My Whole Expanse I Cannot See…

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

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

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

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

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

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

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

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

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

I’m scared I’m stuck, stuck feeling like this until I quit breathing. All this dark, I can’t see through it, out of it, it’s so big. There’s always been this kind of spark in me, and it always flickers into a flame, something white-hot, whenever I fall really hard. It’s like Neo in The Matrix, he’s trapped at gun-point in this narrow hallway of a run-down hotel building, takes a bunch of bullets in his chest, stumbles backward, hits a wall, hard. He gets weak, slumps to the floor, leaves a trail of blood where he slid. I remember that scene so vividly, I see the hallway, the recoil of the gun pumping round after round into Neo’s chest. What I really remember is the sound, the thump when his back hits the wall. I see the trail of blood, like paint on canvas. Neo’s lying there, on that dirty hallway floor, dead. Dead, until he isn’t. He gets up, he snaps out of being dead, like it’s something ridiculous. His eyes look so clear, so full of purpose, and he quietly says, really just to himself, “No.” Neo decides he doesn’t have to follow the rules of that world, the Matrix. He wasn’t going to die right there in some hotel building, so far from the one person who’s his home. He fights his way back to her, Trinity, his home.

I think I remember that scene so well because I’ve experienced it. Not that I’ve ever been shot a bunch of times, only to go fuckin’ Kung Fu on the fellow who shot me, but I’ve felt complete darkness, I’ve genuinely almost died so many times. One time, I did die. I laid dead in some e.r. trauma-room for around three minutes. Still, as sad, or physically weak, or terrified as I’ve ever been, I’ve always come to that feeling of perfect clarity and I tell myself, “No.”

I’m scared right now because that clarity is nowhere.

I can’t go home.

I feel so lost.

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

Here we go…

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

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

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

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

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

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

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

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

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

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

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

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, 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.

Okay, so, I enjoy guns, guns as thing. I like the sound a rifle makes when it’s cocked, I like the sound a revolver makes when one pulls the hammer back, I like muzzle-flash, I love the cracking sound machine-guns make… Aesthetically, I love everything about guns. I don’t like how guns are a thing people use to end other people’s lives, in a perfect world we’d only use guns to put down zombies.

Anyway, I have this Things to Do list that really isn’t getting done. I’m thirty, I’m old, the list needs to get moving again. To that end, one of my things is to fire a gun with an assistive technology switch. I have no idea how this would work. Would the switch connect directly to the gun? Would the gun be fired by way of software running on my MacBook Air that I’d access by way of my NeuroSwitch? I don’t know.

Do any of you know how I might fire a gun with a switch? I really don’t care what kind of gun I’m firing, I just want to fire at some target until said gun is empty. Can anybody help? I live in Tampa, I especially totally welcome local help.

I’m still pretty scattered, but I really am trying to post every-day and if I keep doing that, at some point, I’ll write something pretty. So, that’s the plan.

Yesterday, I started a big project, well, I made Lauren, my assistant, start it. A few years ago I got lazy and quit tagging my blog posts, really, my assistant, Sarah, used to tag them and when she retired, I didn’t keep it up. Part of it was, I just missed her, and doing the tags or making someone else do them, that just made me miss her more. So, the tagging stopped. Yes, an assistant’s just an employee, but the good ones, they do get really important. I miss them when they go, there’s a real sense of loss, another person who goes. Sarah was around when my thumb quit working and I could hardly type, hardly talk to anyone, before the NeuroSwitch. People weren’t really around anyway. Sarah was around though, so we’d go to lunch, at night we’d go to the bar, we’d alphabet conversations. She was good with the alphabet and smart to talk with, so she kept me sane when I really needed it. Sometimes, sitting at the bar, with a vodka tonic and ten dollars worth of Elliott Smith in the jukebox, I’d alphabet flash stories that she’d type up after. She was around for twenty-ish tattoos. She stopped me from dying once. She was around when I really needed someone to be around. A fix for a fix, but we were close and had fun. So, yeah, when she left, the tagging stopped.

Anyway, we’re tagging again, Lauren’s off to a spectacular start. Tonight, I go for another tattoo, and then and then and then…

So, a few weeks ago, I had some sinus surgery. This did not help me, physically or psychologically. I was pretty hazy on Demerol leaving the hospital, the kind of hazy that produces thoughts like, “What if I’ve died and this is actually Hell?” For minutes at a time these thoughts seem completely true. Then, “No, shut up, don’t be stupid. You’re breathing, you’re not dead.” I remember all the nurses, Lauren (my assistant), even the parking valets, they’re all talking about how “tough” I am. They said, “Mike’s so tough.” They said,  ”Nobody’s tougher than Mike.” I never feel tough, I was busy arguing with myself whether or not I was dead and in Hell. I felt tiny, scared, old. I think people mistake quiet for tough. I’m not tough, in my head, I’m not tough. I wanted to go right back to my little room, have more Demerol and forget the pain in my face, all the scared in my heart. Though, the drugs, that’s just a fix for a fix. Drugs, liquor, either/or, they’re just a fake feeling of warm, safe, the pretend versions of a love’s touch, kiss, warm brown eyes to tell you you’re not alone. Those are real fixes, for me anyways. That’s all I ever want.

I’m still not me yet, I’m on some anti-biotics that are making me feel sick, which makes me nervous. My head’s a mess. I’ve been trying to hold it together for weeks, and obviously not.

I’ve said that I admire Elliott Smith as a writer, I think he was a genius. He’s a writer whose level of brilliance I aspire toward. He captured human experiences so perfectly, told these perfect little stories of love and loss and sadness and loneliness and addiction in just a few hundred words. Theres’s a special skill in that, no less brilliant and beautiful than the tens of thousands of words that writers like KJ Bishop, or Michael Cisco, or Jeff VanderMeer put into their stories.  It’s not easy to capture how it feels to lose someone you love, to capture it in a way that is universally accessible, in just a handful of words. Smith’s Sweet Adeline off his fourth record, XO, is a gorgeous example of describing the end of love and the aftermath of that ending.

Waiting for sedation to disconnect my head, for any situation where I’m better off than dead.

He felt that, put it into words, perfect words. It’s how I feel right now, and a thousand times before right now, and probably a thousand times after right now.

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.