I had an extraordinary encounter last night which helped me to once again appreciate the awesome power of the internet. I was watching the NPR series This American Life on Showtime. Many of you I'm sure know the radio program, but I highly recommend that you watch the TV episodes as well, and especially the Emmy winning Season Two episode Escape. The first part of the program has a sweet story about inner city youths from North Philadelphia discovering the joy of horseback riding through Fairmount Park. It's inspiring and lovely in its own right, but the real meat comes in the second part of the episode where we meet Michael Phillips.
This is Mike. He is a writer from Tampa, Florida. Don't feel bad for him. He made it very clear to me that I could only write about him if I told the world what an asshole he is. Mike and I chatted it up last night, he in his bed in Tampa, and me on my couch in Brooklyn.
This is an example of how completely freaking rad the web can be. I saw Mike on Showtime, typed his name into Google, found his blog, sent him an IM, and just minutes after I had seen him on the picture tube we were chatting away. It's fucked up, right? Eventually we'll just pull on our earlobes and our hologram avatars will appear in each others living rooms. It's some real Isaac Asimov shit. Don't say we weren't warned.
Mike likes tattoos, music, J.D. Salinger all the things that any 28 year old guy might enjoy. He has a motor neuron disease called Spinal Muscular Atrophy, which causes a weakness in the voluntary muscles, the ones we use for walking, swallowing, or as in Mike's case, breathing. (Alhough it should be noted that Mike informed me he is "not particularly ill".) SMA is one of the many genetic disorders which owes advancements in its research to the continued study of stem cells. In March President Obama lifted the restrictions on stem cell research imposed by the Bush Administration in 2001 much to the joy of scientists, researchers, and anyone who wants Mike to celebrate his 29th birthday.
What struck me about Mike in the episode, and in my conversation with him was how normal he appears while living under extraordinary circumstances. He has machines that breathe for him, and machines that speak for him. The wonders of modern technology are the only thing keeping Mike alive. The internet has brought him freedom from the isolation of his bed. With just a small movement of his thumb, Mike can communicate with the world. He can share his writing, he can play World of Warcraft, and he can make friends with lonely insomniac chicks like me.
This post doesn't have any sort of deep life altering meaning. I was just psyched to stumble accross Mike, and to read some of his writing. I thought maybe my audience might enjoy it as well. I warn you that he can be a dark motherfucker. If you are looking for, "I have a disease but it's all rainbows, hope and blessings!" than I would steer you towards Michael J Fox's blog. If you want to read someone who writes from a place of frustration, pain and brutally raw honesty, than check out Mike's work at http://www.lithiumcreations.com.