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.5 comments
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.12 comments
I can’t sleep, nothing, absolutely nothing feels good.
I have nightmares, so many nightmares, they don’t stop anymore. I wake up exhausted, like I didn’t sleep at all. I wake up feeling like I can’t breathe. Sometimes I know why, sometimes I don’t. Being awake’s a nightmare too, I don’t know which is worse. I deserve it, it’s not like I don’t.No comments
I’m too screwed up, and nervous, and lost, and alone right now. I’m so lost, so alone. I can’t think straight or write straight, or DO ANYTHING. I knew it’s all my fault, I accept that, no other way to see it. I’m a worthless waste. I ruin everything.
I won’t be writing.No comments
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.No comments
So, I’ve been admittedly kind of lost for awhile. Just look at my general lack of writing, I clearly don’t know what the fuck I’m doing much of the time. A year ago, the road felt so much clearer. I wanted this, and this, and this, and then I’d be happy. It’s difficult when you have this plan, this map of your life, and that plan doesn’t work, and that map catches fire, and you pour vodka on it trying to put out the blaze. You end up lost because you only had one answer to the question, “Well, what would make you happy?”
This all sort of hit me one day when my favorite Indigo Girls song, Closer to Fine, came up in my shuffle. Life doesn’t have just one answer for every question, and the sooner you figure that out, the sooner you open yourself up to everything if something else isn’t working, the closer you are to fine. Hence my thirty-eighth tattoo.2 comments
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.No comments