My Whole Expanse I Cannot See…

I formulate infinity stored deep inside of me…

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So way behind…

July 23rd, 2018 | Category: Life

I’m so way behind in my writing, it’s fucking ridiculous. I have, like, 15 tattoos I haven’t posted. I don’t even think I have goddamn pictures of some. I’m vexed, at myself, at others. This is supposed to be a something like a live memoir (as there’s other non-memoirish writing), and I’m not memoiring, or othering . Apathy, depression, ennui, whatever, the lack of writing is my fault. I just have to make myself write until something clicks or sticks or whatever voodoo happens to us writers who aren’t hearing the words.

Also, I have to move the blog to a new server, otherwise the blog goes dark.

3 comments

Really uneasy

October 13th, 2014 | Category: Life

Tonight, I’m just really uneasy, I’ve been so all day. I had bad dreams last night. worse than usual.

I miss someone a lot. I miss her so much, it feels like weight on my chest. She’s so far away, and it’s my fault. I did it on purpose, but I so don’t want it, I’ve never wanted it. What I want is to wake up next to her every morning until the zombies come, until I quit breathing.

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Tattoo #78

August 17th, 2014 | Category: Life,Opinions,Tattoos,Thoughts on Music
Tattoo by Colt, Doc Dog's Las Vegas Tattoo, Ybor City

Tattoo by Colt, Doc Dog’s Las Vegas Tattoo, Ybor City

So, this tattoo, my seventy-eighth, is from an Elliott Smith song, Pitseleh, off of one of my favorite records, XO. It’s a wrap-around tattoo that’s pretty much impossible to photograph. I’m pretty much out of flat open spaces, so my leg had to do.

It reads:

“They say that God makes problems just to see what you can stand before you do as the Devil pleases… Give up the thing you love.

No one deserves it.”

To me, the lyrics are saying, it seems like God pushes, and pushes, and pushes, until you break and make decisions that make life even worse.

The last few years have felt like this, but I don’t literally believe it’s God’s fault that absolutely everything in my life has gone to Hell. 1xbet شرح موقع Really, sometimes bad things happen for no reason, and sometimes when life turns sideways, we break, we make bad decisions, and our own stupid decisions wreck our desires. It’s not my fault the state of Florida destroyed my independence, nor is it my fault I had to move and leave the room I spent nine years crafting, but it is my fault I lost the woman I love. العاب على النت Bad things happen, we have a vast capacity to make everything worse. God doesn’t go around sticking it to people. Still, I think that that’s something people of faith worry about, especially we with Catholic backgrounds, though not practicing. We wonder, My life is shit. Does God just hate me? I’ve had the thought often enough, when it seems like life goes the opposite of all my prayers. Tivoli once wrote me, after I died but didn’t, and I was scared of losing Sara, “I still don’t believe God hates you, but I’m beginning to think He likes fuckin’ with you.” God hating me has always been just one of my host of worries, but not a belief (usually). طريقة المراهنات في كرة القدم

So, why the tattoo?

Because I think the words are beautiful and I like having them with me. Because if I manage to dig out of the hole I’m in, the words will remind  me of how deep the hole was, how far I had to dig to find someplace beautiful again.

2 comments

Today’s the 4th of July…

July 04th, 2014 | Category: Life,Random Thought

Every year, today, I listen to Aimee Mann sing 4th of Julyand every year it sounds truer than the year before. There’s a line that I’ll likely get tattooed on me before I’m done…

“It’s one of my faults that I can’t quell my past, I ought to have gotten it gone…”

That line hits me, all I want to do anymore is to go back, which is absolutely the worst kind of want, a completely impossible want.

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Tattoo #70: For Tivoli

September 16th, 2013 | Category: Life,Tattoos
Tattoo by Fish, Doc Dog's Las Vegas Tattoo, Ybor City

Tattoo by Fish, Doc Dog’s Las Vegas Tattoo, Ybor City

So, this is probably the most difficult post I’ve ever decided to write. I don’t really know where it’s going to go, or how it’s going to go where it needs to go. I just know that it’s something that needs written. This post isn’t just about a tattoo, it’s about a person, the most important person I ever met.

My very first assistant was a woman named, Tivoli, Tivoli Jada O’Neil. Except for in high-school, and only while at school, I’d never had an assistant before, I didn’t leave the house without family. After high-school, from 1999 to 2005, I didn’t have any friends that weren’t online. I didn’t end up going to college. My brother graduated high-school and his life kept going, while mine stopped. I was a very typical disability cliche. I was very bored, and very lonely, and I hated it. I wanted more, I wanted everything my brother had, friends and a girlfriend and going to movies and going to bars and and and, a thousand things, a thousand ands. I had desire without the means to experience any of that desire. Then old-school Republicans in Florida (not the deranged ugly-hearted kind that we have today) passed some laws and funded some programs, and all of sudden, I was interviewing for my first assistant. This was when I met Tivoli.

I don’t think people understand why having an assistant is so different, so freeing, even before the leaving the house phase. Family would take a bullet in the face for you, they love you always, forever, no questions asked, but… they have things to do. If family is turning my head, putting my hand on my chest, moving my hand off my chest, cleaning my glasses, feeding me Jell-O (back when I could still eat Jell-O), any of the twelve zillion things I can’t do for myself, it means that they aren’t doing something they want to be doing. I feel this and I feel… bad. I don’t want to be annoying, put anybody out, I don’t want to be in the way. Obviously, my mom would never say or even think I’m in the way, but it’s family. You’re always going to get, “Turn that music DOWN!” or an annoyed, “Can you wait? I’m on the phone!” As an adult, you just don’t want to hear those things, or the variations of those things on a daily basis. You’ve not nine, you don’t want to feel told what to do. You want to feel the independence of adult-hood. An assistant gives you that feeling. You’re paying someone for a service, their job is to do those things that might otherwise make you feel like a bother.

As I said, I’d never had an assistant outside of school, I didn’t realize how much my world could expand. At first, I just thought I had someone to hang out with so my mom could go places without having to drag me with her. I wasn’t wrong about that part, I didn’t have to go to my mom’s doctor appointments, the grocery-store, disability advocacy meetings, I wasn’t leaving the house yet, but life felt different.

I still remember Tivoli’s introduction e-mail, she said she could be everything from a personal chef to proof-reader, but I shouldn’t ask her to be my hair-stylist unless I wanted my head to look like some kind of topiary. I don’t remember any other applications, or even the other applicants. I interviewed Tivoli first, everyone else was gray compared to her shininess. She was very funny, and I could just see in her cheerful green eyes that she was very smart, which only became obvious after talking with her for a few minutes. She didn’t act at all nervous around astonishingly disabled me, she didn’t talk s-l-o-w-e-r and LOUDER as people often do when first meeting me. Her basic “hire me” pitch was, “I will do anything you need me to do.” She didn’t know what anything might be, and really, neither did I, yet I totally believed her, totally believed in her. I’d only known her ten minutes, but she gave off this air of complete blind confidence, I couldn’t imagine not trusting her. I interviewed the other applicants because I scheduled them and they showed up, but I knew I  wouldn’t meet anyone better… and I didn’t. I e-mailed Tivoli that evening asking if she could start the next day. She did.

For the first time in six years I had someone to talk to (I could still speak back then) who WASN’T online, someone absolutely brilliant, who could make me laugh like nobody ever had. We’d talk about music, art, religion, books, movies, we liked all the same things. We had the same dark sense of humor, we both liked religion, but weren’t religious, we liked weird fiction. We always spent at least half our day listening to music, Aimee Mann, Nirvana, she introduced me to Tori Amos, the Pixies, then we’d switch to watching vampires, zombies, a Christopher Guest comedy, or something serious and weird like, Magnolia. We’d write each other long e-mails after work, on the weekends, continuations of conversations, totally fun, new tangents, or things like, how the rain looked falling against our distance separated windows. We loved each other’s words, ideas. She’s the first person I’d ever really opened up to, completely. I told her my passions, all the things I wanted, things that scared me, I told her everything. I wanted her to know me, the me who felt very alone and very sad much of the time, the me nobody else knew. I wanted her to know everything because if she did, and she didn’t run away screaming, maybe she really did care about me, maybe she wouldn’t just disappear.

Weeks went by, Tivoli didn’t politely quit, find a new job, she stayed. She only wanted to know me more.

I’d just started getting serious about writing, and nobody had ever encouraged me to write like Tivoli. Every idea I had, she’d tell me to write it. She’d make me a cup of hot chocolate, tell me to make my music as loud as I wanted, and to write until I had something for her to read. I was writing a lot, almost every day, and she’d read it all, aloud, exactly the way I heard it in my head. She’d never tell me anything was bad, she’d only praise the strong parts. She knew I knew what didn’t work. She knew that I’d get better given the time. She had a genius-level I.Q. and was extremely well-read, she could have gutted everything that was weak, but she didn’t. She’d only smile, a beautiful, genuine smile, and tell me, “You have to keep going with this, it’s so good.” I think back then, I wrote solely for that smile. In almost no time she was the best friend I ever had, and this stuff was just the beginning.

Aside from hanging out, having fun while my mom ran errands and what-not, Tivoli was learning her job. She was learning how to do all the things I needed throughout the day. At the time, I only wore a mask over my nose to help me breathe; a mask connected to a hose connected to a machine that pushed air into my lungs. The mask attached to my nose by way of these crazy velcro straps that went all around my head. I could go an hour-ish without the mask, unless I was talking a lot, or if I started feeling short of breath and started to panic, which I could easily do. I was always scared I would quit breathing before anyone noticed I had quietly died. I couldn’t speak loudly anyway, short of breath I sounded a whisper. At home I just always wore the mask. Tivoli learned the mask, the crazy stapes, the machine. She learned all the mundane, sometimes awkward things that keep one from resembling a hobo. Once I explained something to her, I never had to explain it again. Tivoli learned everything very fast, she did everything perfectly. None of my early impressions were wrong, none of that early trust misplaced. She backed up all that blind confidence, I knew that I could trust her with my life, which I definitely had to do because… I wanted us to start going out, just us. I asked her what she thought about it, if she wanted to try it. I knew she could do it, but I’d never asked that of anyone, it wasn’t in my very tiny job description. Maybe she’d simply say no. I didn’t know. Before I had time to wonder another second, she said, “Yes, totally, we’ll have fun!” She said, “When do we start?” That was Tivoli, she was never afraid to do anything. She wanted me to experience everything I dreamed of, but couldn’t, as nobody wants to go on their first date with their mom.

Tivoli helped me experience so many firsts. The first place we went alone was Barnes & Noble, it was close to my house, and quiet, a good test run. I bought her my two favorite books, The Etched City by K.J. Bishop and Veniss Underground by Jeff VanderMeer, both of which we would discuss for weeks. It was just a dull chain-bookstore, but I’d never been happier to be anywhere. It was like landing on the Moon. It was independence. After that night, the world was wide open. We bought my all black wardrobe, the first time I’d ever tried on and picked out my own clothes. We went to lots of movies, but the first was really unique, MirrorMask. We went to a weird sci-fi convention. For some reason, someone was dressed as a box of Corn Flakes, because, you know, sci-fi, Corn Flakes… Yeah, we didn’t get it. We went to get my very first tattoo, the luna moth that everybody calls a butterfly. I could do an entire post just about that night. I never felt nervous not wearing my mask when we went places, did things, Tivoli always seemed to know I needed my mask right when I needed it, so I never got short of breath enough to freak out. I think that feeling of abject safety gave me what I needed to try something that seemed so not possible before all this unfettered independence… Dating.

Tivoli gave me the confidence to post that fateful craig’s list personal ad which led to a date, my first date, with Sara. Sara my first love, my first kiss, my first night in someone else’s bed. I could do an entire post on those things too.

Tivoli was my assistant for roughly eight months, eight months that showed me I really could have everything I ever wanted, disability means nothing. I can have anything in the world, so long as I have access to the world. Tivoli gave me that access and showed me the magic I could accomplish with it. Tivoli was fuckin’ awesome, I think that’s how she’d want me to describe her.

A few months ago, I really wanted to talk to Tivoli. I wanted to tell her about some things that were happening, I wanted to know if she was okay. I really wanted to tell her how much I missed her and how much she meant to me. I don’t know why, I just really wanted to say things, everything. She moved away in early 2006. Right after she left, we e-mailed like usual, but the distance slowed everything. Mostly it was my fault, I was so focused on independence, hiring new assistants, trying to build a life with Sara, which I really believed would happen. Then I spent two months in 2007 in the ICU, after I died but didn’t. Sara left twice, the second time forever. I was self-hospitalized for depression after Sara left. My facial surgery, trach problems, sinus problems. Losing my assistants all together. New love, love lost, the hope of finding it again. It’s been a bizarre eight years. None of this is an excuse, it’s just what happened. I have thought about Tivoli every single day, but I didn’t talk to her as much as I meant to, I just thought I’d always have time.

I e-mailed Tivoli to say what I wanted to say, and to just start talking again, like we used to talk. Months went by, no reply. It was weird, we ALWAYS replied to each other, even just once a year, just to say, “Happy birthday!” I thought maybe I’ll find her on Facebook, and I did, but the first thing I saw on her page was, “Happy birthday in Heaven!” I immediately felt scared, the only thing I could think to do was Google her obituary, if I didn’t find it, what I saw was just a sick joke and she was just super busy. Then I saw it, three results down, Tivoli really was, is, gone. I just started crying. Time didn’t care that we still had things to say.

I don’t really know what else to write. It hurts every day. I miss her every day, no matter what’s going on in my life. I still cry every day, usually at night, when it’s dark. I don’t know when that’s going to stop, maybe never. I’ve cried a lot just writing this, I don’t understand why I’m here and she’s not. I feel like, if we had talked like we used to, maybe her life would have been just different enough to avoid the accident that took her away. She was so good to me, and I wasn’t nearly good enough to her later on.

I love Tivoli so much, I love her with every breath I take. I never got to say it one last time, but I hope she knew it.

Tivoli’s always with me, in my heart, and on my skin.

17 comments

Tattoo #62

November 26th, 2012 | Category: Life,Opinions,Tattoos,Thoughts on Music

 

Tattoo by John, with typo correction (my fault) by Colt, Las Vegas Tattoo, Ybor City

So, this tattoo is from an Aimee Mann song, Looking for Nothing, off her gorgeous record, @#%&*! (Fucking) Smilers. Looking for Nothing is my favorite song on the record, it’s a really beautiful piece of writing. To me, it perfectly describes what it’s like to be surrounded by people, and feeling completely lost, not walking through life so much as drifting. Every-day is the same, nothing to look forward to, nothing that even hurts. Life without pleasure or pain, happiness or sorrow, passion or even anger. All you have is nothingness. You’re not dying instantly in firry car crash on your way to romantic night with your love, you’re dying by inches, over years, because you have absolutely nothing to live for, nothing to drift toward. When you have nothing, and nothing to reach for, you die from that LACK of motion.

For the last year-ish, I could relate.

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Updateses

April 21st, 2012 | Category: Life,Opinions

So, first off, I’m a… persistent person. Or stubborn. Or persistent. Or persistently stubborn. The point is, once I get something in my head, I don’t just let it go. I lost a BUNCH of movies, it was my fault. I deleted them, stupidly. I was able to convince Apple to let me re-download the 300ish that weren’t in the Cloud, but some, too many, just aren’t available anymore. Apple can’t restore movies they stopped selling. Everything in my last post, no longer available. It was upsetting, at least to me. They were mine, my movies. I collected them, moved them from hard drive to hard drive. I watched a few of them alone, in the ICU way back when, after the pineapple juice that killed me but didn’t. I watched some crazy and happy in love. A few, I hadn’t even watched yet. Harvey, May, they really upset me. I’ve seen them so many times. I have essays in my head, unwritten of yet, about Harvey and May. Predators, okay, nobody liked Predators, but for some reason, I’m not in that nobody category. I think it’s a blast. It’s fun, and Adrian Brody quotes Hemingway! How can you go wrong with fun and Hemingway quotes? You can’t! I didn’t want to lose these movies, my library forever incomplete. I want to thank everyone who offered to send me DVDs, it was very nice. Unfortunately, I’m weird, and a snob. DVD rips just aren’t the same, and that wouldn’t fix the HD issue. Besides, even with DVD rips, or even if people had sent me actual iTunes files and I SOMEHOW broke the DRM (which was REALLY unlikely), those movies wouldn’t have been MY movies, the files I collected and stupidly deleted. Like I said, I’m weird.

At any rate, these missing movies were a real problem for me. I was so mad at myself. I know they’re just digital files, but the sense of loss, and that it was my fault… I was just really upset. I don’t expect anyone to understand. Everyone here thought I was crazy. I just couldn’t let them go. I didn’t let them go. I won’t get all boring and technical, and talk about how you can’t use data recovery software on wirelessly mounted network drives and how I got around that issue, I’ll just say that, I did. After over 90 hours and three different data recovery software packages, my movies are back, safe and sound. Persistence paid off.

In other news, speaking of the ICU, I just spent a week in there. It was was a really bad, possibly the worst hospital experience I’ve ever had. I’m done writing anymore about it, just thinking about it still bothers me. I’m out, that’s that.

3 comments

Self-pity? No. Self-loathing? Sure!

July 22nd, 2011 | Category: Life

So, I got this beautiful comment from a reader right here in Tampa…

mike, i don’t think you are so tough.  we are all dealt the hand we are given in this life:  so what?  deal with it.  be thankful that such HUGE resources were dedicated to keeping your ass alive.  under any obamacare-style healthcare rationing you wouldn’t have the shelf-life of a hard-boiled egg. quit wallowing in self pity and live your fucking life til you die

Where to start? The child-like grammar? The “”Obamacare” non-sequitor? The general warmth of the writing?

I wonder if the person knows how to read, at least at the proficiency of a toddler, or understands the definitions of certain words…

I mean, I know I’m not tough, or brave, I’ve written about it before. Tell me something I don’t know.

I’ve also written many times that I’m thankful for everyone who keeps me alive, for my assistants, for all my technology, just for life in general. I’m really very lucky, and blessed, I’ve written, and genuinely meant all these things. So, again, not sure where that came from.

I write about a lot of things here, including being very down. I write about fearfrustrationlonelinesssaddensoptimismromancesex, zombies, sex AND zombies, I kind of cover  the gamut of human (and undead) experiences.  The one thing I don’t think I write about is pity, not in my life, not in my fiction. You could say a lot of things about me, but self-pitying really isn’t one of them. Self-loathing, absolutely, I’m definitely not someone who unceasingly likes himself or regularly pats his own back. If anything, I take personal responsibility for everything, for every failure, for every mistake. Do a search of the blog for “my fault,” see how that goes. I even blame myself for things that probably aren’t really my fault. Like, one time, it started raining rather hard, rather abruptly, and Lauren (my assistant) got caught in the torrent getting me and my stuff into the house from the car. She looked like a kitten who just climbed out of a swimming pool. She covered me with a blanket, she’s good like that, I was fine. So, I apologized. If we’d left the coffee shop fifteen minutes earlier like I originally planned, we’d have beaten the weather and Lauren wouldn’t have gotten unexpectedly drenched. Really, I couldn’t see outside, I, like most people, don’t have one eye always on the doppler radar, and I definitely didn’t stay the fifteen minutes knowing what would happen. Still, I felt responsible and I apologized. Self-loathing, self-criticism, that’s me. Self-pity’s like, “Why’d God build me so broken? Why are all these bad things happening to me? What’d I do to deserve this? Make it stop!” Thoughts like those don’t cross my mind, I really had to think about the definition of self-pity just to write those examples. I just don’t think that way. I really don’t see how someone could read this blog and say I wallow in self-pity.

As for dreaded “Obamacare,” yes, and under Obamacare, if your adorable grandma breaks a hip, her doctor will take her out back and shoot her in the face. I’m so sick of people saying stupid things about the health care bill. Stop being stupid.

I am living my life. I  keep breathing, and doing, and writing. I’m just writing what I feel, honestly and in the moment. The thing is, I write all my moments, dark and sunny, I don’t see how feeling darkness for a spell equates to not living my life.

12 comments

I want to go home

July 12th, 2011 | Category: Life

Nothing feels good, I’m all kinds of scared. I hear rain outside, tapping at my window, making it so I can’t not think about someone, making me feel so alone. I can’t fall asleep, I’m too scared of my bad dreams. I want puppies and flowers, I want to go home. I want someone to hold me close and tell me everything’s okay now, I don’t have to be scared and alone anymore. It’s okay to sleep, “I’m right here, don’t be scared. I love you, I’m here.” I want to go home, I don’t want to keep feeling all this sad and scared  and dark.

I know it’s my fault, I know…

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Too screwed up

June 28th, 2011 | Category: Life

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.

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