#HolySpirit

     Yesterday was a, "fuck you," day. I experienced bone crushing and emotional pain, pushed to the precipice where one more tear would have pushed me into the dark abyss, but then my wheels spun in reverse and I was surrounded with smiles and my blood pressure lowered. Another day, weeks back, we were shopping for home pieces for our remodeled bedroom at Bed, Bath and Beyond, it takes a pro for the record to drive through there and not break shit. We came across an aisle with a huge mirror. I was at first distracted by all my new stickers, but then I noticed the skeleton body that was sitting where a pudgy man used to dwell. Every ounce of salty water and snot poured from my face like Niagara Falls. Where'd I fucking go? Am I going to disappear? I'm a hot mess in a damn B.B.B.
       Don't get me wrong, I've had a damn good summer so far. Gronk's Grace held an incredible car show, raised hella bank and put a stamp on the community. We have also made great improvements to our home and my relationship with Michelle has become even stronger after dealing with concerning medical news for her. Long story short, don't fuck with the Grahnke's. I've had to pass on concerts, beer due to medications, loud events are torture because no one can hear me, it's been a summer of transitions and that's been incredibly draining.
     ALS killed my good friend Matt a few months back. Matt and I would text a lot. ALS took Matt's voice first. He gave me tips for handling mouth stuff I gave him arms and legs tips. We also talked shit about the Cubs and Sox, how hot our wives are and the best drug concoctions, then one morning he was gone. I cried, but in this fight against ALS when you lose someone it really feels like you lost a soldier on foreign soil and now they get to go home and I know Matt's home is Heaven, thus my tears were short lived.
     Lately one could argue that I've hit a rough patch, after all, the saying is every time you see someone with ALS, you are seeing them on their worst day because there isn't a cure for ALS. I'm calling bullshit dude. There have been days far into this experience where life has far exceeded my expectations for love and connection with Christ Jesus. His glory and connection to you doesn't come through things. "I lost 10lbs, check out my Lexus, nothing but organic for dinner," #blessed. Right on, those things are awesome, but you were #blessed long before that. The Holy Spirit is with me to ease physical and emotional pain, pat me on the back, guide my social media, basically be a spiritual wingman. Why wouldn't you want one of those?

 

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What Did You Say?

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

  

Summer Chapter

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

 Bluffs around Devil's Lake, Wisconsin

   

Time

      Time is one hell of a concept. Time drives our society. We rely on gadgets like clocks, watches and phones to keep track of time and we trust that these tools will do their jobs because time is precious, so precious that some people pay big money for gadgets to tell time down to the exact millisecond. Time is precious, we're told from a very young age, even before we truly understand,  that it's bad to waste time. Folks can argue forever about what activities are a waste of time. Michelle and I used to argue over whether video games were a waste of time. I thought not because they relaxed me, but I also thought watching a TV series over and over was a waste of time, but she saw it as therapeutic.
      There are millions of things that you can spend your time doing during your lifetime. Some things are necessary to increase your quality of life. It is absolutely necessary that you spend some of your time eating, sleeping, cleaning yourself. How much time you spend on those necessities is your choice. Your job plays a huge role in the amount of time you get to allocate for everything else. Exercising, social media, taking kids to practice, errands, visiting family members, book clubs, car repairs, Starbucks, play dates, taking pets to the vet, home repairs, dinner dates, online shopping, fantasy football, vacations, church. We know time is precious and that's why we pack so much into the free time that we have. Before I was diagnosed with ALS I stayed busy. I liked to socialize especially to keep busy, I was always flying by the seat of my pants, then ALS struck and that flying turned into a crawl.
     That precious time I didn't want to waste wasn't moving as fast anymore but at the same time it was fleeting because no one survives ALS, my time-stock took a major loss on the Dow Jones. So after the initial shock of diagnosis wore off I turned to the Master of Time himself; God, for answers. I brushed up on scripture, listened to podcasts, talked to friends in Christ about what this loss of time meant. Now, I could throw myself a pity party about how my time on Earth had been cut short and now is the time to fully focus on myself, like a coward, scared what's around the corner, or I could stand strong in God's promise that Heaven has everything my soul desires and needs. Essentially flipping the scrip. I no longer cling to every moment as one I wasted or will never get back, I now see those moments as intentional morsels of Grace given by God.
     Feeling so blessed, with time slowing down for myself I have been able to reflect on why time is so precious. It's not there for you to pack until you burst, it's there for you to help others, it's there for you to give glory to God, it's there to reflect on the blessings you have. You may think what I'm saying is irresponsible because society screams at you to live your life to the fullest! I would argue that my way is doing just that. Heaven is our playground where time ceases to exist and we can do whatever it is we loved on Earth and what we can only imagine. No more need for planners or gadgets. You'll just be. And if you can't picture this in your future, maybe it's time to set aside that precious time and strengthen your relationship with God. He always has time for you.

Sunset near Egg Harbor, Wisconsin.

Letting Go

       Public Service Announcement: This blog will make you cry, laugh, gag, reflect, and hopefully leave you feeling closer to our Lord Almighty. I've had some rough weeks here and there. I've been trying to figure out medication, how long I should be on my bi-pap, all the while trying to get excited about a liquid diet. This has been tiring as hell. I spent all day Saturday in bed and just wrapped up another all-day shift yesterday. In the midst of this cluster fuck I became extremely constipated and couldn't pee either. Hospice nurses to the rescue! Oh, wait, you have to do what?!? Hell naw I thought in my head but I had to let go and let the pros do their jobs. I needed a suppository and a temporary catheter. Those are two items that go the wrong way on one way streets. A suppository feels like a thumb tac on your booty rim and a catheter felt like a silly straw forging it's way down my golden street. It fucking sucked, I hated it, but it would have been a disaster had I not let go.
     As many of my readers know, I am the oldest sibling in my family, the big brother. I'm six years older than Kurt and four years older than Eliza. Not only am I the Big Brother to Eliza and Kurt I have many younger friends who look to me as their Big Brother. A friend of mine once said that wherever I go I cast nets on those that need help, reel them in and see if there's anything I can do for them. It could be a soccer mom, an elderly dude, a young adult with disabilities, the scary gang banger on the L, or the beautiful damsel in distress. I could talk to anyone and connect with them. Many of these nets I quickly let slip away, but dozens of these nets I kept an eye on over the years and regardless of their age I consider them my younger siblings, or at least someone I have to protect. This large extended family I've built makes it very difficult to be okay with letting go of this world. Not to sound conceeded, but I think about what my little sister will do without me. What will my fantasy football league do? What will my teachers do without my advice?

The answer is they will be fine. 

      People die. We're all going to come to the same fate. Whenever I die, I'm going to be showered with love. I know so many awesome people that I can only imagine what the Celebration of Life will look like. Many folks aren't so lucky. Either they haven't found Christ and accepted Him as his Savior or they don't have have a support system around them and are incredibly lonely. I'm generalizing, but it brings me back to the importance of solidifying that relationship with the Lord. It's easy to stray from His path when things go wrong. Job in the Bible lost everything. His land burned to the ground, his wife and children died, and still he kept his faith. Paul traveled the globe proclaiming God's Grace while he watched his friends be murdered and while he got his ass kicked. 

      "Many are the plans in the mind of man, but it is the purpose of the Lord that will stand."(Proverbs 19:21) I've got plans galore. I've always been the dude to create social plans for our group. Where we're going, making the reservation, making sure everyone has a ride, making sure that asshole won't be there. However, I've retired from the planning game, I've let go. The Lord has a purpose for me, that purpose might be here on Earth in the next few months, or it might be in Heaven. Either way this Big Brother has let go.   

Zzzzzzz

     I have found myself sleeping a great deal more lately and I haven't been able to put my finger on just why that is. Rather than do research and freak myself out I reached out to my homies around the country who have ALS and asked them what their sleep schedule looks like. One dude is apparently Superman because he goes to bed late and gets up early. If I did this my poor caregiver would be mobbed by obscenities. Another buddy was completely different. He said he goes to bed when he feels like it and might not even get out of bed the next day until dinner. Mind you, these dudes are similar to me, relying solely on their caregivers for essentially everything.
     The last week or so I'm ready for bed at 7pm. It's definitely disheartening because the sun is still out and I know beautiful evening weather is just around the corner. Once in bed I rarely pass right out. My body stretches out fully, pressure points change, and I put on my space mask (aka my bi-pap). Once my space mask is on I usually get my cuddle on with the wifey, either watching How I Met Your Mother, Teen Mom, or MTV's: The Challenge, all awesome shows so don't bother hating. Once Michelle calls it quits we set up something for me to watch that will stream without needing to touch any buttons on my phone and will eventually time out around midnight when I fall asleep. Now in the morning, I'm typically awake by 9:30, so I clock about nine hours of sleep but sixteen hours of wearing my space mask that gives my lungs a break and chance to recuperate. Then, depending on the day, Emily or Michelle give me morning meds in bed, followed by leg and arm stretching leaving me in bed streaming something again for at least another 90 minutes.
      As I read that back that's a hell of a long time in bed. I wish my body didn't need that kind of recovery time. However, the moment I pity myself I think about the thousands of people with ALS who are confined to their beds all day, or who don't have a wheelchair equipped like a James Bond car to get around in. That's when I talk to God and ask him,  "how I can make an impact today?" As I've stated before in this blog, by the Grace of God I will use my wakeful hours to advocate for others with ALS and the less fortunate, I will raise money for a cure, even if I don't get to reap it's benefits, and most importantly I will spread love and joy through God's word, loudly and tenderly right before I close my eyes.

Backed Up

   

     Recently I've been transitioning to a softer diet to eliminate chances of choking on my food. This doesn't mean I'm sitting back being fed baby food puree, although it may feel like it at times. I'm still eating noodles, certain snack foods, ground meats, soup, applesauce, etc. We had a dollar store blender for making my favorite go-to meal, protein smoothies. However, that blender couldn't hack it, it exploded and now we have a kick ass Ninja.
     Just like every other concession I've had to make because of fucking ALS, I fought it. You can only choke on sharp foods and breads so many times before you develop anxiety and fear of that experience. Michelle stood right by my side, easing this transition into place. She didn't freak out, she kept eating times as normal as possible and even when we eat totally different meals we have them together, or she'll have soup just so I can eat it too. She's my Superhero in all of this.
     With this diet transition comes bodily changes. I think what I'm eating is healthier than what I had previously stuffed down my gullet. However, with straws becoming harder to use, making my water consumption go down, I load up on fiber. My bowel movements have become more spaced out and I'm full of gas at all times. Too much information? I don't really care. It isn't an easy task for someone to go poop that has ALS. Someone has to disconnect my eye-gaze, drive me into the bathroom, pull down my pants and lift me onto the toilet, so that I'm comfortable I might add. Not every time I sit on the throne is successful, I don't always have results. Today wasn't a day I could waste hours on the potty. I had an email frenzy at hand to get the message out about our next fundraiser. This is where Macgyver Kris came out swinging. Bowel movements be damned, I was going to multi-task.

     This may seem like the silliest example of finding Grace in a day that I've blogged about in a long time, but it really meant a lot to me to not cave to ALS circumstances today. Even though my body got in the way, I was able to get a win today. Whenever I win, I'm showered in Grace. 

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.

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.