My Whole Expanse I Cannot See…

I formulate infinity stored deep inside of me…

Jan 24

Cincinnati, again

Category: Life

So, I’m flying to Cincinnati in a few hours, like, seven hours from right now. Their going to re-measure my trach because it’s still not right, but that’s not even the main reason I’m going. They asked me to come back because the doctors at Cincinnati Children’s Hospital had never seen anyone with SMA Type 1 at the age of thirty, they didn’t even believe the diagnosis. I couldn’t have SMA Type 1, it had to be Type 2, or 3, or maybe something else altogether. People with SMA Type 1, they don’t go twenty-seven years without being trached, if they see twenty-seven at all. Well, even though I don’t fit the diagnosis, at all, fancy genetic tests proved that I definitely have SMA Type 1. Maybe I’m some sort of SMA Missing Link, I don’t know. They’re going to run a bunch of tests and study me.

I just feel really weird, for lots of reasons I’m more uneasy than the last time I went to Cincinnati. I’m thirty, I shouldn’t be, but I am. I don’t know, I can’t articulate it just now, but I feel like such a failure.


7 Comments so far

  1. Veronica January 24th, 2011 10:03 am

    Speaking from someone who has SMA type 2, I know what you mean. It sucks, huh? Each day can be a challenge when everything you do or want to do needs to be involved with others etc. You’re not a failure tho, and neither am I even though it feels that way sometimes. We rock! 😉

  2. phil ritchie January 24th, 2011 11:40 am

    i think you’re the opposite of a failure.

  3. Otávio Pacheco January 24th, 2011 3:46 pm

    I totally agree with mr. Ritchie up here. Keep going, man, you rock!

  4. Laurie January 25th, 2011 10:30 pm

    I’m not going to tell you that you’re the king of awesome, because I don’t know you..all I know is what I’ve read here and what I saw on TAL. What I do know, though, is that if you didn’t worry that you were a failure a lot of the time, well, you wouldn’t be human. I think most of us do that – even those who obviously aren’t failures.

  5. Dani January 27th, 2011 3:03 am

    What if you could trade your soul for an immortal body?

  6. Dani! January 27th, 2011 3:08 am

    Riding on the Greyhound bus system is way more interesting than flying in airplanes! lol…jk…depends what interesting is to you….

  7. Somebody unimportant January 28th, 2011 10:19 pm

    Seriously? So now it’s the “I’m 30 and I shouldn’t be and I feel like a failure” show? You were lucky to live to ten let alone 30. Articulate this. Despite being trapped in your body (which I would never dismiss as anything less than pure hell) you have experienced more love, support and unconditional good will than most people could ever hope for. I totally get why you trudge through bouts of depression and hell who wouldn’t. There is much you can’t physically do but what you are capable of transcends your physical limitations. With great power comes great responsibility. It’s true for Spiderman and it is true for you Michael. Get off your ass because people all over the world are watching you and counting on something brilliant. Suck it up and inspire us with more than your survival. You can either be the SMA guy that lived X amount of years or the Michael Philips that created that brilliant work and “oh by the way didn’t he have some kind of muscular thing?” “Man that guys writing changed me”. Pick your legacy but stop wasting our fucking time with this marination in faux failure. Everyone is rooting for you. Seriously.