “yes” because my experiences have been so much like the characters we were watching. Depression, loneliness, addiction, loss, regret, I know those experiences, felt them, feel them, been drowning in them. Yes, people really are “like that.”

Magnolia’s soundtrack is another reason I love it so much, Aimee Mann contributed most of the songs, specifically written for the movie. One particularly unusual, very moving scene, cuts to each character singing Wise Up. My favorite line, “You’re sure there’s a cure, and you have finally found it. You think one drink will shrink you ’till you’re underground and living down, but it’s not going to stop, it’s not going to stop, it’s not going to stop ’till you wise up.” It’s very surreal, but the scene totally works. It hit me really hard, I broke-down, sobbing. I breakdown quietly, nobody ever notices. Almost nobody. Listening to Aimee’s lyrics, crying, it reminded me of something.

It was four years ago, I was with Sara, my girlfriend then, kind of. We’d broken up, but started finding each other again toward the end of shooting our This American Life episode. So, she wanted us to go see a Chris Isaak concert, and I just wanted to go anywhere with her. The trach was still a little fresh back then, I’d still get nervous going out sometimes, so I’d have wine or brandy before getting into the car. Not the best way to cope, but it worked awhile. I didn’t want to not take her, I didn’t want to be weird and nervous, I just needed the crutch to get there. It wore off and I realized I was okay because I was with Sara, everything was always okay with Sara. So, we’re leaving the concert, which was great, we’re walking back to the car under a summer night-sky. I look up at the stars, bright beautiful stars. I didn’t want to be anyplace else, just right there, under those stars, with Sara. As we’re walking she takes my hand and out of nowhere starts singing Aimee’s You Do, off the Magnolia soundtrack. And you do, you do, you do, you really do… I never thought I could love her any more, but holding her hand, listening to her sing under those stars, I did, and I felt so completely loved. I quit the pre-outting drinks after that night. I didn’t need them, and we went so many more places together. We held each other and sang so many more times. Losing her hurt so much.

I never thought I could find again what I felt with Sara, but I did, so intensely, so beautiful, but that’s gone too. Losing Monica hurts so Goddamn fucking much. I don’t know how to be okay.

So, I’ve been reading The Narrator by Michael Cisco, one of the most brilliant writers putting down words today. I’ve been reading The Narrator for… awhile. For me, Michael Cisco doesn’t write the sort of books one flies through. At least, I definitely don’t fly through them. His prose are thick, the words are almost heavy in your head, but this is because the images he creates with the words are so vivid, and real, and often yet so very dream-like, or nightmarish. He takes scenes of dream and nightmare, with all the inherent incoherence and impossibility that the human mind can create intimately, in the dark, and puts those scenes on paper in words. I don’t rush through words like that, I want to take them all in, to see the images they’re creating.

When I do finish The Narrator, I’ll review it, but really, just go buy it. I don’t think Cisco will fall on his face during the second half.

Tattoo by Fish, Doc Dog's Las Vegas Tattoo, Ybor City

This is my first foot tattoo, it’s from one of my favorite Elliott Smith songs, Angel in the Snow, off his posthumously released collection, New Moon.

I’d say you make a perfect

Angel in the snow

All crushed out on the way you are

Better stop before it goes too far

Don’t you know that I love you?

Sometimes i feel like only a cold still life

That fell down here to lay beside you

Don’t you know that i love you?

Sometimes I feel like only a cold still life

Only a frozen still life

That fell down here to lay beside you

It’s such a beautiful little song, and sad. Falling so hard, feeding so… apart.

People keep telling me, especially during and since yesterday, how amazing I am, that I’m so smart, I push assistive technology forward. I hear about all the good I do, the people I have helped and will help, with the way I show technology, with my writing. I’m told I should be proud of myself.

Helping people is great, and I seem to be born into it. I have the intellect and I’m ridiculously blessed with access to technology. I have always managed to have the best gear. NeuroSwitch, this software, SwitchXS, their developers pretty much designed both solutions for my specific desires, to my specifications. The thought being, design for the high-end and you help everyone, novice to advanced.  I take the technology and show vast possibilities, people get inspired. I want to help people, I’m glad to do it. I can’t imagine not helping as long as I’m in a position to do it. I just don’t see why I should be proud of myself for doing something that’s simply right. You help people who need it, especially if you’re suited to do so, period. That’s what community is all about. I need plenty of help, so it’s just right to give back. I remember not having technology, nobody should feel trapped. When someone’s alone in the dark, all I want is to pull them out and make them feel safe, because I know alone, and I know dark. Helping people isn’t anything to praise oneself over.

Also, and this is just me… When I can’t sleep at 4 AM, knowing that I help people, it doesn’t make me any less lonely or any less scared. When I’m really down, I get a lot of “You should be happy that you help people, you should embrace that, you should let that fill you up. Happiness comes from within. Stay busy, work to help others.” I do help people, even when I myself feel dead inside. I can’t just quit, and I really don’t. The thing is though, I’m not Jesus, I’m just a fellow with a few hopes, a few dreams, certain things I want so very badly before I’m gone, and while I honestly desire to help people, and do so willingly, a life of service can’t be “it” for me. I’m supposed to be filled with this… peace, but I’m not. Really, almost nothing I do makes me feel pride or genuine contentment or genuine happiness. It’s all temporary, at best. I have my own, deep-rooted wants that go beyond service and being glad to simply exist.

There’s this scene in Cool Hand Luke, my favorite Paul Newman movie, where Luke (who has really done nothing remotely worth death, his original two year prison sentence for getting drunk and destroying parking meters), after escaping prison, is in a church surrounded by cops who want him dead. He starts talking to God, calls Him “Old-timer.” He basically says, Well, Old-timer, you made me this way (headstrong, smart, kind, rough, willful, at odds with everything), then you stacked the deck against me (put him in a position of service, obedience, a mundane “do as you’re told, don’t want for anything” life). So, what am I supposed to do? I know I’m a screw up, I make plenty of mistakes, but help me… Luke just feels stuck, and lost, and wanting. In prison, before his chat with God, the inmates looked up to him. All Luke’s courage, defiance against the system, all the times he got beat down (literally) only to get right back up again, it fed everyone else’s hope and strength. This role is basically fine for Luke, he wants to help, cares about others, but after getting the shit beat out of him in a particularly brutal way, with everyone looking to him to make them feel better about the situation, Luke finally breaks down and screams, “Stop feeding off of me!” They see Luke as this larger than life, break the rods of our taskmasters, Christ-like figure, but he’s not. He’s just a man, a basically good man who wants to do right, but who has flaws, who makes mistakes, who gets tired, who needs help himself sometimes. I know how he felt.

I mean, I’m completely grateful for all the spectacular, unique things I’ve gotten to experience, for all my “stuff.” I’m blessed, I know I’m blessed. I’m thankful for all of it. It’s just, no matter how many famous people I meet, or places I go, or people I help, or compliments I hear, or how well I write, none of it fixes the cracks that hurt at 4 AM. I’m missing something, I’m missing the one thing I’d trade everything else to have. It’s really nothing shocking, it’s not even unique within the human condition, it’s practically boring, yet to me it’s completely everything. No, I don’t want to be able to walk, or breathe and talk without machines, it’s nothing silly and pointless like that. I just want to go home, what feels like home to me, at least. It seems that the harder I try to have the only thing that’s truly important to me, the further away it gets. I’m so tired and uneasy. Being tired and uneasy makes me screw up, it’s this sickening infinite loop. I’ve screwed up so much. People tell me I’m amazing, all I see is failure, and time flying by.