My Whole Expanse I Cannot See…

My Sara is officially a Boston Globe published badass…

Silence takes a great deal of fortitude, and I don’t always have it. I’m not even talking about having to type or spell everything I want to say, that is difficult in an entirely different way. Right now, I’m talking about being in a room full people and hearing the perfect moment for the perfect remark over and over again, but not being able to do anything about it. After awhile, I just quit listening, I get too annoyed, too frustrated. I get lost in my own head, it’s just Mike and Mike’s thoughts, and they’re not always good. The longer the silence goes, the more a certain degree of claustrophobia sets in. I start to wonder things like, “if I actually died, how long would it take anyone to notice?” Then, “No, that’s just stupid, you’re paying someone to make sure you’re okay, and Sara loves you too much to let anything bad happen to you. Also, you fucker, there’s absolutely nothing wrong with you. If your BiPap spontaneously stops, that’s God’s will and you’d deserve it.” Right after which I think, “But I really don’t wanna’ die.” The inner monologue never stops, my mind is never quiet. Being a silent observer for long spans of time is extremely difficult for me sometimes. I try to think about good things, cheery things, but I inevitably drift through dark places. I think that is my nature, I’m just prone to wander down roads of reverie and melancholy. I don’t see that as bad, it’s just how I am. How I’ve always been. I wonder if that is a cop out. Could I change if I wanted? Do I want to? I have plenty of time to think about it. Silence affords much time for thinking.

Last night Sara and I went out for desert and a new tattoo. Sara drew it for me, a little piece of her artwork is now on my stomach. It’s quite beautiful…

Thanks to Ed Powell at The Blue Devil for his outstanding work.

A few weeks ago Sara and I went to see Radiohead. Between the two of us we only knew a hand full of songs, but the show was absolutely fucking awesome. They sounded amazing, but their stage was just gorgeous. العاب قمار  The lighting was insane, I have no idea what it was, but I totally want a set in my room. مواقع روليت

It was a really nice evening, Sara and I held each other, surrounded by music. كرابس I was happy…

The profound wrongness of this thread was so astonishing that I had to post the following reply.

It’s amazing to me that some of you seem to know absolute facts about my life. Still, let me just clarify a few things.

First, I’m definitely grateful to my mom and family, of course I am. She’s done lots of work to keep me alive. Yet, I was raised to feel like a pretty “normal” person, with no real difference between me and my younger brother save for the fact that he can walk and I can’t. I was never coddled or sheltered from anything. I was raised to know that I’d never climb trees or drive a car, but so what? There’s an entire world of other things to do, but sometimes I’d have to do them differently. It was never instilled in me that I couldn’t do just about anything. I was raised like a typical son, really. So, I think it’s natural that I want to leave the nest.

Secondly, I can’t imagine wanting to “pull the plug.” I like the plug right where it is, plugged in and with a back-up battery. I like my life, I don’t see it as a bunch of losses. I never walked, so I don’t miss that. Any other “losses” have been so gradual that it’s easy to adapt. Honestly, the only difficult thing about my disability is not being able to talk, because that happened quickly and unexpectedly. Still, I’m adapting to that too.

Next, I’m not trying to live “alone,” I’ll always need assistants. Those assistants just won’t be part of my family.

Lastly, Sara and I are together because we have lots of fun. We go to movies, clubs, restaurants, things any couple does. We flew to Boston last December to see an Aimee Mann concert. We have practically everything in common. I courted her and we fell in love. Oh, if sex is “NOT” a possibility for us, then I have absolutely no idea what we were doing Sunday morning.

Apparently, my St. Times article and my This American Life episode have caused much debate on the Internets.  Much of the confusion comes from the Times photo.  Basically, to some people I look like some kind of robot or some really fucked up plastic doll.  The second topic is whether or not Sara and I can actually have sex.  So, let’s clarify both.

First, I’m neither a Cylon nor a doll.  Hilariously, the photo is one of the better photos taken of me. Honestly, I do look much better in person.  I’m totally aware that I don’t look like a “normal” fellow at all, but I still don’t get the whole “fake doll” thing. I get it a lot more since I got the tube in my throat. My favorite is, “holy shit, that thing’s real???” I hear that often enough around town. I mean, sure, I’m pretty still and quiet, but why in the fuck would someone push a dummy around a bar in a flat wheelchair and talk to it? If I saw me, my first thought would be “wow, genetics fucked that guy over” and not “holy shit, is that a robot?”  Wait, wait…  What if I am actually the fifth Cylon model?  Could I have gone 27 years without knowing it? Okay, I’ve changed my mind about you robot/doll people.  Pure. Genius.

As for sex, I’m a little old fashioned about getting into details, but this time I will.  Sara and I do have sex, lots and lots of sex. I have more sex than my brother and his friends combined. Actual sex, not some kind of metaphorical pretend sex.  We don’t just share longing glances and write each other erotic angst-filled poetry, we go all the way.  It’s a little on the exotic side, but…  I tell her where to touch her and she puts my hand there.  We kiss, we touch, we do everything, sometimes twice.  I can’t really describe the complete sensuality of our sex life without crossing a line that I don’t want to cross.  I’ll just say that when we’re alone together, we don’t hold anything back.  How’d we get to such a place?  Well, I’m told by many that I’m rather charismatic. Also, the white noise made by my breathing machine puts women into some kind of trance.

So, to some it up: Michael Phillips, not a robot/doll, fucked over by genetics, has lots of sex.

I miss talking in the dark.  I miss closing my eyes and just saying any small thing on my mind, her head on my shoulder.  I miss whispering to her in the dark, softly telling her I love her, that I’m happy she’s lying next to me.  Everything I say is said under the soft glow of a 17″ MacBook Pro, all in text, sometimes in a mechanical British accent.  I can’t change it, this is the rest of my life.  For the most part, I’m used to this new me, but not always…  Not in the dark, holding her and wanting to say things the way I used to say them.

Isn’t my Sara gorgeous?  Also, isn’t my hair a little spectacular?

Photograph by Edmund Fountain