Okay, I am going to get serious here. I want to talk about Michael Phillips. No need to change names on this one. I heard about Michael on This American Life. This started as a radio show on NPR and now it is on Showtime. You can download podcasts on itunes. Ira Glass is fabulous. Well, the show I saw about Michael really stayed with me. Michael has spinal muscular atrophy. He has lived past the age that the experts predicted. He has a trach and is vent dependent. (Okay I am soundy too nursey). He has a tube in this throat that is connected to a ventilator that does the work of breathing for him. This particular episode of This American Life has to do with Escape--the freedom of being on your own. He was asked who he would have do his voice if he could choose. He said Ed Norton or Johnny Depp. Johnny Depp actually did it! It was fabulous. It is so weird but I live next door to Michael's stepdad. I went to a holiday party with Dillhole back in 2007. Michael's stepdad and Mom were at the party too (they are divorced but remain friends). I never put 2 and 2 together until a few weeks ago when my sister was talking to Michael's Step Dad about Michael at a party I had.
Here is the link about the episode :
He has a lot to say and he writes it. He uses a MacBook Pro and assistive software to write:
I friended Michael on Facebook recently. I noticed his posts were pretty dismal--I can't judge. I have no idea what it would be like to not be able to be verbal, drive a car or any of the other things I take for granted. He did a status update that said he was "useless." It made me think about the definition of useless. I can't speak for Michael but I suspect he may have meant in the physical sense. Useless to me is the when nothing positive is being put forth.
Today is Michael's birthday and he has made it clear he does not want birthday wishes. I respect that.
No comments:
Post a Comment
Hi. I moderate the comments--if you just want the comment for my eyes only let me know. Also, there is a drop down and you can select "anonymous." Thanks!