My Whole Expanse I Cannot See…

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.

A Woman a Man Walked By is the result of a collaboration between PJ Harvey and John Perish, Black Hearted Love is one of my favorite songs on that album.

To me, the song is about a woman and her lover, and their intense connection to each other. My favorite line goes…

“When you call out my name in rapture, I volunteer my soul for murder. I wish this moment here forever…”

When you give yourself to someone, your skin against theirs, and you genuinely feel something deep for that person, that’s kind of the pact. You give your soul to that person, and they can do what they will with it, keep it or destroy it. This pact can go both ways, but not always, Still, the moment that pact is formed, it’s like magic, and you wish you could stay in that moment forever. At least, that’s what I take from the song.

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.

She leans over and kisses you, and it’s like lightning. You close your eyes and fall into her, or she falls into you, or maybe you’re falling into each other. You close your eyes, her lips touching yours, and the world doesn’t go black, you’re not wrapped in darkness. You’re wrapped in light, white blinding light, complete, and radiant, and so right now. You’re enveloped in this radiance, totally fucking lost in it. Her lips wrap around yours, yours wrap around hers, and with every touch the light gets hotter, even more total. Your lips brush her cheek, her neck, she grabs at your hair, pulls harder with every kiss.

Electricity flies through her and into you, burning away all the fear and loneliness that’s been enfolded around your heart for so very long. Every nerve in your body is alive and screaming. The current from her touch runs down your spine to the tips of your toes, and for this series of perfect moments you know what it’s like to feel truly happy, truly in love.

You’ll fall asleep holding her close, dazed from feeling what it’s like to be struck by lightning

I’m just going to write the thoughts in my head because I need to start writing again, and anything is probably better than nothing. Unless the anything is a bunch of boring stuff that’s really boring, so I’ll try to avoid that…

Right now, I’m thinking about someone, two someones. I’ve been in love with someone for a long time, for years. لعب روليت حقيقي Monica, she’s everything to me, nobody has ever affected me like her. We click, being with her, it’s as natural as breathing. Around her, I feel like the me in my head, I’ve never had to wear a mask to make her love me. She does love me, she loves me exactly as I am, all the shininess, and the dark darkness. I am genuinely happy when I’m with her, I feel peace. It’s just, our relationship hasn’t been a straight-line. لعبة روليت للايفون

We’ve been in love for so long, best friends who so wanted more. Getting to more, it just didn’t seem like it would ever happen. We’d get SO CLOSE, then not. It almost didn’t happen, I honestly thought I’d lost her. That feeling was probably the worst pain I’ve ever felt. I wrote things like Christmas in a park, Telling a story, The world outside is burning… There were things she thought she couldn’t tell me, for months we barely talked, let alone fell asleep holding each other. The distance was bad, and I thought it permanent, but I had no idea why.

Jump ahead to where she tells me everything that kept us apart, jump to where she tells me she loves me, she doesn’t want to be without me any longer, she wants to be “us.” Jump back to where I’d started seeing someone else because being alone just hurt too much, jump to us being together for a month, jump to me leaving her and destroying her heart. I feel awful for hurting her. She said she loved me, and was nothing but good to me, but I couldn’t stay. I knew I belonged somewhere else, I couldn’t pretend otherwise anymore. I wanted to be good to her, to love her deeply, it just didn’t work. I think I was good to her, when I left I was just honest. Leaving wasn’t easy, I did have feelings for her, I told her so.

She didn’t take it so well, somewhere on tumblr there’s a blog partly dedicated to what a disgusting “womanizer” I am. Posts about how the stuff that comes out of the hole in my neck smells awful, how I suck because I’d never be able to open a car door for her, or cook dinner, or kiss her in certain places, then she gets really harsh. She basically put everything about me that scares me, everything I’m self-conscious about, into one nightmarish paragraph. She’s apologized and took a lot of it down. She said she wrote it specifically to hurt me because I hurt her, but she didn’t actually mean it. I understand that intellectually, and I still feel awful for hurting her the way I did, but what she wrote really fucked me up. I’ve been scared that when I kiss and touch, I’m a let-down, that a woman who’s with me is missing out on too much for me to be worth it. العاب تربح اموال حقيقية Monica says that just isn’t true, that she knows certain things with me are going to be different, but that’s okay, she loves me so much, but I’m scared anyway.

Jump ahead to right now. I know I’m in the right place, I’ve wanted to be here for so long.

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

So, my thirty-fifth tattoo is from an Alanis Morissette song, Can’t Not, which is on my favorite Alanis album, Supposed Former Infatuation Junkie.

To me, the song is about how artists practice their craft in spite of criticism, scrutiny, and the pain one feels from being struck by such weapons. People who are passionate about their craft, whether it’s visual art, or music, or writing, they feel a drive to share what they create, to put it out there for anyone to take in. Sharing such creation opens one up to not only praise, but also harsh words and deep criticism. It can be painful for one to have what they create knocked and dismissed, spoken badly of, but that drive to create and share outweighs any feelings of pain that come from practicing one’s craft with absolute honesty. Creation for the sake of creation, whether anyone likes it or not. Alanis writes songs that make people uncomfortable, some just flat out don’t like her, and that dislike hurts, but she simply can’t not write those songs. She can’t not be herself and create with complete honesty.

Whenever I write about depression, or suicide, or sex, or derision toward God, fictionally or otherwise, it is likely to upset someone (especially people close to me). Honesty in writing, particularly when it comes to personal subjects, isn’t always welcome, but this is what I do and I can’t not do it. No matter how much I hate any personal fallout the things I write can cause, this is my craft and I can’t not practice it.

Really, I have something deep inside me, something that pushes me to do things no matter what. I can’t not do things like, tell a woman how completely I love her, even though she might not love me back, or look into her eyes and tell her how much I want to kiss her, to take off all her clothes for the first time. I can’t not travel and experience things, even though something could go astonishingly wrong with the machines, and hoses, and tubes that keep me breathing. I almost died going to a movie last December, but I can’t not go, and do, and be. I do things because I can’t not.

She’s all curly brown hair, soft brown eyes, eyes so beautiful you’re afraid to look into them for more than a breath, or a heartbeat. You’re afraid of getting lost in those eyes, afraid of not being able to find a way out again. You’re afraid that they’ll look into you so deeply, afraid they’ll see everything inside you and look away. You’re afraid how those eyes love you, but one day might not.

She’s an angel. She’s your warm and safe, and everything good. Her eyes are your connection to Divinity in the here and now, in this world of blue skies that fade to black and fill with stars. She’s your paradise found.

The worst torture in Hell is said to be the absence of God, the loss of connection from one’s soul to Divinity. You look into those soft brown eyes, the eyes of your angel, and you don’t look away. You know you’re already damned.