My Whole Expanse I Cannot See…

So, last night I got tattoo #54. I have at least posted a picture for every tattoo, except one… and now, two. Tattoo #54 is another that’s completely, totally mine. It’ll never get posted here, and the few people who will see it, they never get to know what it means, nobody does. Certain words don’t get seen, certain stories don’t get told. It’s from a really pretty, yet really raw, Nirvana song that no casual fan would know.

The only down side to this is that my friend, Dani, did the tattoo and nobody gets to see her work. She bought her own machine, gear, lugged it all to my place. She’s been asking for awhile to save one tattoo for her, so I did. I usually have everything done at Doc Dog’s Las Vegas Tattoo, but I think they’ll dig the idea of letting a budding artist have some practice. Dani’s really talented, has artistic mind, so I wasn’t scared she’d butcher me. I knew she’d do the words justice, and she did, it’s great, so I feel bad keeping it hidden, but she understands the whys.

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. الروليت الامريكي

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. العب بلاك جاك 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. كيفية لعب بوكر I’m still here, I’ll keep writing about right now.

I don’t know what to write just now, I don’t think I have anything interesting in my head. Sometimes if I just start writing, something interesting spills out, but I don’t see that happening tonight. I’m not feeling very dynamic.

I went to the mall, picked up some shirts at Express, one blood-red that’s a little shiny. I’m a big fan of shiny shirts.

I don’t know, my head’s somewhere else.

My closet

It’s not particularly exciting, really, it’s a rather dull thing to write about, nevertheless, here goes. We organized my closet today, bagged a bunch of shirts for Goodwill, hung the rest nice and pretty. Lauren (my assistant) is a spectacular organizer, which I like, I like things pretty. I love throwing “stuff” away, I’ll never end up on Hoarders, I don’t keep socks from when I was seven because that’s the day Elmo, my gold fish died, and so I don’t want to forget him. “Stuff,” I enjoy tossing, it’s freeing.

I keep words though, I have e-mail from 2003, I can’t trash that like “stuff” in my closet. I have first e-mails, last e-mails, from people who are gone, people I don’t want gone. I never go back and read any of them, I wouldn’t feel anything happy, but I can’t lose them. They’re things that happened, perfect little pictures of places I wanted to stay, so I keep them. I’ll never not keep them. “Stuff” isn’t important, not like words, not ever as important as, “Goodnight, I love you…”

So, I keep the words, everything else can burn for all I care.

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.

I’m really not okay just now, I don’t know how to not feel this. I screw everything up. I don’t try, I just always seem to, and I deserve alone.

So, I get these ideas, just weird, maybe a little eccentric, ideas. Like, a few years ago I decided to try to see every After Dark Horrorfest horror movie, in the theater. I made it to seven of the eight. Then, a few weeks ago, the gun range thing. I don’t know, I guess I like creating a to-do, then doing it. I do things especially when the rest of my life feels out of my control, I grab at something I can control, I get a thing or do a thing, just to show myself that part of me still alive. It’s, I don’t know. I suddenly don’t feel like writing more.

Anyways, we baked a cake today. Lauren (my assistant) and my friend, Dani, did the baking, while I took a more supervisory role. It was fun, and created something.

Now, pictures…

Lauren prepares a mellow vanilla icing

Introducing... batter!

Law & Order: Special Cakes Unit

It looks like Dani’s interrogating Lauren for some kind of cake-related felony…

Dani and Daisy and Lauren and Flour

Dani, Lauren, and the finished cake... rendered in water colors

Sure, I dabble in water color painting… or I just bought Sketcher on the Mac App Store. One or the other.

We did a yellow cake with vanilla icing, topped with fresh strawberries. It came out really pretty, which is everything one wants. We all just want something pretty.

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.

It would have been better for everyone had that trach not gone in, technology fails again.

I just screw up, it’s all I do. لعبة فلوس I don’t mean to, I try to do what everybody wants, but I always just fuck things up. That trach shouldn’t have gone in, the alarms should have just kept going.