My Whole Expanse I Cannot See…

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Archive for the 'Tattoos' Category

Tattoo #76

January 30th, 2014 | Category: Life,Opinions,Tattoos,Thoughts on Music
Tattoo by Kyle, Doc Dogs's Las Vegas Tattoo, Ybor City…

Tattoo by Kyle, Doc Dogs’s Las Vegas Tattoo, Ybor City

So, the way that this tattoo wraps around my leg, it’s basically impossible to photograph, properly anyway.

It reads…

One day I know…

One day I’ll be…

Looking back on me…

It’s from a Priscilla Ahn song, One Day I Will Do, which is off of her really excellent second record, When You Grow Up. The entire record is worth buying, but I’ve gotten really fond of One Day I Will Do.

To me, it’s a song about a life that’s in a drift, and then regretting that drift. You know you could do better, could be better, but you’re not. You’re just not. You know that at the end of everything, you’re either going to to see your life as a giant waste, or as something that was good and beautiful. Knowing that one day you’ll look back across the expanse of your life and might find it lacking, could easily find it lacking, is a sobering thought, a thought that could lead you toward someplace that feels… right.

I feel like this song, I’m scared of that look back on myself. I’m scared I’ll see ruin and waste. These words are kind of a prayer etched into my flesh, a prayer to remember to be better, because at the end of me, I don’t want to look back and see the waste I’m living now stretched until my last then.

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Tattoo #75

November 22nd, 2013 | Category: Life,Tattoos
Tattoo by Kyle, Doc Dog's Las Vegas Tattoo, Ybor City

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

So, this tattoo, number seventy-five, isn’t a song lyric, or a book quote, or a film quote, or even a quote anybody would ever recognize. Still, it’s a quote that suits me, I think. It was crafted to suit me.

I have a similar quote that Ira Glass crafted for me. He was talking about me, talking about our This American Life episode. He was telling someone about how I have all these experiences during which I could die, leaving my house is kind of a dice roll, but given all that, he said I’m just “so fucking normal.” I thought that was about right, I’m normal in that I’m pretty much as fucked as anybody else. Now, what he said is permanently etched into my leg.

Well, recently I was tweeting Aimee Mann about something I wrote and I ended with, “Yes, I’m weird.” I’m weird in a lot of ways, but I’m definitely especially weird about my writing. Everything that’s typed here is first completely “written” in my head. I hear the words, I know how they’re going to fit together, then I do the final physical act of typing. I know, that sounds a little weird.

I often like writing first-person present, some people don’t dig that, but I write it anyway. That’s what I was telling Aimee, that’s what ended with, “Yes, I’m weird.” That’s what garnered the reply that’s now permanently etched into my stomach…

“…just weird enough…”

I liked that, I’ll happily wear that label until time wears it away.


Tattoo #74

November 21st, 2013 | Category: Life,Opinions,Tattoos,Thoughts on Music
Tattoo by my man, Colt, Doc Dog's Las Vegas Tattoo, Ybor City

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

So, this tattoo, my seventy-fourth, is from one of my favorite Elliott Smith songs, Talking to Mary, which is off of the posthumously released two-disc set, New Moon.

Mary is the kind of woman that you’re lucky to ever meet. She knows you better than anybody ever has, or ever will; She can hear what you’re thinking like you were saying it right out loud. You love her so much, you’re scared, always, somewhere in your head, of the day she might go away.

I know this woman, that feeling. Nothing feels so bad, and so purely good, both at the same time.

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Tattoo #73

November 07th, 2013 | Category: Life,Opinions,Tattoos,Thoughts on Music
Tattoo #73, by Jessica, Deja Vu Tattoo, Baton Rouge

Tattoo #73, by Jessica, Deja Vu Tattoo, Baton Rouge

So, I wrote about this tattoo as part of larger narrative, but I also want to write about the tattoo itself.

This tattoo is from the song, I Can’t Get My Head Around It, which is off of Aimee Mann’s, The Forgotten Arm, a record that isn’t just a collection of songs that share a theme, rather, it tells the story of a washed-up junkie ex-boxer, his girlfriend, and their totally fucked up relationship. To me, the songs definitely stand alone, but you don’t get the full emotional impact of the record until you listen from beginning to end, at least once. It’s a really beautiful, really sad story of a relationship in which love just isn’t enough to make everything okay. I was smack in the middle of that sort of relationship right around when The Forgotten Arm came out, and while I absolutely love the record, certain songs, I still skip them sometimes.

Anyway, this tattoo had been on my list for a long time, these lyrics really hit me the first time I heard them, and ever since. I guess I was just waiting for the right time to do it, which ended up being my trip to Baton Rouge for an Aimee Mann show. Baton Rouge was one of those I’m either going to go, and die, or it’s going to be a fucking blast trips. I felt like shit the morning we left, I spent the previous day in the hospital getting a fresh trach, I was exhausted. Still, nothing was going to make me not go. I would have had to die to not go. It wasn’t easy to go, but I wasn’t going to miss Baton Rouge, seeing Aimee Mann, being there with someone I love.

“…kicking is hard, but the bottom’s harder…”

Kicking is hard, but sinking into cold nothingness is worse. I’ve hit bottom before, physically, emotionally, but I’ve always been able to kick my way back up. One time, I won’t be able to, but we’re not there yet.

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Random repaired tattoos

November 06th, 2013 | Category: Life,Tattoos




I got these repaired last Sunday…

Oh, and this one… I re-wrote the post.

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Baton Rouge: Arrival and a Tattoo

October 09th, 2013 | Category: Life,Opinions,Tattoos

So, the drive itself was really long, and really boring. Though, we got the most bizarre call about halfway through the ride. Randy (my ex-step dad) was all animated on the phone, I couldn’t totally hear him, my ear hadn’t cleared up yet. He just sounded really excited, and he never gets excited about anything, except for maybe when a new kind of beer gets invented. After he ended the call, we pulled into a gas station, he turned toward me and said, “Okay, we’re going to have backstage passes, and we’ll get to hang-out with the band.” He may have followed up with, “Oh, also, birds are eating your face.” I don’t know, I was already a freaking out about getting to meet Aimee for the second time. This time, with a little plastic tube in my throat. This time, everything I’d say would be in text. My first thought, at least I won’t be as likely to blurt out anything stupid. Still, I was nervous, and I had until the next evening to be more nervous. Now, many may wonder HOW Randy scored backstage… everything. Well, I wonder too, even now. He won’t say, it’s a total mystery.

Anyway, we got to the hotel, a really nice downtown Hilton; art deco, French influences, really chic, early Tuesday evening. We got upstairs, the room was nice, a little old, but really nice. I had a big cozy bed, which I promptly got aboard. We got my forty-seven devices plugged-in; two vents, MacBook Pro, iPod Touch, iPad mini, NeuroSwitch, various batteries, particle accelerator, Time Machine, freeze-ray, mini death-ray (the original is mounted on a classified roof-top), I don’t really travel light.

At this point, I was worn, I was comfortable, I didn’t want to move, at all, ever again.. So, an hour later, we went to get me a tattoo. Whenever I go out of town, I try to get a new tattoo, and I knew if I didn’t go that first night, I wouldn’t go at all. I knew I’d want to sleep in the next morning, I wouldn’t want to follow any kind of schedule the day of the concert aside from getting TO the concert.

We went.

I always just try to google and pick the highest rated place nearest to my hotel, a system that hasn’t let me down so far.

Enter Deja Vu Tattoo


If you ever need a tattoo in Baton Rouge, Deja Vu is for you…!

If you ever need a tattoo in Baton Rouge, Deja Vu is for you…!

In my experience, it’s not so easy finding artists willing to even TRY tattooing smallish lettering, and SOMETIMES people can be a little taken aback by me at first glance, my hoses and tubes and what-not. The latter being way less true than the former, tattoo/goth people are generally the most welcoming people I’ve ever met. The girl I met that night in Baton Rouge was neither scared of small lettering, or my various hoses. Jessica at Deja Vu was totally cool and impressively skilled, she did a really spectacular tattoo on my leg.

The stencil…

The stencil…

My brother, Jessica and I discuss geo-political wartime economic policy...

My brother, Jessica and I discuss geo-political wartime economic policy…

Jessica etching words into my flesh...

Jessica etching words into my flesh…

Tattoo #73

Tattoo #73

This tattoo, lyrics from Aimee Mann’s fifth studio record, The Forgotten Arm, from the song, I Can’t Get My Head Around It, is one of my favorites.

This one had been on my list awhile, but it felt particularly appropriate that evening…

“…kicking is hard, but the bottom’s harder…”

I’ve always said, since I died but didn’t, that if I felt too exhausted, or too scared, or too both, to go do something, then I should absolutely go do it. I fail sometimes, but mostly I don’t. Mostly I go and do and have a blast. Kicking is hard, but hitting bottom, not fighting back, feels so much worse. I’ve done it, it’s awful. It’s terrifying. It’s terrifying because you’re not just lying down on purpose, you don’t hit whatever bottom you hit because it’s oh so cozy, it’s that you genuinely don’t have the energy, the will to get back up. You feel like maybe this time, you’re out of time. I kick because it’s Hell to sink.

I felt really pretty sick when we got to Baton Rouge. By the time Jessica was etching in the finishing touches on her beautiful work, I’m pretty certain I had a fever. I was freezing cold, but we weren’t anywhere cold. I basically ate dinner asleep, covered in six blankets. Everything just caught up with me; two trach changes, the ear tube, almost no sleep, the drive… I pushed until my batteries died… and I’d do it all again right now. I had an awesome night in a cool new city, I met a badass tattoo artist, I got a gorgeous tattoo. I’d rather drop dead on some adventure than in some hospital. That night I had a blast, and I didn’t die… score!

The next night, well, it would be better than anything I could imagine.


Tattoo #72

October 06th, 2013 | Category: Life,Tattoos
Tattoo by Randy (touch-up by  Colt), Doc Dog's Las Vegas Tattoo, Ybor City

Tattoo by Randy (touch-up by Colt), Doc Dog’s Las Vegas Tattoo, Ybor City

So, this is actually my SECOND tattoo from possibly my favorite Nirvana song, Verse Chorus Verse, which is on several Special Edition collections.

I don’t usually get two tattoos from the same song, but these words, they’ve always felt very true, and very beautiful, if a little sad in certain contexts. The words could mean different things on different levels, they apply to many situations. People debate their meaning, as have I. To me, the song”s about one’s relationship with a fix, loving something (someone) that hurts you at the same time.

I know this feeling, but I’m glad to know it just the same.

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A new tattoo

September 21st, 2013 | Category: Life,Tattoos

So, tonight I get to go for a new tattoo, and I’m trying to decide what to get. I have too many ideas, and too little skin. At one time I was going to stop at sixty, but then life changed and I decided to just go until I run out of space, or quit breathing, which ever happens first.

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Tattoo #71

September 20th, 2013 | Category: Life,Opinions,Tattoos,Thoughts on Music,Thoughts on Writing
Tattoo by Kyle, Doc Dog's Las Vegas Tattoo, Ybor City

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

So, tattoo #71… is a lyric from a really kind of cryptic Elliott Smith song, No Name #3, which is off his first record, Roman Candle. The font is actually Elliott’s own hand-writing, I got it from a little pdf lyrics book that comes with the Remastered version of Roman Candle from iTunes. Elliott liked writing songs on bar napkins, scraps of paper, hotel stationary, anything on hand when an idea hit him. He didn’t just write obscure barely recognizable versions of songs that would eventually get cleaned up and put on a record, he’d write an entire finished, ready to record song on a crumpled piece of junk paper. He was the essence of chaotic genius.

As a whole, No Name #3 doesn’t make a ton of sense. I don’t think, as a whole, it’s supposed to tell a story. To me, it reads like scraps of poetry that convey an overall theme. No Name #3 is about being tired, totally exhausted, spent. Worn. Worn and just wanting to rest.

My favorite section goes…

“Watched the dying day

Blushing in the sky

Everyone is uptight

So come on night”

It’s a really gorgeous piece of writing, so much emotion in just a few words. It’s the sort of writing I aspire toward. I really like the imagery; watching an end of day sky, the kind of sky that goes from deep blue to hot orange to soft pink, waiting for that blush to be enveloped by darkness, black sky filled with stars that look like watchful angels. Wanting night to come because the day was just so Goddamn fucking tedious. It’s sad, it’s beautiful, it’s honest.

I feel this a lot. The day can be so tedious, so oppressively empty, I just want the quiet of 3 a.m. At 3 a.m. life isn’t bringing me down, the quiet is soothing. I get waves of intense sadness, loneliness, but after those demons leave , and all’s silent, the things that I want start to feel possible again. Sometimes I make them possible when day comes, sometimes I can’t, but night gives me the will to try.

So come on night.

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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.


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