When you love a woman you should love her, and only her, honestly, and completely, and always. Love is real when you’re with someone and the rest of the world goes away. You look in her eyes and everything around you gets soft, muted, all you see is her. All you feel is how much you love her. You look in her eyes and you’re not worried about, schedules, money, the tedium of the day. You’re not scared of dying, where you might go after you die. All you see is her, you don’t want to be anywhere else, with anyone else, ever. She’s more intoxicating than any liquor, any drug. She’s your everything. That’s love, and you know it when you feel it.

Polygamy’s something, but that something isn’t love. Not really.

I think Steve was so successful because he never set out to sell computers or digital music players or smart-phones, he was selling people a new reality, a reality in which technology would make life better. People wanted ways to organize their photos, listen to their favorite songs while taking the train to work, so he gave us the technology to make those things possible. Steve saw the little facets of life that were kind of annoying, like cluttered disks full of digital pictures, that giant CD collection that kept its own collection of dust, so he gave us the Mac and iPhoto to keep our memories organized and safe, iTunes and the iPod so we could ditch those dusty stacks of CDs, then the iPhone so we could easily stay connected to the people and things we care about, any time, any place. When he introduced a piece of hardware or software, he didn’t just rattle off feature-sets, he talked about what this shiny new whatever could DO to make your life a little bit better, to make tedious things not tedious anymore, and he always did so with intense sincerity and passion. He honestly believed in whatever new reality he was trying to sell, which convinced us to go spend some money to give that reality a whirl, and sure enough, Steve would be right. That device or software we bought did make life better, easier, more fun. I went to a bunch of Steve’s keynotes, I was there when he introduced iTunes, iPhoto, various colors and shapes of iMacs, nobody ever left bored, skeptical, we all wanted the “it” we just saw. We wanted it because Steve just seemed so completely and honestly certain that “it” would make our little pieces of the planet better. I get the same vibe watching Steve on-stage that I get from Kurt Cobain, they were both artists, and whatever they gave us on-stage was always so absolutely fucking honest, and they both changed the world, definitely changed my world, with that honesty. Perfect raw honesty is always beautiful, people want to be a part of it.

To me, Steve wasn’t just the CEO of some giant faceless technology company, he was someone I knew, someone I’d talked to back when I could talk. I interviewed him about Mac games back when I wrote about Mac games, the first and only interview he ever gave to a Mac games site. I was just a twenty-two year-old nobody, but he took the time to talk to me, to answer my five questions. A few years later, I was supposed to give the keynote at this big assistive technology conference and receive some kind of award, so I e-mailed Steve and said that I wanted to give that keynote on the best MacBook Pro available, to show people how far a Mac and assistive technology could go. Two days later, I had that MacBook Pro. I happened to choke on some pineapple juice a few weeks after I got that computer, and a few days before the conference, so I didn’t get to use it for half of the cool stuff I promised. I mostly used that computer for survival, two months in the hospital, those months at home figuring out how to be okay without being able to talk. I don’t think Steve regretted sending it, I was still pushing assistive technology to the bleeding edge, just in a more private way, with lots of drugs and liquor because my girlfriend left me. Steve sent a nice “You’re welcome” in reply to my explanation and “Thank you.” I think Steve liked assistive technology because, I think in his eyes, assistive technology shows the Mac, and now iOS devices as well, doing what he truly meant for them to do, but one step further. Apple devices and assistive technology don’t just make people’s lives better, they make people’s lives possible. There’s a difference between existing and living, for people with disabilities assistive technology is much of that difference, and I think Steve understood that fact. I think that’s why he talked to me that first time, why he sent me that MacBook Pro, why even when Apple was drowning in red ink and Steve was cutting departments and programs like crazy, he never cut Apple’s assistive technology efforts. Instead, assistive technology has expanded over the years at Apple. Apple makes sure that assistive technology developers get the support they need so their products don’t just work on Apple devices, they shine. My assistive technology doesn’t break every time OS X gets updated, because Apple supports its assistive technology developers, because Steve Jobs wanted assistive technology on the platform he created to make people’s lives better.

Steve Jobs really did change the world, he made life better, easier, more fun, and for some people, he made life possible. I met the woman I love, the other piece of the puzzle that is me, because of Steve’s technology. I wanted to send him an e-mail showing him some projects I’ve finally finished, but mostly, I really just wanted to tell him how the Mac has affected my life since I quit talking, how I met someone I want to be with for my ever because iChat let me say, “Hi!” I wanted to say thanks, I’ll always be sad somewhere in my head that I didn’t. Maybe he knows all this, has a better view of things from where he is right now. Maybe I’ll get to talk to him again somewhere else. I don’t know, I guess I’ll find out eventually, maybe.

The line from this song that I can’t get out of my head, I don’t know what to do with your clothes or your letters that’ll make a whisper out of you…

I don’t know either. You can get rid of all the things that someone leaves when they leave you, but they’re still so right these, always there. You see them every time you close your eyes.

At least it’s a pretty song.

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.

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.

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.

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.

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.