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.

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.   

Magnificence

     I spent the morning in a self-implosion mess. I have these mornings every now and then, I mainly attribute them to the expiration feeling that haunts those with ALS and the fact that I know I drift from God. There are times and places where I feel intertwined with God. My kitchen where I make calls to healthcare service offices, send and respond to dozens of emails and messages, advocate and fundraise for numerous ALS organizations is not one of those places. I let stress and caffeine take over and spiral away from my happy place to feeling more like a superficial cog in a pointless wheel. Yet, only a few days ago I was in that place where I was intertwined with God. I saw a magnificent reminder that our lives aren't random, that our dreams for this world fall way short to God's plan. I was immersed in nature in Door County.
     Naturalist E. O. Wilson said, "nature holds the key to our aesthetic, intellectual, cognitive and even spiritual satisfaction." Yes Door County is inhabited by many kitchy shops, restaurants and wineries for tourists to flock, but it also has one of the more diverse and fragile ecosystems in the country. God's presence is felt when you see the Sugar Maples, American Beech, Yellow Birch, Eastern Hemlock, Ironwood and Red Oak trees that litter the peninsula. There are thousands of wildflower species growing in every direction, sometimes right through rock. Dozens of violets, Trout Lily, Jack-in-the-pulpit, Dutchman Breeches just to name a few. There is 75 miles of coast on either side of the peninsula where the water is clear as glass ready to reflect the most beautiful colors you've ever seen. Creeks and wetlands with fish, toads, turtles, dragonflies, Blue Herons, Bald Eagles, fox and white tailed deer visit. Sunsets where you feel God's presence in the arrays of colors that plaster the sky like a masterpiece. Every season offers magnificent beauty and serenity. Proof in every sight that we are not in control and that not having control shouldn't be scary but should bring satisfaction. It's also proof that God prefers diversity in his aesthetics, that differences should be celebrated.
     On mornings like this one when "control" feels like it's slipping through my fingers like sand I need to hit pause and reflect on the aesthetics of this world. Glimpses of the beauty and serenity I will one day be immersed in forever. No stress, no pain, only intertwined peace, love and magnificence. Grace all around.

Pictures : Top;tree intertwined with creek bank in Fish Creek. Bottom; Sunset in Ephraim, Wis.

Battle

     I've been brainstorming how I can make my Ice Bucket Challenge this August one for the Hall of Fame. How hard is it to rent an elephant? Should I wear a banana hammock? Do I know anyone famous? I am sincerely proud of the grassroots movement the IBC has become. The millions raised around the world and the thousands raised by the Gronk's Grace Army is nothing short of spectacular. The fight and love shown by so many has led to the discovery of the NEK1 gene that associates with ALS and gives researchers a target for genetic research. This is a paramount discovery and something that should be celebrated.
     However, this discovery is not a cure. It is not a treatment. People just like me will die every 90 minutes today, tomorrow, and the days after. This is a viciously complex disease that is attacking us all differently but with the same certain outcome, death. Millions of dollars are still needed to bring potential treatments to clinical trials. Advocating to Congress and our local officials is crucial to change medical policies blocking immediate care for those living with ALS. The same passion for grassroot movements like the Ice Bucket Challenge and the #WhatWouldYouGive campaign are essential for our ongoing war on ALS. We may have won a battle but the war is far from over.
     If you want to be a part of the solution and help those with ALS who desperately need your help, consider being a part of these awesome endeavors. 
Take action with ALS TDI
Register and donate to the Rockford ALS Walk
Join the What Would You Give Campaign

God's Grace be with you. 

Duct tape

     A week ago I went in for my three month Dr appointment, these appointments could be monthly but after I describe an ALS clinic you'll understand why I don't go every month. Clinic starts the same as any appointment, nurse checks your blood pressure, asks you about allergies and where your local pharmacy is located, you know, the basics. That's where basics end. Now it's time to run the gambit. Dietitians, speech therapists, social workers, breathing coordinators, occupational therapists, wheelchair technicians, and your neurologist are all coming your way. Don't get me wrong, I'm blessed to have them all at my fingertips in one location, most people with ALS aren't so lucky, but it sure as shit is intimidating.
     All of these professionals sit with you and run tests, ask questions and discuss what you can and can't do anymore. Unfortunately for us with ALS, the can no longer do list always increases while the can do list gets shorter. Medical professionals have the challenge of fixing people when they are broken. However with ALS, because there isn't a treatment or cure, they are left with very few tools for a monumental job and they know it. I feel at times like an airplane they're trying to keep in the air when the wings snap or they lose an engine, with duct tape. They aren't giving up on you but they also aren't going to be able to keep the plane fly worthy for long.
     This is where you as a patient start making some tough decisions. Do you want to be covered in duct tape? A little duct tape might be okay, maybe? Try a c-pap machine while you sleep, maybe a new steering column on the wheelchair, maybe cutout French bread from the diet to avoid choking, these appointments turn into giant brainstorming sessions to try and fix you, while knowing the inevitable isn't promising. For three hours you have to actually acknowledge you have a terminal illness and decide how much duct tape you are comfortable trying. I usually leave these appointments pissed, wanting a stiff drink. The Grace catches up to me later. I remember that I have hundreds of people looking out for me, I can still blare music, drink beer, speak, write, and love. The Grace still outweigh the "can'ts." Bring it on duct tape.

Want vs Need

     The good old dictionary defines want as something that is desired,  not substantial or necessary. While it defines need as something that is necessary and substantial, the serious twin that was born moments before Want and never let's him forget it. As an elementary teacher I've spent lots of time discussing Wants vs Needs with kids. We would always do a graphic organizer to compare the two and hopefully walk away from the experience understanding how great we have it and thinking about how to focus more on need. 
     I just spent the last week in NYC steps away from Times Square and some of the most lavish experiences one could imagine. Everywhere you look in downtown Manhattan there is a want. Designer sunglasses that are way cooler than yours. Artisan red velvet cupcake bites, champagne with your eggs, Cadillac Escalade upgrade from your typical yellow cab, imported espresso shots, Maine Lobster at dinner atop the Empire State Building. You quickly get caught up in the wants and start smearing wants all over your needs. We cashed in on the once-in-a-lifetime experience and indulged on the want's as one should do.
     When we returned to our quieter, slower paced lives here in Loves Park my mind shifted back to the needs mentality, at least for a few short days. I often daydream about wants, like we all do, it's human nature. I want to be able to grip the steering wheel, punch the gas, and drive for hours, when what I need is to escape. I want to cut up vegetables, I want to throw a baseball, I want to run a 5k, I want to dust in the living room, scratch my nose, pick up a taco, when what I need is to eat. Shotgun a beer, stroke Michelle's hair, I want my ALS progression to cease and just fuck off. The reality is dwelling on these wants, wants that many think are needs, doesn't get me anywhere. ALS has made me say goodbye to many things I want to do and there's nothing I can do about it.
     ALS can't control my mind and how I perceive life around me. I can pay less attention to my wants and hone in on my needs. My need to embrace the time I have with my nieces and nephews. My need to stop taking the Lord's name in vain. My need to acknowledge those close to me who have sacrificed much on my behalf. My need to forgive, write, advocate, laugh, explore, listen, love and embrace the tremendous Grace that surrounds me.

Father's Day

     Happy Father's Day dads. In my 29 years I have met and been molded by many terrific fathers. Grace guy dads, coaches, teachers, the good years I was able to spend with my own dad and good, old, Poppa Jamerson. My father in law Donnie, who I now call Pops has been a remarkable role model in my life during some formidable years. Firstly, he trusted me with his daughters hand when I asked his permission to marry Michelle. He has picked me up and brushed me off when I've made a complete drunken ass of myself. He has rallied in my corner and fought ALS tooth and nail with me. He loves harder and more passionately than any other man I know, and for that I'm proud to be your son in law.
     Lon Grahnke was my dad, and this September will be 10 years since he passed. I remember my dad differently then my sister Eliza and my brother Kurt. Due to Eliza's disability, she only remembers the happy go lucky dad. Kurt, due to his age really only experienced the tough times with Dad. As the oldest child, I have a more rounded recollection of Dad. I knew him as a sociable protector, the big guy who would engage with anyone and wasn't scared of anyone. The guy who worked his ass off to help me be the scrappiest baseball player out there. Analyzing 9 year old pitchers so I would know when to take pitches and when to go yard. I also experienced the years he struggled with alcohol and would come home hammered or we'd pick him up at the police station. I also vividly remember when my mom explained to me as a young teen that my dad had early onset Alzheimers. I watched the total bad ass I knew as Dad wither away. I argued with him about why he shouldn't eat vegetables out of the can, I had to tell him that grandma was related to him, and shove him when he questioned who Kurt was and would get aggressive with a 10 year old.
     I share a lot of attributes with my old man. We both have very round heads, we will never give up on the White Sox, we're both stubborn to a fault, and unfortunately, we both have had to fight ferocious neurological diseases. Dementia took Dad out. He fought it like hell, he found God along the way, he did his best to embrace the things he held near and dear to his heart before his mind quit on him. I fight ALS day in and day out the same way. Having a parent with Altzheimers has given me an odd perspective. As terrible as ALS is I can still take solace in knowing that my mind won't ever give up on me. As I read back through this post I realize it isn't exactly one of my happier posts. But then again, everything in life isn't happy. However, you can always find Grace in life. Sometimes it slaps you in the face, other times you have to reflect before it comes to you.
     The Grace I clearly find in my experience with Dad's is that sometimes you have to experience the extremely tough times to appreciate how great life is now. The tough times show you how important it is to thank God for the ordinary. The ordinary is extraordinary as far as I'm concerned. Do I wish things could have been different with my dad? To an extent, but without the hardships my family endured we wouldn't be the awesome people we are today, and I sure do love being awesome.      

Exhale

     When you can't move your arms, walk, feed yourself, turn the pages of a book, toss a ball or any other physical activity involving your limbs you are literally stuck. ALS will eventually take these abilities away from everyone who is diagnosed. I feel stuck at times. I scream obscenities, lash out at loved ones, and stray from my faith. But then there are days like today. Today I accepted the stuckness and turned my thoughts to the things I can still embrace and enjoy.
     It's been said that people with ALS have heightened hearing, vivid and precise eye sight, bigger hearts to love and greater compassion. This might all be bullshit and scientifically inaccurate, however today I certainly can feel and embrace these sparked sensory experiences.
My beer tastes sweeter, the tunes are crisper on Spotify, the breeze in the trees seems to have purpose, food tastes fresher, I can hear God's whispers. The abilities I've lost have forced me to focus on the small stuff. The stuff we often forget to make time for and certainly take for granted. Today I'm taking stock in the Grace that surrounds me. I invite you to hit pause and do the same.  

I am

     I spent the entire month of May advocating for individuals with ALS. I went to DC to raise awareness of the disease and plead with politicians to support initiatives that can potentially save the lives of thousands of people. I raised awareness through social media with articles, facts, personal stories, multiple Facebook shares, some funny and some sad. I appeared on the news to talk about walking away from teaching due to ALS and hopefully snagged some community support. I packed up my classroom for the last time and "retired" all because of ALS.
     I know I made an impact during the month of May. I had a lot of fun, met wonderful people, and strengthened relationships. But I also feel like I lost myself a bit in the fight, the excitement, the cause. I feel like I became ALS. I am not ALS. I am a force to be reckoned with. I am a friend. I am a White Sox fan. I am a beer drinker.  I am sarcastic. I am a husband. I am an uncle. I am diverse, joking, confident, good, emotional, arrogant, judgmental, a sinner. I am also saved.
     I received many prayers for relief from this disease in recent weeks. Many condolences, many tears, I received many forsaken looks and pats on the back.  Do I wish I had my abilities back? Of course I do. Do I hate the suffering ALS brings on families? Damn straight. Do I want a cure for ALS? More than anything. However, this disease did reel me in from the abyss. I was living an enjoyable life, one full of friends, family, a career, I had the stability we all seek, but I was missing substance. This disease made me find myself and redefine the man that I am supposed to be and why I am still here. Though the hardships are obvious and tremendous, they are temporary. Thanks to my rekindled relationship with God I am living for the eternal life. I am here to be an example of love and Grace. I am His.      

Community

     I turned to the dictionary for a definition for community to tie my whimsical ideas of a community together into something concrete, but only found dull and simplistic definitions. What Michelle and I experienced this weekend wasn't dull or simplistic, it was powerful, uplifting, comforting, and loving.
    Dozens of friends and family converged on our backyard to give it a total makeover. We had 400ft. Of fence that needed to come down. Flower beds overflowing with weeds, dead trees that needed to come down, numerous other jobs to be done. This was a monstrous task to take on, one that Michelle and I would never be able to handle on our own. However our community rallied behind us and uplifted our yard and our home to a level we only dreamed of. Not only did people close to us shower us with grace and love but complete strangers joined the army to make a tremendous impact. Rock Valley Fencing sent a 6 man team on a Saturday morning they normally wouldn't work to build my fence with free labor. Dudes I'd never met working their ass off for what they said was a family in their community and communities lift each other up.
     Watching fellow teachers, neighbors, family members, friends, even friends of friends and children rally behind us to make such an impact while also enjoying one another was such an incredible thing to experience. ALS not only physically attacks you but also wages war on your emotions. Worry and fear have a way of blindsiding me when I'm most vulnerable, like in the middle of the night when I have nothing to distract me. Last night I woke up in the middle of the night, only I wasn't filled with worry, I was filled with peace and love.
    Many would say I've been dealt an awful hand and should be filled with grief and resentment towards God, but after this latest example of Grace in my life I can say with certainty that my life has a purpose, support and love is plentiful and my community is far from dull and generic, it's exceptional.

Retirement

    If you were to tell me after I graduated that I'd be retiring at 29 I would have figured my lucky loto ticket hit the Powerball. I would start hooking up my family members with bank accounts to give them financial security, buy Kamm that new Camero he deserves and get a piece of land on the west side of Washington Island to build a perfect getaway.
    Unfortunately I didn't hit the Powerball. ALS came crashing into my life throwing haymakers that slowly stripped me of my independence. I started this school year with strong and capable arms, and now I can't feed myself, zip my fly, or navigate a smartphone. It's as if I have spatulas for hands.  Imagine trying to use a spatula to use your phone without lifting your arms.
    If you know me well you know I'm a stubborn son of a bitch, so as my arms became weaker and I lost small motor skills, I compensated in other ways. I taught myself to be a lefty, used dictation on my phone and ate food from a bowl like a dog. I had to compensate at work as well. Being a teacher and not being able to use your arms is tricky. I can't pass out papers, type on the keyboard, point out directions for my students, my can'ts outweigh my cans. Even with all the things I can't do I can still connect with my students and advocate for them. I can "stand" in their corner when no one else does.
    Making the decision to retire from teaching was by far the hardest call I've had to make. For the past 15 years working with kids with special needs has been my passion. I've met some of the coolest kids, made lifelong friendships, and made a significant difference in multiple school districts and kid's lives.
Most folks tear up when I tell them I won't be teaching full-time next year, but this blog exists to shed light on the Grace that surrounds us even in the worst of times.
      For starters, I can find grace in the fact that ALS can't keep me from tutoring kids, loving kids, and making kids laugh. I can find Grace in knowing that this break from teaching will allow me to advocate like hell for others living with ALS with backing from my Gronk's Grace Army. Finally, I can take the time to pour love into my relationships with the people I hold so close to my heart.

    This blog was brought to you courtesy of my amazing eye-gaze technology called a Tobii dynavox . I set up my music playlist, opened my blogging app, and typed every word without lifting a spatula.

Gronks

He is Risen

   This is the day that the Lord has made, let us rejoice and be glad in it. I've been naive to how important Easter truly is or what those words mean. Jesus experienced one of the most painful deaths imaginable and did so to save us, we who truly do not deserve it. Then he went on to perform the greatest miracle of all time in the resurrection. Conquering Death.

    Jesus' resurrection built a bridge between our sinful and torn day-to-day lives and tied us to the hope and love that God can bring in our life now and in heaven with Him. I know that these are powerful words, words that come straight from the Bible and from a pastor's mouth, and those words can be hard to relate to on a daily basis. I struggle day in and day out, I wrestle with doubt, and at times even hatred towards God for allowing me to have ALS, for taking friends too early, for my dad dying, and for the strife that has been in my life and the lives of those that I love. However, when this fear and anger takes over and this darkness falls upon me, Christ and his hope and his love find a way to push into that darkness and make me realize that even the death that may soon be upon me cannot consume me or leave me scared. My pain has a purpose. I have to take glory in my suffering because that suffering will produce perseverance; perseverance; character and character; hope. That hope that I carry with me every day erases the fear of death that I have, it lets me see and embrace the grace I have around me and it makes me confident that my Lord and Savior Jesus will be standing on the other side of death when my time comes. He will take me to paradise away from this life of pain, tears, and anxiety. He is here for us all now and forever. 

    God bless all of my readers, and I hope that you have a wonderful Easter with your family and friends. With love, Gronks

Twilight Zone

     I just left work and I'm screaming out of the parking lot in my car. Music is blaring and it's a beautiful day. I'm ready to go to the gym. Once I get to the gym I'll run a couple laps, lift some weights, and get some good stretching in before I head home. Once I'm at home I'll take a nice long shower, Michelle likes to sit in the bathroom and talk to me about our days when I take a shower so that will be nice. After that I will cook some garlic parmesan encrusted chicken with some spinach for a nice home-cooked meal. Then, we sit down to eat I'll do the dishes and maybe chase Wrigley around the backyard. Finally I'll crack an ice cold beer and cuddle up next to Michelle for some mindless television with the warmth of her hugs and the sweet smell of her hair pressed against my chest.

     Oh, wait… No I won't, I won't do any of these things, as much as I would love to, and as much as I dream about doing that every day, it doesn't happen with ALS. Rather, I will sit and wait at work until my ride can leave and can take me home because I can no longer drive. Once I get home, mind you I had to skip the gym altogether because that ain't an option with ALS, I will have to watch Michelle make dinner. Even though I would love to help her. When we are ready to eat she will have to feed me. I won't be able to help her with the dishes, and I won't be able to chase Wrigley around the backyard. I will be able to watch mindless television, but I will have to sit in my wheelchair next to the couch with an armrest in between. Michelle and I missing the embrace we once were able to have. I can't use the bathroom on my own. I can't go to bed when I want.  It all has to be with someone else's assistance! And when I'm stressed and want to blog about it I can't even use my hands anymore! There isn't any way to sugarcoat this, it just flat out fucking sucks. 

     But, I refuse to wallow in my sorrows, let ALS rip everything I love from my grip, I refuse to lose sight of the grace in my life. I still have great friends that get me to and from work. I can still take that relaxing shower, though it might be sitting down and someone else lathering me up with soap. I can still drink that ice cold beer (through a neon straw.) I can still enjoy that home-cooked meal with my wife. And though Michelle and I don't cuddle the same we have found ways around it. Let's be honest, I can't keep myself away from her. Grace is still all around me, I just have to remind myself to pause and look around and find it.

IronHorse Courage Award Speech

The night was incredible! Thanks to everyone who came out last night and supported us. I can't wait to do it again!

First and foremost I'd like to thank the Chicago chapter for their tremendous support of my family and dedication to making my life better. 

I am conflicted up here on the stage. I am very honored to receive this award but at the same time I really wish I  wasn't because then I would not have ALS. What I do wish is that my legs still worked, my arms still worked, then I could be out there on the dance floor juking with my beautiful wife. But, due to ALS that is no longer possible. Instead, I'm confined to this wheelchair, someone has to hold my speech out in front of me, and later when I got to take a piss thanks all these beers someone will have to unzip my fly and help me pee. ALS can kiss my ass.

I've been an advocate for others ever since I was a little kid. My little sister Eliza has Down syndrome and when we were younger I was the only one who could understand her. I would translate her delayed speech to my parents, friends. 

This advocacy for kids with special needs translated into a career as a special education teacher where I continue to advocate to this day for individuals with special needs. I've always fought for the underdog. You can make the case that I'm the underdog now. 

ALS robs you of your strength, your hobbies, independence, the list goes on. It's hard to face the diagnosis and keep fighting when it feels like everything is being stripped away from you. 

I've found courage in this fight against ALS in my beautiful wife Michelle. Don't let her small stature fool you, her faith in God, perseverance, and advocacy for me and others with this disease are tremendous. 

My Gronk's Grace army that gathers its forces at a moments notice for anything, whether it's a beer and an ear after a brutal day or a commanding turnout at the Walk this fall, their courage, love and dedication is infectious. 

The prayers that have showered me from thousands of people, some I know well, others I don't know at all have lifted me to keep fighting. Knowing that my pain has a purpose. A purpose I don't fully understand but can fight for. 

What I know for sure is the courage This underdog has is not self-created. Michelle's pure love for me, the overwhelming advocacy from my friends and family and the support from God have given me the courage to use this disease to make a difference. This underdog still has a lot of fight left in him. A fight that I'm going to use to keep advocating for people with ALS. ALS can't win, because I've already won.

Thank you, God bless.

Cheers Fam!

Band of Brothers

    On this snowy Valentines Day, this day of love, Chelle has her flowers, we're getting take out and enjoying a nice fire, but I'm not thinking of romance, I'm thinking about brotherly love.

    This war that I'm fighting against ALS is a grueling one. I'm in the trenches every moment of every day. In the trenches with me are some brothers that need recognition. Brendan, Kamm, Tim and Adam are decorated soldiers in this fight. 

     Brendan is my right hand man. My driver, beer orderer, bathroom attendant, the man has seen things I'm sure he wishes he hasn't but stands strong right next to me in the most embarrassing of times. 

    Kamm, a man of few words, but not when he's with me. Kamm is my trusted adviser. "Does this hat look tight?" "What beer should we get?" "Can you make the playlist for the party?" "How do I tell my family I have a terminal disease?" He always knows what to say, how to guide my actions so that I come out looking good and when I need a pick me up. He has been here from day one.

    Tim, a man of extensive knowledge, though 5 years my junior the man provides research and support constantly. In house dentist visits, up-to-date ALS research, even shoulder rubs, the guy is my medic in the trenches. He's always there for a good laugh and keeps my spirits high.

    Adam, a brick shit house, towering over me at 6'5", is my muscle. He fixes the numerous things I can't, creates accommodations on the fly and can lift and toss me anywhere I might need to go that my wheelchair won't go. Not to mention he brings an intimidation factor to my entourage.

    This band of brothers is a crew that shows up time and time again. They don't need to show up but they do anyway. I love them for that and I truly appreciate them. Cheers brothers.

Happy Birthday

   Beep, beep, beep, it's 4:58 in the morning. Time to wake up the dog, feed him and let him out. Make Kris his breakfast and remember to make the pieces of the muffin small enough that he can eat them without his hands and that his straw is bent so that he can reach it without help. You have 17 minutes before Kris needs to be up so enjoy your sanity on the exercise bike. Scroll Facebook, check Timehop and start a podcast. 

     Shake Kris awake from his coma, cross his arms and legs so you can roll him on his side. Then lay his netting behind him, roll him back onto the net and pull the auto-bed lift into place. Strap him in, all eight straps and press the lift button. Make sure not to crush his junk, he hates that. Lower him into his chair and then unhook all eight of his straps. Grab his Old Spice, lift one arm at a time and rub it in. After he changes his mind multiple times, help him put on his shirt. 

Feel for Chelle yet? We ain't even at the bathroom yet! 

     Put toothpaste on his brush, brush his teeth, he'll complain you're being too rough, then scrub his face. He might complain then too. Once he's in place, pick him up and put him on the toilet. While he's taking a number 2 go take a shower. Brush your teeth, dry your hair, start your makeup and then go help him clean up and get off the toilet. Sounds fun right? Help Kris put his pants on, making sure his fly is lined up so he can independently pee later. Put on his shoes. Continue getting ready for work, Kris will eat his breakfast. We forgot his coffee, he's an asshole without it so quickly go make it.  

     Help Kris put his coat on, give him his lunch you made last night, and start the car for him. Fill Wrigley's Kong with peanut butter before you join Kris in the car. 

     This is 5 days every week, no matter what. Michelle does this graceously, tirelessly, for me. This amazing woman saves me day in and day out. She loves me unconditionally, kisses and hugs me and looks smoking hot everyday. The Grace I see and receive from her is never ending. I love you Michelle. 

Locked Up

      Everyone is having a panic attack these days over Making a Murderer, me included. I watched it all, read fan theories on Reddit and even considered signing the petition to get Steven Avery out of jail. I thought about how it must feel to be locked up, in isolation, for something I didn't do. How mad I would be, pissed at the world, fuming, ready to explode. Then I realized Avery and I have more in common than I immediately noticed. Don't get it twisted, I've never been anywhere close to a sexual assault, nor have I met someone who then wound up dead mysteriously. I have however been shackled and held against my will. I wake up and go to sleep shackled every day.

      ALS has me living like a criminal. I have no control about when I get out of bed. I have to wear certain pants and shoes that my wife has to put on me. I am essentially shackled to my wheelchair every minute of the day. My meals rely on someone else to prepare and feed me. If the remote is out of reach TV ain't happening. I no longer can go for a drive and people tend to stare at me when I'm in public. ALS tries to push me closer and closer to solitary confinement everyday.

      It would be easy for me to say fuck it, give up, blame this pain and suffering on others and God. To be honest, the "f^€# it" comes out of my mouth more times than would like it to. When it does my wife who is far smarter than me points me back in the right direction, directly back into the word of God. I take solace and comfort in this verse, "Blessed is the man who perseveres under trial, because when he has stood the test, he will receive the crown of life that God has promised to those who love him"(James 1:2). I dare anyone to say I'm not under trial, maybe not a trial like Steven Avery, or OJ,  but I can still hang my hat on that verse, it gives me a daily dose of Grace.