Wednesday, April 29, 2015

Your Hand in Mine

      We boast in the hope of the glory of God. Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope.
      Those are words from our Pastor's newest sermon series called, Seasons of Hope. Those are words I envision seeing in a college football locker room, heck every time I read the world perseverance I think of Friday Night Lights or Rudy and want to go kick some ass. But I'm getting off track. Confidence, anticipation, expectation, faith, castle in the sky, these are all synonyms for hope. We tend to think that hope is something we control. Something we can will into existence by holding our breath, crossing our fingers, or wearing our lucky socks. The cynics of the world think the results of hoping for something is just coincidence. 
      If you know me you know that I was always the guy who "had it under control." Oldest brother complex, where I made sure everyone else was good, had exactly what they needed, whether it was by running errands for them, or calling ex-boyfriends and threatening their lives if they didn't leave the lady alone, I would handle it. Keyword, I. Dealing with my dad having Alzheimer's while I was a teenager didn't help that complex. I thought I needed to right the ship and keep it together for the family. Hoping things would change wasn't working, I didn't think praying was working, I kept trying to fix everything. 
      Fast forward to present day. After I received my diagnosis of ALS, this, "I've got this," mentality continued. I had built up more of a faith in God and trusted in him, but I really believed I could still manage this on my own, I tried my best to make things go my way.  Then I took a stumble, then a fall in the bathroom, then on the ice in -15 degree weather. Every time I fell and bust my shit I would end up on my back looking up at the sky or the ceiling. While I lay there cursing, waiting for help, I was looking exactly where I needed to be focused, where I needed to secure my life, not in me, but in God. My suffering produced perseverance; perseverance, character; and character, hope. Hope that I know that where I walk, God will walk with me, His Hand in Mine, I can let go and persevere. 

Friday, April 24, 2015


      My career has been rejuvenated at WPES this year. That doesn't mean I disliked my job in D98, but as the teachers know who still work there, there are a lot of expectations that I doubt even Superman could live up to. We've got quite a few expectations out in Rockton these days as well. Growth assessments, PARCC state assessments, individualized student plans, district assessments, behavior intervention plans, incentive parties, Aimsweb, the list go on. Meanwhile we are all expected to put on a friendly face, act as if we aren't overwhelmed and "roll with it." 
      Scott makes it easy to roll with it. Scott is my principal. He always has your back. He won't kill you when you royally screw up, even when it makes him look bad. He'll listen when you have to just plain bitch because you don't think anyone else will understand the frustrations you have. He'll step in between you and a parent and take the weight off your shoulders. 
      I find Grace in knowing Scott. I was honest about my diagnosis of ALS with Scott before I was honest with some of my family members. He brought me in to a close knit community that I at first didn't feel worthy to be a part of. He let me park where I wanted, pimped out the restroom, spoke to board members about accessibility, the man had and still has my back. He helped me feel accepted when I felt like an outcast. Encouraged me when I felt low. He helps keep the normalcy that I greatly seek in all of this as I mentioned in my last post.
      I find Grace in knowing that I have him as a warrior in this battle.


Saturday, April 18, 2015


      The beauty of living so close to The Chi is that my friends can come spend the weekend with me on a whim. It's an escape for them and a relief for me. I spent Friday under the stars on the deck with Rosie, Wrigley, a 6er and a pizza. We reminisced on failed relationships from high school, drunken adventures in Forest Park and moments that made us who we are. Once it got too cold to bear we went inside and binge watched The Office just like we would have in high school. We polished off a bag of chips, the cold pizza and hit hay.
      My boy Kamm, and Emily came out in the afternoon on Saturday. We went up to the grocery store for some essentials, mainly some Shandy's, and then went back to the deck yet again. We jammed out to some tunes, knocked back a few, told some jokes, reminisced again. Then the Rockford Speedway took off in full form. Thanks to the southwest winds it sounded like the drag strip was in my backyard. This didn't slow us down. We headed for the front yard. In the front yard we picked up where we left off. Tunes back on, beers back on ice. This is when I started to joke that Emily should give my power chair a spin. I'm incredibly grateful that I have the insurance to cover such a great accommodation, but at the same time I can't lie, the thing scares me. It makes me think about the future when I might not be able to push myself in the manual chair. Emily cruised for a bit, but then Kamm asked for the reigns. Once he got behind the wheel all goofiness ensued. He was off-roading the thing, "threading the needle," drag racing passing cars, pushing it to the limit. He turned to me and said , "the boss should be behind the reigns." We switched rides. Mark to the manual, I to the motor, and tore up the driveway. I tore off up the street and stared up at the sky thanking God for the fun and support my friends gave me this weekend. All the while I wanted the evening to continue forever because I can't help but feel that my days are fleeting. I know this feeling gets me nowhere but it's hard to block out sometimes. The grass has wheel marks that will fade, my manual chair is dinged up from off-roading, my hands are dirty from gripping the tires. 
      The normalcy my friends, family, and Michelle show me is where I find Grace. ALS or not, the time I spent with Rosie, Kamm, Emily and Chelle can't be taken away from me. I'll let the picture do the talking for me. It's simple. I found God's Grace today. 

Tuesday, April 14, 2015

God Rocks My Socks

      I started this morning by pulling a shirt out from the back of the closet. I hadn't worn it all school year, but for some reason the shirt was calling to me. This shirt gave me a hard time. The buttons were like stringing a needle with a hair, every button was harder than the next. This could be because the shirt sucks, my theory, or it could be that I don't have the finger dexterity I used to. Either way, it was an annoying start. Then, I started putting my shoes on. All was well, no ninja moves needed to get the socks on, both shoes on, went to tie them but I forgot to put on my wheelchair brakes. The physics behind what I did are baffling, but I managed to launch myself head first into the closet, thankfully into Michelle's large collection of shoes to break my fall. I was a freaking mess dude, I'm face first in a pile of shoes, cursing like a sailor, when God intervenes, gives Michelle the super strength she needs to help lift me back up and into the wheelchair and off we go to school. 
      People ask me how can I keep my faith in God when he is letting such a shitty thing happen to me? I've got many thoughts on just how inaccurate this question is in itself, but I let them know that I'm not always on speaking terms with the guy upstairs. I've flipped him the bird and yelled things at him that if my Grandma heard me she'd hit me. But even after that, God fires love at me in such monumental ways that there's just no arguing that praising him even in hard times is the thing to do.
      Co-workers at WPES kicked off a GoFundMe page to help me reach a money goal that would help us buy a wheelchair accessible van that I could drive even in my wheelchair. These gifts will give me a chunk of my independence back that I lost and take a burden off of Michelle. The GoFundMe page hasn't even been up for a day and you guys have already blown away what I could have hoped for. God's love has poured over me through your kind words, hilarious jokes, memories that had slipped my mind until today, my face hurts because I've been smiling so much. The money being raised on this site is truly awesome, but the love that is being poured out, and me knowing that I have this ARMY of supporters behind me makes me freaking extatic and humbled all at the same time. 
      Better believe I will be giving the glory up to God this evening before I go to sleep. Pray about everything, worry about nothing. 

                                                                                                                         I love you guys,

Sunday, April 12, 2015

Opening Day

      Many of my fondest memories are linked to baseball. I came out of the womb and within minutes was in White Sox gear thanks to my dad. From a very young age I was taught to support the South side, the Bad Guys in Black, the Tough Chicago baseball team, the White Sox. Now before you go getting pissy about how I'm taking shots at the Cubs, or tell me how their young studs are really going to do something this year, save it, and talk to me in October. I'm willing to do a winning percentage beer case with any takers. I'm getting off track, I can still remember going to a Sox game with my dad where they played the Blue Jays. We drove up to the stadium, parked blocks away to dodge the parking lot fee and popped into an Irish dive bar just north of the park for hot dogs, chips and Pepsi to dodge paying a fortune for ball park food. The game was an all offensive show even with Jack McDowell on the mound. We had the lead, we lost the lead, it was a roller coaster for a young fan. It rained off and on, and I remember my dad laughing at the wusses who took shelter with every drop that fell from the sky. Then, late in the game, my hero at the time, Robin Ventura stepped to the plate with the bases loaded. It was my first game watching him play in person and I remember thinking I could "will" these guys into getting hits because I was there to see it happen. That will worked as Ventura crushed a grand slam that gave us the lead and ultimately the win. 
      I went off to college in the fall of 2005. As my fellow Sox fans know this was an exciting time on the South side. Led by Buehrle, Konerko, Dye, Scotty Pods and many other studs the Sox were going full steam into the playoffs with their eyes set on the World Series. Biotechnology, Psychology 101, my other freshman courses took a backseat for every playoff game. Even academic probation did not stop me from watching these games. Zach, Logas, Kamm and I would post up in my dorm room and watch every inning with sheer excitement for the following game as we inched closer and closer to World Series royalty. The White Sox ended up sweeping the Astros bringing the trophy back to the South side after 88 years. This championship meant the world to me, it meant the world to the Grahnke's, they won one just in time for my dad. 
      Baseball is a part of me. It's made me laugh, it's made me cry, it's made me jump for joy and lead a pack of wild and drunken fans screaming down dorm hallways. I know statistics of players that haven't played in a decade, names of players that played decades before I was even alive, there's no other sport, hell, interest that compares to the importance of baseball, the White Sox especially, to me. Going to games won't be the same these days. I used to hop on the Green Line with my dudes at a moments notice and head out to games. We would pool our funds and buy killer tickets as close to the field as possible. I'm not going to be able to do that anymore. The L isn't as convenient when you're in a wheelchair. I've talked about being at ass height with people before and the L sure as hell isn't a place you want to be at ass height. Sitting right behind home plate, or in left field by the bullpen won't happen either due to all the stairs and stadium seats. 
      Having a catch in the driveway won't be the same. I don't have the cannon for an arm that I used to, I can't make a running catch, run the bases or take cracks with the Louisville Slugger. Accommodations can be made, but it's not the same. These struggles suck, I hate them, they bring tears to my eyes just thinking about it. I find Grace in my buddies around me. Kamm, Danny, Kurt, Logas, Adam, the list go on, guys and gals that don't let my disease get in the way, that will get my ass into Sox games and into accessible seats, houses without ramps and bars at all costs. My army of family and friends are strong when I can't be, stealthily helping when I bullishly refuse it, and loving when I need a pick-me-up. The extravagant Grace I receive from the people I love make me full and in control and I am eternally grateful for that.

                                                                                                                   Go Sox!

Thursday, April 9, 2015


    Which experience sounds more enjoyable: Constant muscle twitching throughout your entire body or Charley Horse cramps every night when you are sleeping? What if I told you you could have both? Wouldn't you be so excited? I had and still do have these symptoms. The muscle twitching, or fasciculations as my Dr. refers to them, started in my legs. After I would go for a run or lift at the gym my legs would spazz out. They would twitch, pulse, even twerk. When I hit the hay in the evenings I would wake up in the middle of the night with extreme Charley Horses. So freaking painful. I remember punching myself in the leg trying to make them stop. The fasciculations were my motor neurons over firing and trying extra hard to send signals to my muscles that normally would get through without ever noticing. Mine were shutting down.
       We tried everything for the muscle cramping. Weird oils and lotions, banana after banana after banana, Gatorade before bed, drinking a cows worth of milk. As I said, the cramping happened mostly at night but sometimes happened in other places as well. My legs tensed up when I was driving once and I had to pull off the road onto someone's lawn. Once my right leg cramped while I was running on a treadmill and only thanks to my ninja skills did I avoid busting my shit and having a wicked face burn from the tread. Even with all of these problems I was too stubborn to go get checked out. I'd like to say I could feel that something more major was wrong and that's why I didn't want to go to the Dr., because then all this BS would be real, maybe I'm giving myself too much credit.
       Finding Grace in painful cramps and terrible twitching is hard to do. Where I can find Grace is that there are medications that relieve this pain and decrease the muscle fasciculations. I pop three of those bad boys per day to aliviate the cramping and decrease the twitching. So if I ever shake your hand and my arm twitches you'll know why now. That is of course if I haven't had a venti triple espresso from Starbucks for breakfast. 

"The Lord will rescue me from every evil attack and will bring me safely to his heavenly kingdom. To him be glory for ever and ever." 2 Timothy 4:18


Monday, April 6, 2015

Gronks, 1, Socks, 0

      Today was laundry day, meaning all my Puma socks were in the hamper and the only socks I had left were the long black ones. This would be no big deal if my toes moved like everyone else's, if my ankles moved up and down when I told them to, but they don't. My feet move like a limp chew toy Wrigley tosses about in the living room. 
      So there I am, staring down those stupid socks like Ahab taking on Moby Dick, Seinfeld vs Newman, The Roadrunner vs The Coyote, or Ron Burgandy vs Wes Mantooth. Without any hesitation I grab the left one and wrangle it over my left toes, I start with my left foot because it still follows my commands more often and twist that thing over my heel making sure the heel pad goes where it's supposed to even though now it's on top of my foot. After some big deep breaths, relaxing thoughts, I grab the right sock, sling my right leg up on my lap and begin the fight. My foot is sweaty for some reason this morning making things a bit more difficult. Again, my toes don't move and my ankle doesn't move when I want them to. I challenge you to put a sock on when neither of these body parts cooperates. Back to the fight. I grunt, I curse a little bit as I yank that sock over my sweaty toes, the elastic isn't doing what it's supposed to as I reach my heel, my big toe is stuck so I've got to double back and untangle it. One more big breath out, and it's up. It was a stressful 4 minutes. 4 minutes isn't a long time to eat a sandwich, play Trivia Crack, but it is when you're putting on socks. 
      I definitely don't enjoy how much longer it takes everyday to get ready for work, but I remind myself that I am still able to get ready on my own and I am still able to go to a kick ass job everyday. I find Grace in being able to wear all my badass shoes again that I wasn't able to wear when I was "walking." Now in the wheelchair I can break out my Adidas, my Sperry's, my canvas kicks. Small victories, man, small victories. 

      Writing this blog means a lot to me and I thank you guys for all your kind and uplifting words. I'm glad you enjoy reading my writing. Stay tuned.


Friday, April 3, 2015

Hartnäckige Mann

      Have you ever slipped on a patch of ice and gone tumbling to the ground? You're immediately embarrassed, whether you are by yourself or with people. You quickly establish your balance, maybe laugh it off, even though your ass hurts like a mother, and you pick yourself back up. I experienced this feeling on a regular basis, only it wasn't ice that took me out, it was my own two feet. I fell in the kitchen, the grocery store, the parking lot, the park, at church, at work, the list goes on. Only when I fell I couldn't pop back up. 
      Hartnäckige Mann translates to "Stubborn Man," at least that's what Google says, my brother might dispute that. Anyways, anyone that knows me well or knows a Gotsch or Grahnke knows that we are a stubborn people. Friends joke that it's our German heritage that makes us stubborn, and it probably plays some role in it. My stubborn nature and oldest sibling psyche makes me a very determined person, many times to a fault. My nature is to help others in whatever way I can, make sure they're taken care of and then get my feelings and needs in check. 
      I fell when no one was around, I fell in front of strangers, I fell in front of friends. Every time I did I felt embarrassed. I would wave off help and try and muster up enough strength to push myself up. "I'm fine, I'm good, don't worry about me." The reality of the situation was I didn't have it under control, no matter how stubborn I was, no matter how much strength I had in my arms, I couldn't get it done. Sometimes I managed to get up on my own, other times I didn't. God was breaking through to me, when I would shout up at him, cursing at him, "help me the f*** out I would say in my head, sometimes out loud, he was answering my prayers by gracing me with help from others. The ever so wise Alfred from Batman said, "Why do we fall Master Bruce? It's so we learn how to pick ourselves back up." Or in my case it's so that I learn to trust in others and know that accepting help isn't a sign of weakness but wisdom.

      I find Grace in Michelle. Michelle has been here through all of this. When the doctors gave the diagnosis, when we were tricking out the house to make it more accessible, doing all of the laundry because the machines are in the basement. She's been there when I'm acting like a bull in a china shop, cursing out the Keurig when it doesn't function right and yelling at the cubburds when I can't reach something. Other young adults with ALS don't have this luxury. They don't have someone who loves them unconditionally. Someone who will provide subtle help so that my stubborn pride doesn't feel broken down. Someone to bring laughter to shitty situations. Is it a coincidence that Michelle's middle name is Grace? I don't think so.

      I hope everyone has a wonderful weekend celebrating the sacrifice Jesus made for us so that we could have the lives that we treasure so deeply. 
                                                                                                                 Love you guys,

Thursday, April 2, 2015

April of Last Year

      I'm on spring break at the moment with lots of time and coffee on my hands. Rather then binge watch episodes of The Office that I've already seen or watch repeat episodes of 19 Kids and Counting with Chelle I thought I should turn to writing.
      A whole hell of a lot has changed in my life in the last year. I changed jobs, moving on from my awesome Prairie Oak family where I came into my own as a teacher and made lifelong friends, to WPES where I have become family in such a short period of time that it feels like I've known these people for years. My love for teaching and advocating for kids with special needs has never been more charged. We moved from Elmhurst out to Roscoe for a few months where we rented an apartment from a bat shit crazy landlord as we scanned the area for a real place we could call home. After seeing 40+ properties with our realtor and nonsensical arguments with that landlord we found a house we could call home. I'm now proud to say I'm finally my own landlord and have a place of my own that Michelle, Wrigley and I can grow into and enjoy.
      April, 2014 shit hits the fan in terms of my health. At this point I'm starting to walk with a limp, running ain't happening, I had excruciating leg cramps at night that couldn't be cured with milk, water, Gatorade, or even mustard. I challenge you to eat a tablespoon of mustard without puking. So I go to see my first specialist. I had a bad vibe from this dude from the get go. His office smelled of old toothpaste, it was dark and dingy, bad vibes all around. He assessed my leg strength and within 20 minutes without any solace he dropped the bomb, "You have ALS sir." Remember the movie Saving a Private Ryan? The scene where Tom Hanks is taking cover on the beach of Normandy and everything goes into slow motion and the ear piercing buzz is rattling his brain, that's how I felt. Michelle and the Dr. kept talking but I heard nothing. Nothing until he asked, "do you have life insurance?" In my mind I was jumping across the Dr.'s desk and beating the crap out of this guy. I was mad at him, I couldn't believe he could say something like this to me, I blamed him. We left the office with information about tests we would need to do to try and confirm or disprove this diagnosis. We went back to our apartment where I drank right through a case of Sam Adams with a few close friends not knowing what to do or say so I just got hammered.
      A few days later I'm sitting in a hospital getting tased by a student doctor with an EMG (Electromyograph) test. This test assesses the health of your muscles and nerves but this dude is literally tasing me in different parts of my body. This test is usually just done in the hands to assess if you have carpal tunnel syndrome. The student doctor had no idea what he was doing and kept raising the shock power and hitting me with voltage in the neck, knees, elbows, etc. Those of you that know me, know that I use colorful language at times and I fired off some choice words at this rookie before he finally got his boss and he did it right. The CT scans followed. As did the X-Rays, cortisol tests, MRI's, bone scans, and enough blood was drawn to provide blood transfusions for all the kiddos in 19 Kids and Counting. I had to do a piss test where I carried around a brown jug to pee in and keep on ice for 48 hours. That one was probably my favorite. "Hey man, what's in the jug?" Have fun explaining that to people. Mind you I didn't do all of these tests only once, I did them two or three times between two different hospitals to get the second opinion on what was going on with me. Prior to this I had never set foot in a real hospital, I'd go to the Dr. every year or so, get a basic checkup, turn and cough (dudes you know what I'm talking about). This flat out sucked. The uncertainty of what was wrong with me wore Michelle and I out. We spent way too much time hitting the refresh button on our Loyola healthcare app waiting on test results, praying something would come back conclusive that said it wasn't ALS. It didn't. The final test I did at Loyola was the muscle and nerve biopsy. I had to be put under anesthesia, which I had never done before, and then have a small piece of muscle and nerve removed from my leg to see if what was going on with me was degenerative or causation by something internal. I woke up, had a wicked scar on my leg that looked like a shark bit my calf, and the waiting on results began again.
       Smash cut to this morning. I'm not sitting in uncertainty, wondering, praying, begging, that I don't have ALS. I have an answer. It's not the answer I wanted but that's how life goes. We can make plans for our lives, we can pretend that we have control over what happens to us, but we don't. God is in control. God has answered my prayers. The haters out there will ask how I can keep faith when a God dealt me such a shitty hand. I've had those screaming sessions where I yell at God, used explicits that would fit right into a Tarantino movie. But God has also blessed me in so many ways that even with this diagnosis I have such an incredible life. I've found Grace in playing with my nephews. I've found Grace supporting my students with disabilities that have boulders stacked against them. I've found Grace in the bonds that I've made with my fellow teachers. I've found Grace in my wheelchair that allows me to make my own coffee, let the dog out, cruise the school hallways, go to the grocery store with Michelle. Just be me again. 

                                                                                                                      Love you guys,

Wednesday, April 1, 2015

Friday Night

      This week was a barn burner. The paperwork seemed like it would never end, my students were an extra kind of lazy, both brake lights went out on the car and the dog chewed up not one, not two, but three shoes. It's Friday though. That means we can go out and have some beers and just unwind. First things first, I've got to run through the checklist. What checklist you may ask? The checklist I've got to run through when I go anywhere to make sure the place is accessible. I'll back track to fill some of you in who may not have seen me in a while.
      Over a year ago I started noticing that I was tripping over my right foot when I was running and my ability to do squats at the gym vanished. I went in to see my doctor and he didn't have any answers, so I was off to the specialists. I was poked, prodded, pinched, scanned, flipped, medicated, and escorted to every wing of two different hospitals and two different sets of specialists all to land on the diagnosis of ALS. "Do you have life insurance?" "Do you have a living will?" "How many stairs are in your apartment?" "How are you feeling about all of this?" How do I feel about this? How do you think I feel about this diagnosis? I'm fucking pissed, I'm terrified, I'm confused, I'm only 27, isn't this an old person's disease?!? The answer to that is no. And this isn't some freak case that is only happening to me. There is a community of young people out there that are fighting the exact same battle that I'm fighting. The things we all take for granted and loved to do have now become much more difficult or impossible. Hiking is out. Taking a jog is out. Basketball is out. Climbing stairs to your buddy's apartment is out. Hell, driving is out, or at least much more complicated. This community of young people with ALS and our families lives have been turned upside down and though we may have a terminal illness, we have no timetable of how long we'll be able to continue to embrace the things we love. Could be 3 years, could be 40 years, but we will carry the burden of knowing that we have an expiration date that we all know is coming but that we face and experience a little bit every day. We can't put it out of our minds.
      Back to the checklist. Does the bar have low or tall tables? I don't want to sit in my wheelchair and look at people's assess all night, no matter how nice they may be. Is the front door at ground level, or do I have to come in some back door? How's the parking situation? Will I have a long way to wheel? Will my chair fit in the restroom when I have to take a piss? This checklist I have to run through on a daily basis probably never crosses my friend's minds. They can pick up and go, wherever and whenever they want and man, do I miss that. But this blog will not be used to complain, push depressing thoughts on my readers, this blog will be a vehicle to advocate for others with ALS and myself. This blog is a place where I can share the Graceful moments I experience on a daily basis and the great relationships I have with so many of you that motivate me to give this life all I've got.

Thanks for reading. More updates to come.