My Whole Expanse I Cannot See…

It’s finished!

It’s not finished!

I could put down a bunch of words, but they wouldn’t do anything, or mean anything, or change anything. Or I could put down a bunch of violets. Violets violets violets violets violets violets violets violets violets violets violets violets violets violets violets violets violets violets violets. Either way, it’s the same affect, no matter the words. Whatever I put down is passionless, pointless.

So, I’m back from Cincinnati.

I just want to amend something from my last post. Saying I shouldn’t be thirty, I didn’t mean that literally, or mean that I don’t think I should be thirty. It was just rambling based on doctors a long, long time ago saying I probably wouldn’t tun one. I was being melancholy, introspective, but definitely not literal. I AM thirty, and so, there’s no should or shouldn’t. Like I said, I wasn’t really articulating well.

So, I’m flying to Cincinnati in a few hours, like, seven hours from right now. Their going to re-measure my trach because it’s still not right, but that’s not even the main reason I’m going. They asked me to come back because the doctors at Cincinnati Children’s Hospital had never seen anyone with SMA Type 1 at the age of thirty, they didn’t even believe the diagnosis. I couldn’t have SMA Type 1, it had to be Type 2, or 3, or maybe something else altogether. People with SMA Type 1, they don’t go twenty-seven years without being trached, if they see twenty-seven at all. Well, even though I don’t fit the diagnosis, at all, fancy genetic tests proved that I definitely have SMA Type 1. Maybe I’m some sort of SMA Missing Link, I don’t know. They’re going to run a bunch of tests and study me.

I just feel really weird, for lots of reasons I’m more uneasy than the last time I went to Cincinnati. I’m thirty, I shouldn’t be, but I am. I don’t know, I can’t articulate it just now, but I feel like such a failure.

So, I’m not entirely not writing. Us Mac people recently got the Mac App Store, it’s built into OS X and it’s a one stop shop for buying Mac software. It’s basically just like the iPhone App Store, click, buy, run.  Anyway, the day the store opened I HAD to try it, I get ridiculously excited about these things. The first app that caught my eye was Evernote, it’s this cloud-based notebook app. You can create different notebooks for different subjects, like, I have “Thoughts,” ” Writing fragments,” “Dreams…” All your notebooks are stored online, so you have access to them on practically any computer, or smartphone, anywhere. It’s a really stylish, easy way to turn thoughts into words that you can always keep with you. You can also create shared notebooks that people can read and even write collaboratively. I totally hadn’t planned on writing this little review, I just think Evernote is so fucking cool.

I love the idea of writing in notebooks, pouring thoughts onto paper, it’s very romantic. It’s also something I’ve never been able to do. Aside from blogging, I’ve never kept any sort of notebook or journal. I mean, if I have a little one paragraph thought that only means something to me, I’m not going to blog it, and I’m not going to save it as a single text file. Before Evernote, that thought would simply fade until it disappeared. There are also thoughts, no matter how invested I am in transparency, that I just can’t share right now. Evernote lets me keep all my thoughts in a nice safe place, to be shared, or not. That’s where I’ve been of late.

I’ve really hit a creative, just everything, every part of me, low. I’m so low, or as Tori Amos would put it, way down. I’m supposed to be better than this, I was anyways. Maybe I’m just not, anymore. Who knows?

So, when I woke up yesterday I was certain it was going to be a bad day. I had that dream, I was under the impression that my love, Monica, wouldn’t be around for my birthday, I really didn’t think anyone would be around. I was just going to go for the usual birthday dinner, hopefully get a quick tattoo and go home. I was pretty down about the entire affair, I wanted it over. Dinner, tattoo, home, done. Things, however, turned out differently

Doc Dog's Las Vegas Tattoo, Ybor City

We get to Ybor (home of Tampa’s fun restaurants, bars and tattoo shops), my mom goes ahead to see if our table’s ready at the Acropolis, this great Greek place. Apparently, the table isn’t ready, so my brother suggests we go get my tattoo real quick. We go next-door to my shop, Doc Dog’s Las Vegas Tattoo, and some things immediately strike me as odd. The front doors are wide open, then nobody comes to say, hi. This is weird because the double-door on the left is always locked, so someone in front sees me coming, they unlock that door, and I always get a “Hey, Mikey!” Generally, I don’t go by “Mikey,” but the way everyone at the shop says it is endearing, it’s not cutesy and weird. The way they say it, it’s like I’m “in,” I belong there. So, no locked door and no “Hey, Mikey!” seemed strange. Then, nobody’s behind the counter, the front of the shop is empty, my brother takes me straight to the back. Again, totally strange, but everything’s happening so fast I really only have time to think, “This is really odd.” Then I see Monica, and balloons, then people yell, “Surprise!” I’m shocked, I was completely had. Seeing Monica first, that makes me light-up inside. After two years, seeing her  after I haven’t, it still always makes my breath catch. She’s so much color, and light, and warmth. I started falling in love the moment I met her, the moment her soft brown eyes met mine, and I just keep falling. My friends who I didn’t think would be around are there, everyone from the shop, even my ENT, Doctor Padhya, is there. I feel perfect.

I so didn’t want to be without Monica. If she wasn’t there, I wouldn’t have been there either, not really. I didn’t know her not being able to make it was all part of the surprise, I just knew I felt awful that she wouldn’t. Part of me would have been someplace else otherwise, part of me is always with her. I love her so completely. We talk without words, no knows me so well. As soon as I saw her, I knew the night would be better than good.

Aside from the friends I hadn’t seen in quite awhile, it was really great having Doctor Padhya there. Almost four years ago, I almost died by way of pineapple juice, Doctor Padhya was one of the people who helped save my life. He cut the hole in my throat and he’s taken care of me ever since. I have a weird trachea, I’m not an easy patient, I know this. Whenever I need something, whenever the chips are down, Doctor Padhya makes sure I’m okay. Whenever I need anything, one e-mail to Doctor Padhya and it’s done. I really wouldn’t be thirty without him, so having him at my thirtieth birthday party felt really right. Since the trach, I’ve really needed my doctors. You can tell the ones who genuinely care from the ones who are just collecting a paycheck, Doctor Padhya genuinely cares.

The Las Vegas Tattoo Gang.

Everyone from the shop was great, Doc (the owner), and Belle (Doc’s wife, and the best piercer in town), and Colt (Doc and Belle’s son, my spectacular artist), and Fish (my spectacular backup artist), everyone. I started getting my tattoos there nearly two years ago, Colt has done at least twenty of them. I got two last night, on the house, I’ll write about them soon. They’re just good people, they let us take over the shop on a big holiday, totally welcomed everyone. From my very first tattoo there, they’ve made me feel like I belong.

I expected the night to be astonishingly bad, I just wanted to stay home and stream awful horror movies from Netflix. I’m glad I was wrong, turning thirty ended up being pretty perfect.

I think maybe 2011 might be okay, I want it to be okay. I’m thirty, there are things I want before I disappear. I often feel like such a failure, I worry about time so much, running out of it. I’ve made so many mistakes, I get scared I’ll run out of time before I make up for my mistakes, before I have the things I’ve wanted for so long.

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.

I stare at these plank pages and I’m so fucking stuck, I’m lost. I used to be able to write and it wasn’t like carrying a sack of bricks uphill in the snow on roller-skates. The words were there, now they’re not. I hate December so fucking much anymore. I hate my birthday. I hate, ah, fuck it. I’m so fuckin’ eloquent, I know.