Friday, December 30, 2016

Breathtaking Moments

     Life showcases many breathtaking moments throughout our time spent on God's great Earth. Holding a newborn baby is breathtaking. Watching your favorite baseball team win a World Series is breathtaking. Passing a challenging test, your first kiss, hearing your favorite song at just the right moment, buying your first home, these are breathtaking moments. Watching your bride walk down the aisle, staying up all night to watch the sunrise over the water, breathtaking. Watching your child grow into an awesome adult, watching families grow, keeping lifelong friends close, that's breathtaking.
     I personally have experienced a numerous amount of these moments in my life time. I continue to experience them thanks to the amazing support system around me. However, we with ALS experience literal breath taking moments that honestly scare the shit out of us. As I've said many times in this blog, ALS attacks everything we rely on in our bodies. ALS tried to take my breath away with pneumonia and in fact succeeded in taking my friend Dan's breath away for good with pneumonia just a few months back. Many of us use breathing machines in some capacity to keep our breaths from being taken away. I wear a bi-pap machine as I sleep so I don't have to worry about whether or not I'll stop breathing while I dream. Michelle knows more about lungs and how the respiratory system works then she ever thought she would have to. I have adopted suction machines, oxygen tanks, cough assists,and nebulizers, "just in case." Another friend of mine with ALS just got a tracheostomy put in because he got fed up with fighting for every breath.
     We take for granted breathtaking moments all the time. We also take our bodies and health for granted every single day, that is until something goes wrong. God created some of the most amazing living and breathing organisms that we could ever imagine. Our beautiful pets breathe, our children, the beautiful plants and wild animals in our environment. By God's Grace we wake every morning, open our eyes, take a deep breath in, and experience breathtaking moments God has created in our lives. Don't pity those that experience these breathtaking moments differently than you, but surely give thanks to God's Grace that you don't have to worry about breathing.

West side of Washington Island, WI. Breathtaking.

Saturday, December 17, 2016


     This isn't going to be a sappy Christmas installment like all our favorite shows are doing before they break for the Golden Globes. This blog is a reflection on the, "Journey of Kris." Rosie, Cate, and Kamm recently visited to share pictures that never made it to Facebook that encapsulated epic experiences we've shared over the years. These pictures mixed with the question I get a lot, "did you complete your bucket list?" inspired me to list some of the awesome and influential shit I've experienced in my lifetime.
     I've seen Bruce Springsteen from third row on my Dad's shoulders at 12 years old. I've heard Bon Iver's eclectic voice at the Chicago Theater with Kurt. I've won numerous athletic competitions in nearly every sport. I have driven fast and expensive cars at stupid speeds. I've camped in the wilderness with nothing more than a flint. I've scaled bluffs, traversed valleys and streams, climbed monstrous trees. I've kayaked the treacherous waters of Death's Door. I've asked out dozens of women, some enjoyed the advances, others put me in the friend zone. I've taken abuse from the police for having the wrong color friends. I've lost great friends and managed to wrangle in others. I became a well-respected special education teacher, influencing the lives of hundreds of individuals with disabilities. I've been in fist fights and always came out the victor. I've had a shot of whiskey with breakfast. I caught an eight inch trout with my bare hands. I've golfed nine holes in nothing but my swim trunks. I've trespassed to see views that should belong to no man other than God. I told Matt Damon he was a dick to his face when he autographed my shirt without permission. I've thrown epic parties that are still talked about to this day. The most beautiful woman on the planet married me. I've swam with barracuda and octopus. I've been hypnotized to act like a fool. I've held my precious nieces and nephews in my arms. I kept a beta fish alive far past his expiration. I've grown as a man with Michelle by my side. We added the best dog a man could have to our family. I've seen sunsets that have given me glimpses of Heaven. These are only a few items I've checked of the "Bucket List", I've checked many more, but these alone leave me satisfied, content and proud.
     ALS put a major kink in my adventurous and spontaneous self. It would be hard, if not impossible to complete any of these adventures in the state I'm in today. Legs, arms, hands and core don't work for shit. I need help dressing, eating, turning things on, etc. Does that mean ALS has won? Do I cave and just call it quits? Hell no.
     My adventures have changed drastically but I've accomplished a whole hell of a lot even with ALS. The Gronk's Grace Army has raised nearly $100,000 to date to help numerous ALS organizations. Michelle and I had our hands in the push that made the 21st Centuries Care Act pass into law, advancing ALS research and support systems for years to come. Gronk's Grace has been all over the news in our community raising awareness and making a significant impact on children, who very likely will be the generation to find a cure. I won the Courage Award from ALSA for advocacy work and supporting others with ALS. I met the 2005 World Series Champion White Sox, drank beers with them, stood on the field and watched a game from the Skybox. Most importantly,  I've grown in my relationship with Jesus Christ and used that relationship to disciple to friends and family, bringing them closer to God. I've seen sunsets giving glimpses of Heaven. Jesus dying on the cross guaranteed my spot in Heaven. All I've got left on the "Bucket List" is to ensure those people who were there for the wild and crazy adventures are there for the next ones in Heaven one day.

Thursday, December 1, 2016


     Yesterday I had a routine pneumonia vaccination scheduled at Walgreen's, a quick prick to give me another layer of defense against that wicked sickness that nearly killed me a few months back. My hospice nurse, Jenn, had scheduled the vaccination and had a confirmation time. Emily bundled me up and we drove to the appointment. Upon arrival we were met with much confusion from the pharmacy team. They questioned why I needed it being that I'm only 30, and pneumonia is an "old person sickness." Jenn and I reiterated that I had just had pneumonia and thus am susceptible. I told the head pharmacist that I have ALS, as Jenn had already mentioned when she called ahead the day before. The pharmacist asked me what ALS was so I gave him the nickname Lou Gehrig's disease thinking surely this would jog his memory, I was met with a blank stare, so he got the mouth full, amyotropic lateral sclerosis and how it's a vicious neurological disease with no cure or survivors. With that definition he was finally able to find something in his computer. Meanwhile, I had done dozens of frustrated donuts in my wheelchair intentionally leaving behind scuff marks on the pharmacy floor.
     The pharmacist returned, I thought to myself that I'd finally be out of this damn Walgreen's, they were blasting Country Christmas, slowly driving me insane. Nope, the pharmacist showed me that they could not administer the pneumonia vaccine to anyone 18-49 years of age unless my pre-existing condition matched one of the several high-risk provided; brain cancer, Alzheimers, stroke, to name three of the at least 95+ high-risk conditions. ALS wasn't even recognized on the list. This struck a nerve with me. I was able to get past the ignorant pharmacy staff that hadn't heard of ALS, although that's embarrassing, but I was not happy to see that a nationwide pharmacy didn't recognize my disease as one serious enough to receive the pneumonia vaccine.
     The first Ice Bucket representing the world wide phenomenon is being displayed at the Smithsonian due to it's enormous impact to the ALS community. The Ice Bucket Challenge was a tremendous driving force to raise awareness around the world, but my most recent experience showcases how we with ALS still feel ostracized, often, not just by gawkers but by medical professionals. There are wonderful researchers out there fighting for a cure for ALS by the Grace of God, but they can't conquer this monster on their own. Commitments must be made to continue to advocate for those with ALS and relentlessly raise awareness. Phenomena is great, but it dies off. Small initiatives go a long way in raising awareness. Students at Converse Elementary in Beloit, Wisconsin, who come from tough backgrounds and poverty have started a Penny War to raise awareness and money for those with ALS in their community. The ones with the least giving all that they can for the well-being of others. 
     Yesterday's experience was yet another reminder from God that my work here isn't done, I'll continue to raise awareness until my dying day so those with ALS who come after me never have to feel excluded.