Me

     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.

Clueless

     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.  
     

Just Relax...

     We have all been anxious at some point in our lives. Did I get into my top-choice school? Will they accept our offer on their home? Are we having a boy or girl, or maybe twins? Is the lump benign? It's human nature to get nervous about things we can not control, we also handle our anxiety in different ways. Exercise for some, meditation for others, Netflix binging, getting hammered, prayers and reflection. I've always been the guy to stand steadfast in the face of anxiety. I took a hippie stance on it, with, "just chill" and "relax" mantras. When that didn't work I usually turned to drinking beer followed by taking my anxiety out on a small objects, like a Kleenex box or toaster.
      I kind of was an asshole to those who seriously struggle with anxiety. Anxiety disorders are the biggest mental health disorder category recognized in the U.S. People with anxiety disorders can become incapacitated by the anxiety, at times not being able to get out of bed in the morning. They have addictive tendencies that almost always manifest in a negative way. The anxiety blocks your ability to make rational decisions, hell decisions at all. Anxiety can cause you to worry about unlikely occurrences, for example, getting sideswiped by a semi, leaving you petrified of being in a car. I used to honestly think these people needed to, "man up." Everyone has crap to worry about so they should just relax and distract themselves.
      That is until recently when I began waking up in a panic. I would tie my stomach in knots because I would over think what to eat or what not to eat, eventually leading me to losing my appetite, where I would then become anxious again about not eating. Having ALS certainly fucks with your emotions as I've written about many times before. My anxiety overflows at times when I'm around those that I care for. I become anxious thinking what if this is the last time I get to see them? Did I say everything I could? Do they know I love them? This is where God's Grace comes blazing into the room. God's Grace gave me the courage to talk openly about my anxiety which embarrassed me. In facing that fear I found medication that has brought me back to a guy I recognize. Someone not consumed with fear and anxiety, but lifted high by Grace.  

     God's Grace isn't limited to just me. If you suffer from anxiety you shouldn't be embarrassed. God is always here to shower you with Grace and there are always people willing to help you feel like the kick-ass you that you are.

Tap, Tap

     Ever since I left the hospital at the end of September I've been completely relying on others to drive and control my wheelchair. Having someone else control a Power-chair ain't easy. My chair has six wheels, weighs 375 lbs, and turns on a dime. A few holes ended up in our doors, fabric was torn, and many toes were crushed. I really had to be patient. My chair is a part of me at this point and it was hard to relinquish control of really the only thing I could physically do anymore. I was completely at the mercy of others. I could have succumbed in fear, got depressed, stopped giving a fuck, and honestly there were moments I felt that way. However, thanks mainly because of my wife, I leaned heavily into Jesus and His word. God had made it clear that I still had a purpose here on Earth when he healed my pneumonia, so who would I be to quickly forget that and throw a pity party? Prayers and reflection led me to make a concentrated effort to lean on what I truly value, relationships, in this time of need.
     I made it a point to reach out to folks I had been putting off, said more meaningful words to those close to me, and connected with ALS advocates. I strengthened slipping friendships and was showered with love and laughter from those closest to me. I also made some important connections with Team Gleason and the ALS Association that lead to an awesome opportunity. These groups worked hard to get back some independence for me. They made several calls and collaborated to provide head controls for my wheelchair. A Quantum technician came out yesterday and hooked me up with a head array that allows me to steer and control the tilt features all with simple taps of the head. I haven't been able to control the tilt function in over a year, even when I was using my hand to drive. I've been geeking out all morning. This amazing blessing I received is yet another example of God's Grace that is ever present, good times or bad, you can always find His Grace when you lean on Him.  

Purpose

     Weeks removed from spending eight days in the hospital with a horrible case of pneumonia I've had time to reflect. Michelle and I have had deep discussions, we've spoken to our pastor about purpose and laid out all our prayers and worries to God. Michelle has seen every terrible thing ALS has hit me with along the way, and admits I looked the absolute worst in the hospital. Laying on my back day in and day out, coughing incessantly, gasping for air while constantly being filled with medicine and fluids.  I felt the end might be near. Suggestions for a trach came up as the only way to heal me, however this goes against my wishes so Michelle and I found ourselves signing off on hospice and heading home. All things pointed to a regression or even death. At home, my body struggled to fight off the virus. I used all the strength I had to kick the pneumonia and clear my lungs. I now have no independence. I lost all strength in my hands leaving me unable to move my wheelchair. I struggled with what to do with my life and my purpose. God made it clear to me there is still significant purpose to my life, regardless of ALS. He helped me restore my kick-assness.
      I decided to approach everyday like an old retired dude. I intentionally leave tasks on the to-do list, I read reviews on internet purchases before making decisions, I have bird feeders where I keep tabs on birds, and watch The Amazing Race. More importantly and seriously I find purpose in being a teacher. My teaching subject has changed over the years, as I now find my content written in red.
      One thing I know is ALS can never take my ability to love. I make it a point to reach out to those around me, to keep relationships strong. Intentionally reaching out to those in our lives to give love can make a major impact. It is another purpose for life.
     Pneumonia didn't take me out. God's Grace healed me. My life has purpose. I would be selfish not to give the days I do have left all I've got. Today it might be a Facebook message to a fellow person with ALS, tomorrow morning a prayer for a friend I know who is struggling, advocating for the next ALS fundraiser, or playing with my nephews. Let love in and give love back. If you're reading this you definitely have purpose, you're still here on Earth, seek that Grace and embrace it. 

Let Go, Let God

     Pneumonia ain't no joke. It's especially brutal when you have ALS and can't cough worth a damn. I spent a week in the hospital being poked and prodded, tubes down my throat sucking out flem and having doctors in and out of my room talking about "what if's?" They asked about a tracheostomy, which I am opposed to. It's a hot topic with ALS patients right now, but for me my future in heaven greatly outweighs being completely trapped in my body. Michelle signed many Do-Not-Resuscitate forms before my Bronchoscopy procedures. And I had to lay in a bed for 8 days being told when I could eat and drink with no shower in sight. It was the scariest time of my life. I thought it was going to be the end, but I poured all of my hope and trust into God and he made it clear I'm not done yet, but even if I was I would be ok with it.
     I am now back home with Michelle and Wrigley, the IV's removed from my arms, my ability to breathe working its way back, with the help of numerous machines.  I watch the trees wave in the wind, listen to the rain, sleep next to my beautiful wife, I feel like a person again. The mind fuck that I face is that of course I'm happy to be home and feeling better, yet how great can I feel when I still have a terminal illness with no cure. Being in the hospital for a week really zapped the small bit of strength I had left. I'm having trouble driving my wheelchair, my neck feels weaker and now I have even more nurses stopping in to make sure I'm maintaining some sense of  "normalcy."
     It's hard not to burst into tears when I think about my future. However, when I start thinking dark thoughts I dive into God's word where He promises pain and sickness is not permanent and that He will never abandon me no matter how miserable the experience may become. I don't know when my last day will be but I do know for sure that when that day comes I will be consumed with Grace and made anew. On that day I will conquer ALS.
  

Chapters

     The summer is officially over by my standards. Michelle has returned to work. Last year at this time I would have been just getting into the swing of things after my honeymoon period with my students. Reading stations would be in full swing, benchmarks would be set, behavior interventions under way, scrapping organization techniques that flopped, my fellow teachers know what I'm talking about. I would be on a double dose of caffeine every day and begging Michelle every morning to hit snooze to no avail. It's not last year though, I've retired and am in a whole different world. A forewarning to those who may already have a tear in their eye, this blog post isn't for dwelling on the past. I will always be a teacher as I've said before, my curriculum and environment has simply changed.
     My days begin differently these days. I give Michelle a quick kiss before she leaves and then I sleep for three more hours before my PIC (Partner in Crime) comes to help me with all the physical shit I can no longer do. My PIC, Emily, is really more of a blessing God provided me for my next chapter. Em cleans the house, waters the plant, feeds me, does laundry, helps me run errands, plays with Wrigley, the list goes on. She is a stress killing superhero. Em frees me up to focus on the priorities. Students needs used to be priority number one for me, now my priorities are much simpler.
     Now I focus my attention on Love. Keeping in touch with those that I love. Telling them I love them, showing them that I love them, and connecting with those that need more love. I spend more time reading God's word. I brainstorm ways to advocate for those with ALS and for families in the Stateline area that need love and support. I also don't waste my time on bad TV or music. I've caught up on shows, and discovered excellent musicians. Don't get me started on my awesome Fantasy Football teams. I eat what I want and only drink great beer, I ain't got the time for sub-par cuisine and crappy beer.
     I know there will be days when memories come creeping back into my mind and make me feel sad, but that ain't today. I've got a new curriculum to follow, a curriculum that is ever changing, a curriculum bursting at it's seams with Grace.