My Whole Expanse I Cannot See…

See yesterday.

So, I keep starting my writing too late, I’m just too distracted. My trach’s bothering me, and that doesn’t help my writing at all. It doesn’t help anything. I feel… nervous.

A lot of it is, I’m trying to switch from a very narcotic cough medicine to a barely narcotic cough medicine, and the new one hasn’t really worked yet. Withdrawal isn’t the problem, my doctor’s spectacular, I haven’t felt sick at all. It’s just the cough, it gets so bad that I have to temporarily switch back to the medicine I’m supposed to quit.

I’m scared, I can’t live coughing. It’s not living, it’s just existing.

Today was just long, and I’m still really not feeling spectacular, still very melancholy.

Tomorrow, I’ll write much more tomorrow.

So, I’m kind of down tonight, a lot of worries bouncing around in my head.

Anyway, I’ve decided to make another crazy vow. The last one really wasn’t a complete failure, I’ve brought some really good people into my life, and I really am writing less bad.

I’m going to post something every day until November, and continue trying to be the Michael I want to be, need to be…

To Michael – You are awesome, and I’m so happy we got to hang out. Hugs + kisses, Aimee

So, this is my last little artifact from Baton Rouge…

I pre-ordered Charmer on vinyl… for absolutely no reason. I just thought it would be neat to have, maybe I’d hang it somewheres.

Now that it’s signed…

Musical wall-art…

…there’s no maybe about it!

If you’ve never listened to Aimee Mann before, Charmer is a good place to start.

So, the show’s over, people are filing out of the theatre, but not us. In about two minutes we’d be quietly ushered through a maze of twisty hallways toward “the band,” as we’re told by some theatre official.

I decide to not plan anything I would say to Aimee and whoever might be with her. I don’t pre-type anything. No, “Hi! It’s great seeing you again!” No, “Thank you for not doing a song for that Shrek movie, it probably would have damaged me… emotionally.” During the show, she talked about being approached to do a song for a Shrek movie, but everything she tried ended up being too dark, so that project got scrapped. Instead, she stripped down her Shrek song and wrote another creepy fairytale song, Borrowing Time, which would be on @#%&*! Smilers. I won’t mention it. The conversation will be fresh, totally grounded in the moment. I decide I won’t can some phrase and end up having to robot speak it because people won’t know to look at my screen. I figure, if I’m typing something right then, someone will get curious, they’ll ask my brother how I communicate, they’ll ask to look at what I’m doing. Action, Reaction is kind of my thing.

By the time I’m done thinking about all these things, we’ve reached the center of the maze. Fortunately, rather than getting our skulls busted open by a minotaur, we come upon Aimee Mann, Paul Bryan, and that piano fellow whose name I don’t remember and can’t seem to Google.

First, Aimee is a genuinely smart, genuinely nice person. She’s not all facade, “Oh my God, it’s SO good to see you! Enjoy these free t-shirts, I have to go, bye!” She’s the essence of shy coolness and style. She says, “Hey, how’s it going?”

She sees my hands, “Wait, are all those tattoos real?” but from her it doesn’t sound stupid or ignorant, it’s more like she’s just surprised to see her own words permanently etched into to someone’s flesh. I have three of her song titles/lyrics tattooed on my hands, “Wise up” and “It’s not” and “Who knows?” A song about facing your problems before you can ever fix them, a song about realizing someone can’t fix you, a song about not knowing if you can ultimately be fixed at all. I’ve lived these words and I’m talking with the person who wrote them and she’s looking at her words written again, on my skin. The art of words, in full-circle.

My brother tells her I have bunch of her lyrics as tattoos, he asks if he can show her the tattoo I got the night before. I eyebrow, “Yes!”

Aimee Mann and Paul Bryan noting my tattooed hands…

Brian (my brother) showing off tattoo #73: “…kicking is hard, but the bottom’s harder…”

Aimee says, “Wow, I’m honored.” I feel like she means it, I don’t feel like she says it just because she thinks she should say something. She’s just not that kind of person, she’s not a fakey fake celebrity. She’s a lyricist whose trade is honesty, honest words.

Me telling Paul Bryan, “I like kitties!” or something, it was a blur…

Just as I’d hoped, if I was typing right then, people would be curious and read my screen. Paul Bryan gets curious, he and my brother do the reading, I only use the robot voice once, I think.

So, at this point, Aimee asks something totally unexpected, it almost feels like a dream, even now. She asks if there was anything they didn’t play during the show that I might want to hear backstage. She says there’s a piano in the dressing-room, I can hear anything I want. I don’t even have to think about it, immediately I type, “Yes! Looking for Nothing would be fuckiog awesome…” Paul ducks in, reads my typing aloud, and laughs, “Excellent choice.” He produced @#%&*! Smilers, he loves the record too. Aimee says she hasn’t played it in a really long time, but she’s down, she’ll play it.

We’re in this hallway, she’s strumming on her guitar, quietly practicing the song. She asks if anybody has a phone and can “Google the lyrics to Looking for Nothing.” She has such a collection, eight studio records, she’s bound to not have every single song ready at any given moment. She’s not an iTunes Library, she’s an artist, and above all, a regular person. That’s what I like about her, so much, she’s just very real, and kind. She can’t totally remember her lyrics, she doesn’t tell me, “Yeah, I don’t feel like playing that, pick something else.” She picks up her guitar, she Google’s the song, she doesn’t let me down. While she’s warming up, I jokingly type, “If you wait long enough I can type you the lyrics…” I just want her to know that I really love the words, I know them by heart, and I really appreciate that she’s taking the time to sing them for me. I don’t know that I actually conveyed all of that, but I hope she got some of it. There isn’t time to type more, she’s ready to play.

Now, I have a beautiful HD video of Aimee and Paul spectacularly singing Looking for Nothing, me singing along with a voice no one will hear. The spectacular fellow on piano, it’s all captured in 1080p. I could post it right now… but I won’t.

Aimee and Paul didn’t sing for Vimeo or my blog, they sang for me. I feel like it was private, a sacrament not for the entire world, but only for that time, in that room, for those who were there.

I will, however, post pictures…

Are we rolling?

Gorgeously singing…

Toward the finish…

End.

If I didn’t have these pictures, or the video I still watch every day, I might doubt that it really happened. How could anything that good really happen?

This is Aimee Mann singing Ghost World, which is off of her really spectacular record, Bachelor No. 2 (Or, The Last Remains of the Dodo).

I have really nice memories tied around this record, it was Tivoli’s favorite Aimee record. We’d listen to it straight through, on those rainy Summer days, talking about the songs.

I woke up the morning of the show feeling like hot garbage, definitely not top-form. Like I expected, I slept in, and I didn’t feel much like hitting the town. I just kept saying to myself, You’re fine, everything’s fine, the show’s going to be awesome. We mostly just hung out around the hotel, went for a cajun dinner.

By evening I was feeling pretty great, it was like I got fresh batteries. My ear opened up, I could finally hear. I watched the Baton Rouge sunset thinking about someone I love, her touch, her smile… her kiss. She’s with me even when she’s not, I never feel like I’m completely by myself, even when I am.

Sunset in Baton Rouge, thinking about a girl…

Our hotel was right near where Aimee was playing, the very stylish Manship Theatre, so we decided to walk it. The early evening air was cool, but humid, a freshness unique to Southern October nights. It was a nice walk, though on that walk down a bumpy sidewalk, toward the Manship Theatre, toward backstage passes, I started getting nervous. It was a happy kind of nervous, I wouldn’t have wanted to not be there. It was just, the first time I met Aimee I didn’t have the little plastic tube in my throat, my language was voice, not text. I wanted to say so much, I was just scared I wouldn’t be able to type quickly enough, or maybe I would have to use my fake computer voice and it would just sound stupid. My computer does text-to-speech, but I try really hard not to use it. I prefer to have people read my text, or at least to have someone that I’m with say what I’m typing. The digital voice just makes me cringe, it’s cold, it mispronounces words, it’s definitely not the voice I hear in my head. I don’t like pushing the idea, disabled people sound like robots, and I really didn’t want Aimee to remember me from that night on as the first robot she’d ever met. I just wanted everything to go well.

Ted Leo!

Ted Leo opened for Aimee, and he was a great start. First off, he’s really funny. He’d tell a story between songs, and they were all pretty great. It was never like, “Oh, God, you’re more boring than Dune, either shut up, or go die in a fire. Please.” Of course, his music was great, that goes without saying. His guitar is super fast.

Aimee Mann and Ted Leo
(The Both)

Then, Aimee joined Ted for a few songs, playing together as their new band, The Both. They’ve been hanging out so much on tour, writing songs together, that they decided it’s worth starting a band and putting out a record. Together, they sound really great, their songs are totally worth a record, totally worth paying cash for said record. Their stage chemistry was also fantastic. So long as Aimee doesn’t quit writing solo-records, I’m down with The Both.

Finally, Aimee took the stage all by her lonesome and opened with a solo, beautiful rendition of Freeway, and took off from there. I’ve seen Aimee play three times now, and this show that I drove eleven hours to see, drove eleven hours after a previous day in the hospital, drove eleven hours all the way from Tampa to Baton Rouge to see, was absolutely the best of the three. Aimee’s voice had never sounded so clear, so decadently lush, sadly beautiful.

Aimee Mann, with Paul Bryan on bass, and a spectacular piano fellow whose name escapes me…

After Freeway, Aimee was joined by Paul Bryan on bass guitar, singing accompanying vocals, and a really great fellow on piano whose name my addled brain forgets. It was an intimate show, the instruments only complimented the crisp vocals. They played a few new songs off of Charmer, but mostly she sang older songs from other records, which was totally fine by me. All her songs off of all her records are great, there isn’t a single song that would have had me thinking, Ugh, not THAT song. I only think she avoided Charmer because it’s a loud record, but this wasn’t a loud show. It was two guitars, a piano and vocals. It wasn’t a rock show, it was a cozy and close acoustic show. A pretty much perfect show.

Aimee Mann is a brilliant writer, none of her songs are throw-away songs. She writes beautiful lyrics, beautiful stories of addiction, loss, stories of people hanging on by the tips of their fingers. She writes stories about lives that bend sideways, lives that take bad turns, that don’t go the way they were supposed to go. She tells complete, beautiful, honest stories, in way under five hundred words. To me, she writes flash fiction set to gorgeous music. It’s the sort of writing I aspire toward. Her words are art, I carry them with me always, in my head and on my skin.

That night, she played so many songs, it was a spectacular setlist. She sang stories I know by heart, stories of loneliness that always make me feel a little less lonely. While I was totally happy to hear whatever she’d play, there was one song I really hoped to hear. For days before the show I kept thinking, I really really really hope she plays Looking for Nothing. Yes, I actually thought “really” three times. Looking for Nothing is my favorite song, not just my favorite Aimee Mann song, it’s my favorite anybody song. It’s off of @#%&*! Smilers (Smilers for short), which also isn’t just my favorite Aimee Mann record, Smilers is my favorite anybody record, it’s full of melancholy, vivid songs. Looking for Nothing is a song about feeling lost, something I’ve felt most of my life. I didn’t feel so lost that night, but the song will always be a part of me, will always resonate with me. I just wanted to hear it that night, in that place, a place that was very different from the place where I heard it the first time. Aimee played other songs from Smilers, she didn’t skip the record entirely. She played lots of songs, all great. She left the stage and came back for an amazing encore. She didn’t sing Looking for Nothing.

The show was over.

The evening, however, so wasn’t.

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…!

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…

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

Jessica etching words into my flesh…

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.

So, I was willing to put my body through any level of duress to go on this Pilgrimage to Baton Rouge to see my third Aimee Mann concert. Only dropping dead would have stopped me, and even THEN, I may have risen anyway.

The day before I’d ended up having to have two trach changes, and an ear tube installed. The trach changes sucked, but I really wanted the ear tube. Ear tubes are a bad solution for me anymore, after six years of not breathing through my nose, there’s just a lot of degradation. My hearing’s been muffled for awhile, everything sounds like I’m underwater, but after a few ear infections because of ear tubes, my doctor really doesn’t want me to try them anymore. He’s actually talked me out of a new ear tube at least six times. Doctor Padhya cut the hole in my throat, and has taken care of me ever since. He genuinely wants the best for me. I’m definitely not an easy patient, I’m a lot of extra hours, but he does whatever’s necessary to keep me alive, and happy.

I wrote him the following note before my trach change:

Hi Doctor,

I know this is short-notice and I apologize, I just decided I HAVE TO ASK what I’m about to ask…

I know ear tubes are bad, I know that they are no kind of long-term solution, and are even bad short-term, HOWEVER… On Tuesday at 5 am, I’m driving all the way to Baton Rouge to HEAR my favorite living singer/song-writer, Aimee Mann. My hearing has been muffled since my facial surgery and I’ve dealt with it, I’m even trying to get used to it, but now that I’m going to see Aimee… I just want to hear her, I want to hear her the way I heard her seven years ago. I want to hear her beautiful, sad songs clearly, not like I’m under water.

An ear tube balances the pressure at least 2 weeks, and even for some time after it’s out. At least it’d be clear enough by Wednesday evening to hear Aimee.

I promise, I’LL NEVER ASK FOR ANOTHER EAR TUBE EVER AGAIN. 🙂

If you can’t do it I understand, but I figure I have to ask anyway.

Thank you for reading, and your always excellent care.

Michael

Well, when I woke up from my first trach change, I had a tube in my ear. Doctor Padhya has never let me down.

Needles to say, piling into the van after a day of procedures, piling in at 5 am, I was exhausted. I don’t generally leave my room the day after a trach change, let alone the state, but I wasn’t not going.

I went.