Wednesday, April 1, 2015

Friday Night

      This week was a barn burner. The paperwork seemed like it would never end, my students were an extra kind of lazy, both brake lights went out on the car and the dog chewed up not one, not two, but three shoes. It's Friday though. That means we can go out and have some beers and just unwind. First things first, I've got to run through the checklist. What checklist you may ask? The checklist I've got to run through when I go anywhere to make sure the place is accessible. I'll back track to fill some of you in who may not have seen me in a while.
      Over a year ago I started noticing that I was tripping over my right foot when I was running and my ability to do squats at the gym vanished. I went in to see my doctor and he didn't have any answers, so I was off to the specialists. I was poked, prodded, pinched, scanned, flipped, medicated, and escorted to every wing of two different hospitals and two different sets of specialists all to land on the diagnosis of ALS. "Do you have life insurance?" "Do you have a living will?" "How many stairs are in your apartment?" "How are you feeling about all of this?" How do I feel about this? How do you think I feel about this diagnosis? I'm fucking pissed, I'm terrified, I'm confused, I'm only 27, isn't this an old person's disease?!? The answer to that is no. And this isn't some freak case that is only happening to me. There is a community of young people out there that are fighting the exact same battle that I'm fighting. The things we all take for granted and loved to do have now become much more difficult or impossible. Hiking is out. Taking a jog is out. Basketball is out. Climbing stairs to your buddy's apartment is out. Hell, driving is out, or at least much more complicated. This community of young people with ALS and our families lives have been turned upside down and though we may have a terminal illness, we have no timetable of how long we'll be able to continue to embrace the things we love. Could be 3 years, could be 40 years, but we will carry the burden of knowing that we have an expiration date that we all know is coming but that we face and experience a little bit every day. We can't put it out of our minds.
      Back to the checklist. Does the bar have low or tall tables? I don't want to sit in my wheelchair and look at people's assess all night, no matter how nice they may be. Is the front door at ground level, or do I have to come in some back door? How's the parking situation? Will I have a long way to wheel? Will my chair fit in the restroom when I have to take a piss? This checklist I have to run through on a daily basis probably never crosses my friend's minds. They can pick up and go, wherever and whenever they want and man, do I miss that. But this blog will not be used to complain, push depressing thoughts on my readers, this blog will be a vehicle to advocate for others with ALS and myself. This blog is a place where I can share the Graceful moments I experience on a daily basis and the great relationships I have with so many of you that motivate me to give this life all I've got.

Thanks for reading. More updates to come.


  1. Love you gronks! -your buddy mandz

  2. You are in my heart and prayers. Love ya, Momma Mar

  3. I'm looking forward to reading about your journey, and the choice you've made to fill it with faith, courage, honesty, and advocacy. True inspiration comes not just from those that do, but from those that can't ... and do it anyway. Thank you for that.

  4. Kris, Thank you for your tremendous writing and for taking the time to share your journey. Your words are powerful - truly a gift to us. What a witness. Let your light so shine before others...Thank you