Benjamin Button

     As I gaze at baby pictures on Facebook or funny baby moments on Snapchat, I realized that those cute babies and I have a lot in common. We both need help using the potty, we both need help getting dressed. Babies need to avoid sharp, crunchy foods and so do I. Nurses are constantly keeping track of our weight and bowel movements. Babies ride in car seats with many seat belts, I also get strapped up to go anywhere in my wheelchair. Babies are constantly monitored to make sure they don't hurt themselves. I now can't go more than an hour by myself, which even that hour scares the shit out of Michelle. Babies wake their parents every night for milk or a poopy diaper. I wake Michelle every night for body movements or bodily itches.
      The major difference in this comparison is that day by day babies rely less and less on others, striving for more and more independence. I rely more and more on others and lose abilities slowly each day, while desperately grasping for scraps of independence. There aren't thousands of ALS pinning pages on Pinterest for Michelle or I to find life hacks for managing ALS. There aren't thousands of books, workshops and podcasts that provide numerous possibilities to navigate this devastating and deteriorating disease, the few resources out there are still missing their final chapter; What to Do Now There's a Cure. No matter what angle we look at ALS we're going to find the same conclusion. You can't get rid of it, it will get worse, we need to find a cure.
     That's a dismal way of starting every day. Babies wake to loving parents, breakfast and if they're lucky Yo Gabba Gabba. However, I'll be damned if I'm going to wake up to a depression, taking stock of the shit I can no longer do. I'm going to take anxiety meds when I want, pain meds when I want and eat pot whenever I got it. I'm going to communicate with friends and family as much as possible while I can with my eye-gaze. Most importantly I'm going to focus on the Grace moments that still litter my life and encourage others to find the Grace in their lives.    

Hermit No More

     The last few weeks I've felt like a hermit. Besides a trip to Target or the grocery store my life had basically fell into a very predictable routine. Not only was I physically doing the same things over and over, I was letting my anxieties take hold of my emotions and I stopped trusting in those that I should while doubts guided my thinking. I was in a state that I didn't belong, where I was very uncomfortable. I severely slacked off in my relationship with God. I was falling back into a pissed off relationship with Him, one where I fell away from His word. I was expecting an OnDemand God, where He would see me struggling and snap His fingers to get me out of my rut. I thought we had these guidelines in place now. The guidelines being I will continue to praise your name in the face of ALS, with God providing me with lavish  rewards along my journey to keep my faith strong. Seems reasonable right? Maybe if I were selling smoothies, shoes, or something material and I was making a deal with my boss, then yes. However, we're talking about the creator of the universe, God who sent his son to die for all of our sins. Perhaps, even with having ALS, I over stepped my bounds in expecting a God who would make deals with me.
     Our Heavenly Father doesn't work like Instagram or Snap Chat. You won't get that immediate satisfaction and response most of the time. This isn't because He's busy helping others or ignoring you, He's always there next to you to provide comfort and support.  What He's offering you at that very instant may not be what you're looking for at that second, or that day, week, or even month but what we have to remember is that we aren't the ones calling the shots. I didn't have anything to do with creating my own existence, I didn't create the fabric of our glorious Earth. I didn't pave the path that lead me crashing into the love of my life, or the path that lead me to my career, or the paths to my best friend's hearts. I also didn't have any control over the darker paths I've walked. Loved ones dying, my ALS diagnosis, anxiety fits, failures and heartbreak. You may not recognize all the incredible work God has done in your life, the love He's poured over you, the paths He's mapped out for your life, an extensive amount of work goes into YOU. God loves you. Once you recognize all you have is because of Him, you'll realize He's all you need going forward.  

 Much love goes out to Michelle for helping me pivot my focus and get back on the writing horse. Cheers readers!

   

       

Caregiving: By Michelle

On Friday educators from my school had a professional development day. The afternoon session was an opportunity for the teachers to choose something that interested them most.  I found myself in a session about Compassion Fatigue—how caregivers and teachers (or otherwise) give everything they have mentally, physically, spiritually and sometimes financially to a person or job and in return have compassion fatigue. We talked about how someone who takes care of a terminally ill person or student with severe trauma all day or for several years may take this trauma with them throughout other parts of their life or feel bitter towards people who have never seen or experienced such.  People who are caregivers may feel guilt or doubt because they carry the burden of never doing enough.  Throughout the session I continued to think how this not only fits in my professional life but also my personal life.

            I sometimes feel like I am more of an ALS caregiver and advocate than anything else. I leave the house and wonder if Kris will do ok without me. I send multiple texts throughout the day checking in (before he is even awake). When everyone is talking about happy hour and dinner at the trendy new restaurants after work all I can think about doing is getting home to be sure that Kris isn’t left alone for too long. I am his wife, caregiver and nurse from the minute I walk into the door. Even while I sleep. I often have to wake up to move a leg or arm.  When someone asks us to go somewhere outside of the house a million questions begin. How far away will we need to drive?  Is there handicap parking? Are there stairs? How loud is it going to be? Will there be food Kris can swallow? What happens if our van breaks down?  Are the bathrooms big enough for a wheelchair? How cold will it be that day?  Who will be there? Will he get anxiety?  I have to be thinking what is best for Kris at all times and sometimes that means passing on what seems most fun to the people around us who don’t deal with ALS 24/7.

            The Grace I have found in having a husband with ALS is that he doesn’t mind if I take an hour to myself. Kris suggests I get out to get a manicure or have lunch with a friend.  I love that Kris and I always have dinner facing each other. Everyday when I get home from work Kris greets me with a kiss. A night in to watch Netflix and chill is always ok with him. We communicate better than couples that have been married 30 years. I’ve learned to be more patient. We treat each day as if it could be our last.  Overall, I’ve learned that everyone has issues they’re going though.  And most importantly, I’ve learned that I can’t do this all on my own I must trust in God and his plan for my life, regardless what that looks like.

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.

   

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.