My Whole Expanse I Cannot See…

I formulate infinity stored deep inside of me…

Writing

May 09th, 2010 | Category: Life,Opinions

I’ve never had this much trouble writing, at least, not since I started writing this blog. It’s a bad feeling, not being able to create, it’s frustrating. I know I can fix it, I know I can dig my way out if I try hard enough. I mean, ultimately, writing is the only thing I have that’s truly mine, I can’t quit. Whatever I write is what will be around when I go wherever I go after I quit breathing, it’ll be all that’s left. I want something left. So, this not being able to write nonsense has to stop.

I need to pull myself together. I need to write with complete abandon. My writing is about absolute honesty, I need to get back to that place. I need to write like Kurt, and Elliott, and Alanis, writing without safety nets. Otherwise, the writing is empty and meaningless.

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Banging against an amp

July 23rd, 2008 | Category: Life,Random Thought

So, there’s a video clip of Kurt Cobain in concert, it’s a clip from Nirvana’s Lithium video. He’s in a crazy white lab coat thrashing around on-stage, just trashing everything in a totally manic fit. At one point, he’s on his knees holding a giant amp and banging his head against it.

To me, I think it’s one of the great visual metaphors for frustration and lack of control. It’s usually the absolute first image that comes to mind when the entire world seems insane. I see it plenty enough and I’m glad it’s there for me. I drift to lots of images like that, different things for different moods. I actually think about why I do it, and partly, I think it’s how I experience physical emotional outbursts. A fellow gets really upset, maybe he puts his fist through a window. I can’t put my fist through anything, nor can I even imagine myself doing so. There are certain things for which I just don’t have a frame of reference for myself, so I pick an approximation from elsewhere. Why bang my own head into an amp when Kurt Kobain does it so well?

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Slow day…

June 30th, 2008 | Category: Life,Random Thought

It’s kind of a slow day here in Tampa. I intended a more interesting day, but sometimes schedules break no matter what a fellow does. It’s a little disturbing in an existential kind of way. I have way too much time for idle thought, so when plans and schedules break I always have an hour or so of, Fuck it, things happen no matter what I do. Why bother planning ANYTHING? Then, of course, I stop being ridiculous and I do something else. I get frustrated, more so now, because before I do anything from errands to a movie, I commit everything to paper. The plans go on a calendar, then I write out rather detailed notes about the specific things I want to do. I try to think as far ahead as possible. I don’t write in a rough or demanding tone, I try to write how I would talk. I could be more abrupt, or generic, or short, which could definitely save me typing time, but I just don’t feel right doing so. So, I write things like…

So, today we’re going for a nice breakfast at Pach’s Place. Then, we’re off to PetSmart to buy… a fish!

This is going to seem crazy, but while we’re out, everywhere we go, I want you to take pictures, lots of pictures. Pictures of me at places, the places themselves, food we order, nice people, anything interesting. If we photograph a person, ask if it’s okay, tell them I’d like to potentially use it for a blog and give them my card. The camera’s in my J.Crew bag, the cards are in my wallet.

Speaking of my card, I want to give it out like crazy, especially at places I’m a “regular.” Give it to friendly servers, managers, bartenders, valets, anybody who’s generally nice that we meet.  We’ll start today and refine the process.

In the side pocket of my J.Crew bag is a little black notebook and a pen, I want you to write down the letters when we do the alphabet. 

Before we go, clip my Shuffle to my right wrist and do the headphones in the van. All my iPod stuff is in the Crown Royal Bag in the armoire. Ask me about the volume level, I want it soft enough so we can still talk.  Also ask if the headphones are in right. 

Things to bring:

• J.Crew bag

• Suction

• A glass syringe

• Battery (a fresh one)

• A wash-room device (keep it in the J.Crew bag just in case)

• Nirvana beanie cap

• iPod Shuffle+Headphones

Pach’s Place:

• Bowl of grits with maple syrup and an empty bowl

• Cup of hot water

• Cup of black decaf

• Tell me their juices

• Anything you like

Just take some grits and mix them in the empty bowl with some hot water.

PetSmart:

• Betta fish kit

• Betta fish

Let’s put the fish somewhere by my tv.

When we’re all done, just rinse the suction and syringe, put stuff away, and charge the battery.  Make sure that you don’t forget to bring in the hose, they get squishy in the summer heat.  You totally rule!

The general events go on a printed and online calendar, then I write the specific notes and print those. Two things tend to vex me, probably a little more than they should. Obviously, big things like today are troubling, “Oh, I didn’t realize you’d need the van so early. I didn’t read everything you wrote.” That’s… frustrating. It also drives me crazy when I write these missives and people flat out miss things on the list. My assistants are definitely better about the lists (hi assistants!), but others… I could write, “and I definitely want to wear my Nirvana baseball cap,” fifty times and that cap wouldn’t end up on my head. On the other hand, I’m absolutely elated when what I write gets followed, I get such a bang out of it. It quells my existential fear that nothing I do really matters.

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Silence

May 24th, 2008 | Category: Life,Random Thought

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.

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Another Article Not Quite Right

April 29th, 2008 | Category: Life,Opinions

So, in a few days I’m going to be featured in the season premiere of Showtime’s tv version of NPR’s radio show, This American Life.  The following is a St. Petersburg Times article written about said episode…

TAMPA — If this were a story airing on Ira Glass’ quirky public radio and cable series This American Life, it might begin like this: “Michael Phillips may be the most unlikely rebel you’ll ever meet. “Not for his taste in science-fiction TV — Christopher Eccleston’s version of Dr. Who remains his favorite — or for the music he loves, which includes Seattle indie rockers Death Cab for Cutie. Not even for the purple nail polish that sets off his thumb — the only body part besides his face that he can control.

“It’s that Mike, a 27-year-old with a muscle disease that has eliminated his ability to move his limbs, wants a bit of independence from the mother who has cared for him over his entire life.

“And neither one of them has quite figured out how this is going to work.”

But this is not one of Glass’ precocious, insightful, slightly off-kilter stories. It’s a story about what can happen when a storyteller with a keen eye steps into the world of someone who needs to re-examine his life, and doesn’t even know it yet.

Call it the Heisenberg Uncertainty Principle of modern media: Anything you observe — particularly with cameras, expert cinematography and a microphone — can change it forever.

In this case, Glass’ work observing Phillips’ life was a catalyst for transformation no one could have anticipated when the reporting started.

“It was like (Glass) was the Chaplain on the Titanic,” said Phillips, typing out the words on a 17-inch Macbook Pro laptop suspended above his bed.

Working his left thumb across a cylindrical switch connected to a CD-sized box on his bed, he can spend long minutes spelling out responses letter-by-letter, sending the completed sentence through a voice simulator that makes him sound like a cross between Anthony Hopkins and the HAL 9000 computer from 2001: A Space Odyssey.

For much of his life, Phillips could speak. But after passing out while drinking pineapple juice in January 2007 — his heart stopped and doctors thought he might die — he woke up with a breathing tube inserted in his neck, his voice gone.

So Glass conducted his initial interviews by e-mail, where Phillips was more honest than he’d been with anyone else about his innermost thoughts.

“I wanted to tell him everything,” Phillips wrote about the e-mails with Glass. “I was really kind of screwed up and I didn’t know how to fix it.”

The fruit of the pair’s labor airs Sunday when This American Life’s second season debuts on Showtime.

Though Glass also will bring his show to movie houses across the country tonight — including theaters in Tampa and Sarasota — with a special This American Life — Live! event, Phillips’ story is too long to appear on that program.

Alerted to the story by a producer whose family knows Phillips, Glass said he was drawn in first by his matter-of-fact recounting of how often he nearly dies when there is a problem with his respirator.

“The way he wrote about what those moments were like was utterly without melodrama,” said the host, who was intent on avoiding a typical, corny story about overcoming a disability. “It was just a very easy reporting of ‘Here’s everything that goes through my head when I realize I may die in a minute.’ It was kind of amazing.”

What Glass eventually uncovered was a young man who has lived longer than many struggling with spinal muscular atrophy, his weight at about 60 pounds and his muscles wasted away (those with Phillips’ condition, the form that strikes in infancy, often don’t live past one year).

But, at the uncharted age of 27, Phillips wants more independence from the mother who still sleeps each night at his bedside, ready to respond if his breathing tube pops out.

What you won’t see onscreen is that some of Phillips’ new spark came from interactions with Glass, which required him to think a bit more about how he was living — and not living — his life.

“Mike was living in such a way, he had no space to himself. . . . I’d come over for a date and his room was public space, just an extension of the living room,” said Sara Rosenbaum, a St. Petersburg Times reporter who met Phillips in 2005 through an online ad, began dating him a few months later and then dumped him last year, right before Glass entered the picture.

“There was no space in his life for me,” she said. العاب ماكينات القمار مجانا “As he started writing Ira, he began to change; he realized what he wanted in his life . . . (and) after Ira left, I began to realize how much I cared for Mike after all.”

Ask Phillips about that moment, and he’ll use his laptop to fire up Death Cab’s A Lack of Color, pointing out a lyric toward the end: “On your machine, I slur a plea for you to come home/but I know it’s too late/I should have given you a reason to stay.”

“In writing to Ira, I saw that I really needed to make changes . . . not for her, but for me,” he wrote. “If I got myself okay, I knew she and I could be okay. كيف تلعب بوكر

He used money provided by the government for his care to hire more professional assistants. The anime posters he once liked as a youngster were replaced; on one wall sits a framed This American Life poster, signed by Glass and his cinematographer, titled “What I Learned From Television.”

In Glass’ story, the host asks Phillips who he would like to serve as his voice in the story. And despite the British lilt of his computer software, Phillips named American actors Edward Norton or Johnny Depp.

A moment later, Depp’s silky voice begins reading one of Phillips’ many e-mails, bringing his engaging personality to life in subdued, introspective tones.

“(Sara’s) gaze is enough to make me forget about the things that tend to worry me unendingly,” Depp purrs as Phillips, reading an e-mail about Rosenbaum. “I don’t think about when I might die or whether I’m doing enough with my life — for a moment, all that goes away.”

Glass said he tried initially to get Norton for the voice- overs, mostly because he’s a New Yorker who might be sympathetic, but the actor was out of the country. Later, Showtime president Bob Greenblatt egged the host to call Depp’s agent, and within a day the Pirates of the Caribbean star was on board.

At the home they share in South Tampa, Phillip’s mother Karen Clay seems at once engaging and nervous; the last thing she wants is to be seen as a hardhearted mom who can’t let her child go.

But a moment’s inattention can be disastrous. Even his younger brother Brian has scrambled to cope with emergencies while caring for his sibling; when death can come from suffocation in minutes, there is little margin for error.

“There are still certain things that family takes care of better than professional caregivers,” said Clay, 55, who remains proud of how her son brought Glass’ show into their lives by himself. “A silly mistake for him is life-threatening.”

Still, Phillips remains confident he can reach the goal he states for himself at the close of Glass’ story: life outside his mother’s home, on his own, within a year.

“I have to at least try,” he typed. تعليم البوكر “I have had plenty of (death) scares right in this room. So I don’t see the outside as any worse.”

It’s a target the host thinks Phillips can attain, too, though he downplays the impact of This American Life on inspiring him to reach it.

“He was in a rut, was depressed and wasn’t getting out much, and we arrived from the outside world in a very big way . . . and he remembered: I don’t have to be depressed,” Glass said. “I think the way in which we changed his life is the way that anybody’s life might be changed by suddenly having the national press show up.”

It’s an okay article, definitely not terrible, yet… like most articles about me, it doesn’t quite “get” me.  I’m not trying to get “a bit of independence from my mother” who has cared for me my entire life.  I’m not doing what I’ve been doing to get away from my mom.  I’m simply trying to have my own life, a life like anyone else has a chance to have.  Not everybody ends up with the life they wanted, but it’s everybody’s right to try.  That is all I’m doing.  I’m not a rebel, I’m just trying to experience life on my terms.

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