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Tampa man with spinal muscular atrophy contemplates independence on 'This American Life'

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 his entire life.

"And neither 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: Observing anything — 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 losing consciousness 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 nearly 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. "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."

He used money provided by the government for his care to hire more professional assistants. The anime posters he liked as a teen were replaced; on one wall hangs a framed This American Life poster, signed by Glass and his cinematographer, commemorating their 2007 tour "What I Learned From Television." Rosenbaum gave it to him after they got back together in December.

In Glass' story, the host asks Phillips who he would like to serve as his voice. 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, 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, Phillips' mother, Karen Clay, seems at once engaging and nervous; the last thing she wants is to be seen as a hard-hearted 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. "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."

Eric Deggans can be reached at (727) 893-8521 or See his blog at

.If you go

This American
Life Live

Begins at 8 tonight at Regal Citrus Park 20, Westfield Citrus Park mall, (Veterans Expressway, exit 9), Tampa, and the Hollywood Stadium 20, 1993 Main St., Sarasota. $20.

Showtime's This American Life series debuts its second season at 10 p.m. Sunday. Grade: A.

Tampa man with spinal muscular atrophy contemplates independence on 'This American Life' 04/30/08 [Last modified: Monday, May 5, 2008 2:58pm]
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