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’ve upgraded to WordPress 3.2, and I didn’t delete the entire blog. Yay me. I always worry that with the big upgrades I’ll accidentally wreck everything, but I still hit the upgrade button the second I see it. I love new versions of anything, the newness is always exciting.

Yes, I’m a loser.

I’m trying to decide if I want to write something rather than just post this video of Aimee Mann singing 4th of July.

I really hate today, and every year this song seems more true. Last year was good though, I was in the hospital, but it was really good. I just want to go back there, because I was with Monica, and she was there, really there. I had to get a sinus CT scan, she’s walking next to me, I couldn’t keep from looking at her. She’s like an angel, I get lost looking at her, it’s like the rest of the world just fades away. The world fades and being sick fades, and I love her so much it scares me. It’s like, how can I feel so much for one person? It’s overwhelming, it scares me because I know she could go away, there’s nothing worse than her going away. I mean, I was in the hospital, I was sick from antibiotics, my sinuses hurt, my eye was swollen shut, everything hurt, and yet I was so completely, breathlessly, unthinkably happy. I was in some shitty hospital room, but in my head, and in my heart, I was at home.

This is so hard to write. When I write I’m completely in the moment, I’m back in that place like I’m there right now. I could write that evening so vividly.

We’re alone in the room after the CT scan, the sun’s setting over the bay, beautiful shades of orange are shining into the room through one large window. Monica, more beautiful than that sunset. I want to kiss her so badly, our first kiss as an “us.” We’d been together, yet not, since the day we met, but that 4th of July we really are together. After years, we’re together. All I want to do is kiss her, the room filling with shadow as that fiery orange sun sinks into the bay. She’s so gorgeous and I know I look like shit after days in the hospital. I say, “Dear, I have a really odd question, I’m probably the only fellow who has ever, and will ever ask you this sort of question. I’m really oddly very nervous even writing this, because it is such a bizarre question, and…” She says, “Michael Phillips, you make me crazy. Just tell me!” I say, “I know my face is probably really icky, just, I really want to kiss you… Could you maybe get a hot cloth and make me less not pretty so I can kiss you? I just, I really want to kiss you. Can I kiss you?” She goes to the sink, runs some warm water over a cloth, runs the warm cloth over my face a little, gently brushes my cracked lips. She says softly, “You’re fine.” She leans in, around all my hoses and tubes and wires, leans in and kisses me, softly, slowly, our lips brushing, then embracing deeply before letting go. It felt like magic, I felt so alive. I knew even more that I honestly wanted to spend my forever with her.

Writing that hurts so fucking much, she’s so far away now.

I just want to go back, but I can’t. I want to go home, but I can’t. She doesn’t want me, doesn’t get lost in me the way I get lost in her.

I don’t know how to feel okay, She’s left before, I’ve been with someone else, but it’s not right, I just hurt that person. Part of me is always with Monica, even when I’ve tried to tell myself otherwise. It just doesn’t work.

So that’s today’s memory lane, with all the pathos and pain. Another chapter in a book where the chapters are endless and they’re always the same, a verse, and a verse, and refrain…

I’m really lost, I can’t see anything bright. I’ve practically ruined this blog, which just reflects my brokenness. It’s all so Goddamn boring.

I’d really like July to just go the fuck away, right fucking now.