My Whole Expanse I Cannot See…

I started writing about tattoo #53 at like, 7 AM, after a really bad dream. As I got to the sentence about dying, the power went out. Certain alarms didn’t work right, it was scary. I was scared. I used to be just scared of dying, dying and going to Hell. I’m still scared of that, I’ll never not be, but I’ve just become more scared of something else. I’m really much more scared of dying and never seeing this one person ever again. That’s the part I talk to God about, everything else is unimportant. At least, not important enough for prayer.

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 screw things up that I don’t mean to screw up, I lose the people most important to me. I get scared of losing before I actually lose, it’s such a shitty part of me. It’s just so fucking stupid.

I can’t focus. The meds are making me especially sick, and my head’s somewhere else.

It’s been weeks, weeks and weeks since I’ve written here. This place is such a shadow of what it used to be, it’s such a wandering ghost. It really does haunt me. I mean, I remember just writing whatever was in my head and it felt good after I wrote. I always felt less heavy inside, and people who stumbled upon the words tended to like reading them. I’ve just been lost, really, really lost. I want to be found. Who’s going to find me?

This place reflects me, this place is empty. What’s that say about me for the last long while? Or maybe I’m not empty, it’s really more that, I’m so full of things that I hate. I have done things that I hate, things that I never thought I’d do. Horrible things that make me feel black inside. I never set out to do something bad, I don’t think that I’m inherently a bad person, but I might feel better if I were. I wouldn’t feel guilt over anything, I wouldn’t feel any empathy toward who I hurt. My soul wouldn’t feel like it’s deformed.

Given enough stress and enough loneliness, history shows that I’m going to make bad decisions. I need to not do that, maybe starting right now. Used to be, I’d just go drink enough vodka or bourbon to kill a pony. That was so much simpler, just sort of a self-destructive thing that depressed writers in particular seem really keen on. Those days I miss, comparatively speaking. This other lapse, it’s so far from the me in my head, I can’t, I cannot believe I went down that road, several times. Something really bad happened to me as a result of the last time and I earned that scar and that’s fine. I know I’m kind of rambling, writing without really showing anything. I just, I want everything to be unfucked. I want to just be a good person, I want to do good things. I am genuinely sorry to someone, I won’t repeat the wrongs again. I don’t want to carry the sin anymore.

I don’t know how it got to all this. I only want one simple thing in the entire fucking world. I feel like I’m running out of time, so fast. I’m scared.

So, when I woke up yesterday I was certain it was going to be a bad day. I had that dream, I was under the impression that my love, Monica, wouldn’t be around for my birthday, I really didn’t think anyone would be around. I was just going to go for the usual birthday dinner, hopefully get a quick tattoo and go home. I was pretty down about the entire affair, I wanted it over. Dinner, tattoo, home, done. Things, however, turned out differently

Doc Dog's Las Vegas Tattoo, Ybor City

We get to Ybor (home of Tampa’s fun restaurants, bars and tattoo shops), my mom goes ahead to see if our table’s ready at the Acropolis, this great Greek place. Apparently, the table isn’t ready, so my brother suggests we go get my tattoo real quick. We go next-door to my shop, Doc Dog’s Las Vegas Tattoo, and some things immediately strike me as odd. The front doors are wide open, then nobody comes to say, hi. This is weird because the double-door on the left is always locked, so someone in front sees me coming, they unlock that door, and I always get a “Hey, Mikey!” Generally, I don’t go by “Mikey,” but the way everyone at the shop says it is endearing, it’s not cutesy and weird. The way they say it, it’s like I’m “in,” I belong there. So, no locked door and no “Hey, Mikey!” seemed strange. Then, nobody’s behind the counter, the front of the shop is empty, my brother takes me straight to the back. Again, totally strange, but everything’s happening so fast I really only have time to think, “This is really odd.” Then I see Monica, and balloons, then people yell, “Surprise!” I’m shocked, I was completely had. Seeing Monica first, that makes me light-up inside. After two years, seeing her  after I haven’t, it still always makes my breath catch. She’s so much color, and light, and warmth. I started falling in love the moment I met her, the moment her soft brown eyes met mine, and I just keep falling. My friends who I didn’t think would be around are there, everyone from the shop, even my ENT, Doctor Padhya, is there. I feel perfect.

I so didn’t want to be without Monica. If she wasn’t there, I wouldn’t have been there either, not really. I didn’t know her not being able to make it was all part of the surprise, I just knew I felt awful that she wouldn’t. Part of me would have been someplace else otherwise, part of me is always with her. I love her so completely. We talk without words, no knows me so well. As soon as I saw her, I knew the night would be better than good.

Aside from the friends I hadn’t seen in quite awhile, it was really great having Doctor Padhya there. Almost four years ago, I almost died by way of pineapple juice, Doctor Padhya was one of the people who helped save my life. He cut the hole in my throat and he’s taken care of me ever since. I have a weird trachea, I’m not an easy patient, I know this. Whenever I need something, whenever the chips are down, Doctor Padhya makes sure I’m okay. Whenever I need anything, one e-mail to Doctor Padhya and it’s done. I really wouldn’t be thirty without him, so having him at my thirtieth birthday party felt really right. Since the trach, I’ve really needed my doctors. You can tell the ones who genuinely care from the ones who are just collecting a paycheck, Doctor Padhya genuinely cares.

The Las Vegas Tattoo Gang.

Everyone from the shop was great, Doc (the owner), and Belle (Doc’s wife, and the best piercer in town), and Colt (Doc and Belle’s son, my spectacular artist), and Fish (my spectacular backup artist), everyone. I started getting my tattoos there nearly two years ago, Colt has done at least twenty of them. I got two last night, on the house, I’ll write about them soon. They’re just good people, they let us take over the shop on a big holiday, totally welcomed everyone. From my very first tattoo there, they’ve made me feel like I belong.

I expected the night to be astonishingly bad, I just wanted to stay home and stream awful horror movies from Netflix. I’m glad I was wrong, turning thirty ended up being pretty perfect.

I think maybe 2011 might be okay, I want it to be okay. I’m thirty, there are things I want before I disappear. I often feel like such a failure, I worry about time so much, running out of it. I’ve made so many mistakes, I get scared I’ll run out of time before I make up for my mistakes, before I have the things I’ve wanted for so long.

So, I’m thirty today, and I don’t feel in good spirits.

I had this dream last night that I went for a fresh trach. They put me under for the procedure, I felt the drugs and I felt myself fall asleep, everything seemed so real. Then I started thinking something was wrong, I was someplace dark, and I kept thinking that I should be in the recovery area and I should have my computer and I should be talking to people, but I was just all alone in this unformed, incomprehensible, dark place. I kept telling myself it had to be a dream and I just had to wake up, but I couldn’t wake up. I kept trying, but I couldn’t make myself wake up. I was really frightened, if I couldn’t wake up, it had to be real. I started calling someone’s name, and calling, screaming. In all my dreams, even if I have my trach, I can still talk. That should have tipped me off that none it was real, but no. I kept calling for her in a voice she’s never heard before, but I was just alone in that dark place. I was terrified because I figured I really was dead, I’d never get to be with her again. That’s the part that scared me about being dead, I wouldn’t just wake up and go back to her. She always makes me promise to come back to her before trach changes, and I always promise.

I was so scared when I did wake up, my heart was pounding, I felt like I couldn’t breathe. She was next to me and I felt that warm, safe feeling, but not for long. I remembered she’d be gone soon, and I remembered some other things I don’t care to write, and anything that felt warm and safe went away. I just want today to be tomorrow.

I’m aware that at some point, probably soon, people are going to forget me if I don’t start writing again. I’m sure this is already starting. I really don’t want this to happen.I love words and writing, arranging words into something whole, and hopefully beautiful. I like that people read my stuff, and when someone tells me that something I wrote affected them. I don’t want to be forgotten, and I don’t want to disappear before I’ve written something of real importance, something that feels important to me anyways.  I’m just stuck, and the desire to write things, anything, isn’t in me. I’m drowning in anxiety, and fear, and a certain emptiness, and ennui. I hate these feelings, though they’re so completely familiar. The thing is, I don’t feel “lost,” I’m not lost. I know where I want to be, what I want to feel, I know everything I want. I always know what I want, I’ve never not known. This, it’s like a bad dream, and I can’t wake up. I so can’t wake up.

Still, I need to write. I need to force myself to write, something, anything, everyday. Maybe everyday. I need to try, at least.

So, right now, I’m at a La Quinta in Lexington, Kentucky, but only for another hour or two. It’s only about one hundred miles to Cincinnati, then I’m off the road. It’ll be good to get off the road, too much time for quiet reflection in a vehicle speeding toward somewhere I’m already nervous about going hasn’t been good for me. I’ve convinced myself into some pretty awful things, like, “You’ll never be anything more than you are right now, and you’re going to die a lonely failure.” I don’t always do so well alone with myself, I’m not particularly good company.

Last week was really weird, the morning I took to the road was exceptionally bad, and I’ve had too much time alone to think about all of it. I suppose I could write about the weird, but the bad I’ll just keep to myself. It’s weird when someone explains that they can no longer be your friend because you’re just too dark, they just can’t stand you anymore. That’s weird, and pretty unsettling. Maybe they’re right, that’s what I keep thinking. Maybe I just need to quit people, because I’m just too damaged. I mean, I could just pretend to be someone else, but that’s the same as being alone, except with a lot of work, constantly writing and being some character who isn’t you. I’m only genuinely close to one person, but maybe I shouldn’t be. I know she deserves way better than me. Maybe I just don’t have a home, anywhere with anyone. I hope not, but I’m almost thirty and that’s what scares me just now, that’s what’s scared me every day since I left Tampa.

I’ll write again from Cincinnati, but I doubt I’ll have figured anything out by then.

So, right now people all over the world are in Intensive Care Units (ICUs) with some sort of respiratory infection. These people usually have some sort of underlying medical condition, Spinal Muscular Atrophy (SMA), like me, or maybe Amyotrophic Lateral Sclerosis (ALS). The doctors haven’t figured out exactly what’s wrong yet, or maybe they have and it’s just really bad, these people are teetering toward respiratory failure. They’re being treated with antibiotics, but maybe the treatments aren’t working yet, or they’re just working really slowly, so of course, these people are scared. They’re exhausted, and scared, and when things start going from bad to very bad, many sign a Do Not Resuscitate (DNR) order, a piece of paper that tells doctors, “If I quit breathing, don’t put a tube down my throat so a machine can help me breathe, just let me die.” These people have girlfriends, boyfriends, husbands, wives, kids, cats, dogs, some even have beloved pet turtles. These people have good lives, but they’d rather die than be hooked to a ventilator. That’s how scared they are of needing a machine to breathe, maybe forever.

I used to be terrified of a vent, but right before I went into respiratory failure a few years ago, when a doctor asked me if I wanted to live, no matter what… I said an emphatic, YES. Since I had that experience, I might tell someone in a similar situation…

I know you’re in the trenches right now, I know you’re exhausted, and depressed, and really scared. Not being able to breathe is honestly probably the worst thing anyone can endure. I’m sure you’re so scared and tired you can’t think straight, and if that’s not enough, you’re in pain too. It fucking sucks, and I know that it fucking sucks because I’ve been where you are right now. I’ve been in the ICU, my lungs all wet and heavy, with pain to make the situation feel like an even more spectacular Circle of Hell. I was terrified of dying, but I was also terrified of living and being miserable. I was afraid I’d never go to another movie, or hop another plane to someplace beautiful, or make love to a woman ever again. I’m sure you’re thinking similarly yourself just now. I know you’re scared that that’s what having to be on a vent will do to you. I was terrified in the same way. I was afraid they’d cut a hole in my throat, connect me to a vent and that’d be the end of everything I ever wanted, still, I let it happen. I stumbled head first into my worst nightmare. You know what though? When I actually got there, it wasn’t that bad.

If you have to be on a vent, let it happen. Go with it. Once you’re breathing right, and you’re not nervous ALL THE TIME, you’ll be amazed how much clearer your head will feel. Once you’re breathing right, you can rest and get your strength back. You’ll start to feel like you again. You can take your pain meds, get lots of sleep, you’ll get proper nourishment, and before you know it you’re back to your old self again. All that bad stuff I was scared of, none of it actually happened, and it won’t happen to you either.

You’re allowed to be tired, and scared, and even pissed off at God if you feel like it, but the one thing you absolutely cannot do is give up. You have a family who loves you and needs you. You have too much to live for to be signing some stupid DNR. Fuck DNRs, you have way too many good things ahead of you, don’t give up on them.

Part of me doesn’t understand why I’d have to write that at all, why a person wouldn’t fight for absolutely every second with the people they love. I have, and I know I will again, and I know that one time I’m going to lose no matter how hard I fight, but I’m going to fight it out anyways. In my heart, I don’t understand why people give in.

Intellectually, I know that society as a whole isn’t particularly encouraging on the subject of living with hoses and tubes. People don’t even like to talk about it, they just know it is awful. In pop culture, films like Million Dollar Baby tell people suicide is definitely the way to go. The Diving Bell and the Butterfly shows people this fellow whose life is tragic and beautiful in a sad sort of way, this fellow who ultimately dies in this horrific, yet noble fashion. Because, you know, we disabled people with hoses and tubes are all tragic, and sadly beautiful, and noble. It’s based on a true story, but it’s unfortunate to me that it’s the only kind of story that seems to sell. Oh, and that doctor who saved me, a few minutes before he told my mom to let me go. He said, “He wouldn’t want to live like that,” and in a moment of exhaustion, she thought maybe he was right. Fortunately, I was awake, and my mom told this doctor that it wasn’t up to her.

I know DNRs can be valid, terminal illness is going to end badly one way or another, but I think far too many people sign them under the false perception that breathing through hoses and eating through tubes is a fate worse than death. The medical system isn’t exactly nurturing on the subject. No doctor ever sat down with me and talked about how life would be very different, but I could still be me again. Doctors tend to have very low expectations in this situation. I just happen to be ridiculously stubborn, which kept me going.

The thing is, it’s really not the end of everything, technology and supports can provide a good life. Computers offer communication, ventilators are totally portable and reliable, restaurants will absolutely blend food that can be sucked into a syringe and pushed into a feeding tube. I eat out all the time, I have a glass syringe that feels swanky and eccentric. It’s not eating like it used to be, but the conversation with whoever I’m with is always good, and I’m still satisfied at the end. I travel. Last Summer, a friend and I, and an assistant, took a train to New York City. We spent a week in Manhattan. I get to fall asleep at night with the woman I love, with this woman who loves me and would never want me to quit fighting to come back to her. Nobody told me any of this was possible, I just knew the things I still wanted and I didn’t stop until I had them. The things that I want now, I’m going to chase them down too. Who knows if I’ll have them or not? I don’t know, but I believe they’re possible. That’s the story I’m pushing, a story of ultimately believing blindly in possibilities, a story of trying everything, no matter the degree of stupid or crazy.

This life isn’t always easy, sometimes it’s absolutely fucking difficult, but I don’t regret telling that doctor to do whatever he had to do. I don’t think a person should throw away their life because they’re afraid to experience something they’ve never tried, afraid because nobody ever tried to tell them that living could turn out awesome too.