Wednesday, May 6, 2015

It's been a year since I was able to......( WATCH THE MOVIE)

Prisoners know when they going to get paroled.  But he doctors say things to me like you'll be fine in a year, then I find out fine doesn't mean like the way I was.  Then they said oh let's talk in 3 to 5 years.

Yeah, nobody wants to tell me when I'll be able to prepare a meal, or use the bathroom by myself. Nobody knows when I'll go for a run again.

I can't dwell on this.  I can not. SHIT HAPPENS! I didn't do anything wrong. I was dealt a bad hand and I have to play it.... I fell down but that doesn't mean I can't get up.  I used to say that I won The Bad Lottery. But my cousin Barry corrected me, he said I only got 5 out of 12 numbers. I cannot dwell on the negative.  I can't.  I'm not gonna start morning for what I lost.  There is only forward.  It's a very long race and I don't know where the finish line is but I'm moving forward.

I have a fantastic family, and their healthy and that makes me happy.  I have access to great doctors and therapists.  And I haven't yet met anyone else with my condition; not in person.  But I've been able to communicate on the Internet with a lot of people who are in my boat.

So here's the deal.  I have Acute Motor Axonal Neuropathy.  It's very very rare and it means I have significant damage to the axons in my nerves in my arms and legs.  And the best doctors are saying that the only thing that heals axons is time and exercise and it happens at a glacial pace..  But you know what glaciers do?...  They flatten fucking mountains.  Walked a lot will will earlier I will


And my friend Josh made this movie................................  it was kind of weird to be the subject of the star but not the writer or the director.  I did have some editorial control for example I said I was lucky not blessed.  Also, I. already knew that I don't have a chance of ever spelling the name of disease I have.  But I found out I can't really pronounce it correctly either.



Yeah, a lot of people might turn to their deities if this crap might've happened to them.  But that would make me extremely hippocratic to suddenly start believing.  But I do have a community, my friends in the long-distance running world have given me a lot of help.  The same slogans that someone would use to help you get through mile 20 on your way to 26.2 help when you're in physical therapy just trying to walk.


4 comments:

  1. Hey Michael, this is Mahesh Bailakanavar and I have been with PPTC for close to a year now. I have heard a lot about you, of course all positive things, but never got a chance to meet you in person. I will meet you at the first chance I get. I'm so moved by your story and I'm sure you have been serving as a source of inspiration to may others suffering from CIDP. I'm sure that you will run your 30th marathon and can;t wait to see that day. I join you in saying FUCK CIDP ...

    ReplyDelete
  2. Somebody said to me "Some people don't get a chance to fight"
    I try to remember that.

    ReplyDelete
  3. Acute Motor Axonal Neuropathy = CIDP?
    Anyway, I hope you get better and run the park again.

    ReplyDelete

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