My Whole Expanse I Cannot See…

I formulate infinity stored deep inside of me…
Archive for June 25th, 2017

…and Ryan Gosling read the blog

June 25th, 2017 | Category: Life,Tattoos

So, somehow or other, Ryan Gosling got ahold of my blog post about being on The Last Word, and he tweeted about it…

Now, those who haven’t been reading the blog from since way back when probably don’t realize that Ryan Gosling is in my all time favorite movie, Stay. I have two tattoos from that movie, it helped me get through the first few months after I was trached, after Sara left that first time before the last time.

Ryan Gosling as Henry Letham…

“Apparently, I can”
One of my favorite lines from Stay…

Yes, having Ryan Gosling mention me in a tweet meant a lot, it was really fucking cool.



I was on The Last Word!

June 25th, 2017 | Category: Life

So, on Thursday I posted a tweet after watching folks on MSNBC talk about how Trumpcare is basically going to DESTROY Medicaid, mentioning who would be affected by the cuts… everybody but people with disabilities. Even after the brutal video showing disabled protesters being dragged from Mitch McConnell’s office, we still weren’t getting much coverage. I posted my tweet, and it FLEW! Rachel Maddow did a story on the protesters, a really spectacular story, and my tweet REALLY FLEW. Then, it was Friday, trach day.

Now, I never sleep a wink the night before trach day, so I’m pretty beat before the fun even starts, and the fun started much later than usual. I didn’t get into the O.R.  until after 4pm. It was actually just as we were headed to the O.R. that my mom got a phone call from a producer from MSNBC… Apparently, somehow, we got invited to talk about the Medicaid disaster on one of my absolute favorite shows; The Last Word with Lawrence O’Donnell (though, Friday night, the equally badass Ari Melber had the helm). I really don’t know how much my tweet had to do with anything, there’s a lot of behind-the-scenes stuff I’m fuzzy on, but nevertheless, I was on The Last Word!

I ended up having to have two trach changes, as the first one didn’t take, so I didn’t get out of recovery, out of the hospital, and back to the house until after 7pm. Normally on trach day, I’d eat a little something, take some more pain medicine, an Ativan, and check out for awhile. Friday was extra trying because of the double traches, but I wasn’t going to miss The Last Word. A little juice, Ativan, some medicine after we got to the studio just shy of 9pm, everything was running as smoothly as my Apple Watch. Except… I totally hadn’t written what I was going to say to Ari. Fortunately, words always come to me when the chips are down, I finished typing with, like, fifteen minutes to spare. I simply wanted to convey that we all have hopes and dreams, and though none of our hearts’ desires are guaranteed, the Founding Fathers gave everyone who participates in the beautiful American experiment the right to be free to pursue their happiness. I hope I used the right words.

At any rate, locking people with disabilities away in institutions destroys  the image of America as the Shining City on a Hill.

Being on The Last Word was one of the Top Seven coolest experiences of my really, really, really unusual totally usual life.