Friday, June 16, 2017

What Did You Say?

      I've always been the guy to strike up a conversation. I would talk to anyone. The toddler in the sandbox, the elderly man on a park bench, the smoking hot soccer mom, even the meth-head on the L train and convince him he really didn't want to rob us. I talked myself and friends out of numerous tickets for a variety of run ins with the police. Even once when we had cases of beer in the trunk and were under age. I turned nosebleed seats into behind the dugout with just a little flirtation. I even got past Matt Damon's security team with a small lie and ended up with a picture with Jason Bourne. The epic stories could go on for hours. God definitely gave me the gift of gab.
      When I was first diagnosed with ALS it originated because of the difficulty I was having with walking. Now no one wants to hear that you have ALS, but doctors like to soften the blow when they can, so since I was having difficulty in my lower extremities, they put the gracious twist on the diagnosis saying at least it isn't starting top-down. Many people who are diagnosed with bulber onset ALS pass away quicker because they lose their ability to talk, swallow and breathe first. So I had that going for me.
      Pretty quick after my diagnosis I built a strong relationship with the Chicago Chapter of ALS Association. They called on my gift of gab to travel to DC and advocate on behalf of those people with ALS, currently, have passed, and will receive diagnosis in the future. I took up the challenge two years in a row. Making congress members shut up and listen regardless of policy and partisan lines. I wear this work as a badge of honor and am blessed that I had the opportunity to make a difference when I did. This past May when the Chapter was recruiting troops to go to DC I had to decline. After two years of fighting this fucking disease it crept past my neck threshold, no matter what we threw at it, it became harder for me to speak clearly and loudly. 
     My emphatic and ear-splitting roar is becoming fainter and fainter by the day as my tongue muscles atrophy. Now you better believe it, fighting a battle with my own mouth is not one I enjoy, it pisses me the fuck off to say things and not be understood, especially after being such a wordsmith. However, I'm a grown ass man, I've abandoned bitterness and resentment and now focus on reflection.
     C. S. Lewis once summarized God's Grace and love for us in these words that fill me with comfort of what's to come and the pain I'm experiencing now. "God whispers to us in our pleasures, speaks to us in our conscious, but shouts in our pain: it is his megaphone to rouse the deaf world." There is purpose to your pain. Don't curse his name for it, use it to bring change to this deafening world.

Tuesday, June 6, 2017

Summer Chapter

     It's freaking summer! At least it is for most teachers and students alike, Michelle still has four days and it seems like a cruel joke. Most of us have traditions for the summer, especially those of us in the Midwest. We've got twelve weeks to pack as much entertainment, excitement and relaxation into as possible. We've got dozens of wedding activities on our calendar. We dodged them last year but they caught up with us. Weddings are a Pintrest tornado that impact everything in their path, they're never simple no matter how hard you try, yet they inevitably end up being fun. I used to have a blast at weddings. I'd dress up all dapper, figure out who would be my drinking partner, usually get hammered but get away with it with my charm and dance moves. Wheelchair bound, no booze and needing assistance with every physical movement impacts wedding season for me.
     Others are packing their summers with outdoor activities that Bass Pro Shop marketed all winter. My Pops is jacked to get off the grid, put on his '90's, ugly Bears hat and fish from dawn until dusk. Other friends are waking their hibernated boats to dock at the lake for skiing, tubing and Tomfoolery. My Mom, Eliza, and Kurt will escape to Washington Island for extended periods of time where time seems to stop. Kamm and the boys may venture to Baraboo, where we conquered the bluffs around Devil's Lake and drank more Michelob Ultra Golden Light than a platoon returning home from war. Before ALS, my Summer Chapter's were always focused on getting off the grid, being near water, turning off technology, reading books I put off and interchangeably swapping coffee highs and beer buzzes. Now I can't escape the grid. My life and happiness depends on technology. I can't stand inches from the cliff, I can't flip the canoe for a laugh, I can't drive the car onto the ferry boat, I can't eat the steak at the wedding, or take a shot, or pinch Michelle's butt on the dance floor.
     I'm sure by now I've got most of my readers shedding tears, but know I'm not crying. Sure, my Summer Chapter looks a shit load different this year than it has in years past, but this just gives me the opportunity to throw summer tradition in the fire. With ALS, your chapters become sub-chapters, or more like a bullet point list. Every day I wake, I get to cross off point A, and every night I go to bed with Michelle, I get to cross off point Z. The other 24 points have a way of finding themselves into my plans whether I schedule them, or they appear by God's Grace. As long as I continue to check off point A and point Z I'll make the most of this summer. If one day I don't, you know where I'll be, I'll be off the grid in Heaven doing all the things I love and miss about what we all love about summer.

 Bluffs around Devil's Lake, Wisconsin