The Truth Board

A Blog by the Editors of
The Truth About the Fact: An International Journal of Literary Nonfiction

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The Truth About the Fact: A Journal of Literary Nonfiction is an international journal committed to the idea that excellence in the art of letters can play a vital role in transforming the planet we share.

Sunday, April 18, 2010

Because Life Doesn't Wait for You to Catch Up...

“I just recently became truly aware of how tenuous my life is, so I really don’t have time to waste on fear.” ~ Michael Phillips


Michael doesn’t have a voice. He doesn’t have any motor functions either and experiences the world on his back from a hospital gurney. He is isolated by his condition but united by his humanity. Showtime’s “This American Life,” an Emmy Award-winning show inspired by Chicago Public Radio’s hour-long radio program by the same name, tells stories of the human experience through the eyes of the experienced. Its commitment to first-person storytelling imparts the personal narratives with a level of honesty that is often lacking in 21st century cable programming.


Mike Phillips is twenty-seven years old. He is bedridden, has lived with his mother since birth, and is suffering from a rare neuromuscular disease called SMA or spinal muscular atrophy. His precipitous physical degeneration complicates his life. As he loses his bodily functions, he slips further and further into the shadows of his isolated mind. He needs to escape the trappings of his secluded psyche. If Michael is to continue, he needs to connect.


Ira Glass, the creator and host of the program, begins his interview with Michael by asking him who’s voice he would choose to have replace his own. Michael doesn’t miss a beat. He quickly starts typing. He doesn’t use a QWERTY keyboard but a specially made typepad that allows him to tap his thoughts into a computer using his left index finger. It takes him a full three minutes to complete his response, a single sentence gem that is well worth the wait: “I totally want either Johnny Depp or Edward Norton, whoever is available, because either way, they are both badasses.” Michael has plenty to say but needs a voice to say it. So who agrees to clear his throat, jumpstart his pipes and fill the need? None other than Captain Jack Sparrow himself, who hereafter speaks Michael’s words as they were meant to be spoken—with a touch of badass.


Michael’s principal source of human contact is his mother, who cares for him every minute of every day, and even sleeps on the floor beside him at night to ensure that she is near her son should something go wrong. She loves him very much. Michael doesn’t doubt this fact but still feels a pronounced absence in his life. He is lonely. Michael’s only point of contact to the world beyond his purple room is his computer, a faceless machine suspended from a complex highway of metal tubing above him.


Michael needs a companion apart from his mother. He posts an ad on Craigslist for an assistant. He finds one he likes and develops a strong relationship with her. She paints his nails purple, dies his hair bright red, takes him to get his first tattoo, and all the while, does not once question his decisions or motives. Happy with his results, Michael continues to post ads on Craigslist. His next post lands him someone more than an assistant. He finds Sarah, his girlfriend.


Glass asks Sarah what it was about Michael’s Craiglist ad that caught her attention. “First of all, it was perfectly spelled and punctuated—VERY SEXY,” she replies.


Michael remembers with love’s clarity how Sarah changed his life: “Her eyes are what first struck me about her. Her gaze is enough to make me forget about all the things that tend to worry me unendingly. I don’t think about when I might die or whether or not I’m doing enough with my life. For a moment, all of that goes away.” For a moment, Michael can just be. Sarah frees him from fear and surrenders him to blissful unconcern. Despite his unique condition, Michael’s experiences and emotions are not as singular as they appear.  He longs for what we all long for—moments of grace found in moments of connection. 


Only when we connect to others are we truly able to connect to ourselves. Many of us live our lives in fear of who we are. We doubt ourselves and favor identities that are not our own. We live a masquerade until someone removes the mask and blesses the face behind it in all of its beautiful imperfection. Those who embrace our bona fide selves allow us to live without insecurity or hesitation. When this happens, the burdens of the world lessen and we are able to stand up proper and proud. The sad reality is that we only come across a handful of these individuals in life. Whether we choose to accept them or not is up to us. Sometimes we allow them to slip through our fingers, to escape our grasps, only to then regret it later in life.


Michael lets go. He loses Sarah.


Months go by and Michael agonizes over her absence unendingly. It’s why he agrees to do the interview. He needs someone to talk to, someone to hear his pain.


I wasn’t giving you the full story earlier when I wrote that Michael doesn’t have a voice. He does have a voice; it’s just incredibly painful and uncomfortable for him to use it. After being without her for what seems like an eternity, Sarah visits Michael. Michael removes his trach tube. The cameras roll.


Michael: “There you are.”

Sarah: “Here I am.”

Michael: “How do I sound, terrible?”

Sarah: “You sound good.”

Michael: “It’s weird.”

Sarah: “It makes me really happy”

Michael: “You look happy!”

Sarah: “It’s just nice to hear your voice.”

Michael: “I love you, you know.”

Sarah: “I love you too.”

Michael: “I just wanted to say that. Sorry.”


Michael starts to cry. His tears pool in the sockets of his eyes, drowning his sight in a sweet and stinging puddle of happiness and sadness—happiness for reconciliation, sadness for time lost. They resolve not to waste a second more.


Michael recalls a day spent in the park with Sarah shortly after: “The whole thing was very John Cusack. It just started to rain and sure I have a bypass, a trach, and three batteries, none of which ought to get wet, but at that point, I didn’t care. The world was just absolutely fucking spectacular.”


So dust off your boombox and raise it as high as you can above your head. Muster up your inner John Cusack and position yourself under the windowsill of someone you’ve lost. Press play and blast the soundtrack that originally brought you together. Why risk it?


Because you “don’t have time to waste on fear.”


~Ian M. Johnson


Anonymous Anonymous said...

“It was that simple and that complex. Love can kill you, it can tear you apart, but if you’re very lucky, it can bring you back together.”

April 18, 2010 at 4:13 PM  
Anonymous Anonymous said...

We do doubt ourselves to the point that we don’t let others close to us, because if they get close enough they might realize how inadequate we really are. I don’t think we are scared to connect with others because we are scared of who we are, we are scared to connect with others because they have the ability to see that what we are is not good enough. Living behind the mask is easier than the hurt that can follow the revelation of our true selves.

April 18, 2010 at 5:21 PM  
Anonymous Lilly said...

Wow, Ian. Wow

April 20, 2010 at 12:23 AM  
Anonymous Jessica said...

Don't ever stop writing!

April 20, 2010 at 2:43 AM  
Blogger Tamara said...

I love it! However, it's not easy to be courageous in real life.

April 20, 2010 at 8:12 PM  

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