Inspiration

      The 2015-2016 school year has officially started. It's the start of my 7th year of teaching special education and this morning has been the first time in two weeks that I've been able to hit pause and reflect. I caught up on Internet articles I saved, and cranked up the tunes in my Beats headphones. Specifically Hillsong United because they help slow down time. They're like a Swedish massage for the brain. I'm getting off track. The start of this school year has been different than any other I've had in my career. I may have been diagnosed with ALS last summer but I hadn't accepted it yet. This school year started and there was no denying that I have ALS. In my mind I struggled with the idea that maybe I'm biting off more than I can chew? What if my arms officially crap out on me like my legs did? What if my voice goes? My ability to swallow? After all I'm living with a terminal disease, am I going to be reliable enough to support these kids?

      I read an interview that was recently posted with Tim Shaw. Tim is a former NFL player, he's 31 years old and he has ALS. Tim is an inspiration for me. He openly talks about his faith and is truly living even though he's dying. In the interview Tim said, "I believe God makes us for a purpose. Sometimes God specifically says, This is what I made you for." Tim goes on to say that he knows God didn't plan for him to have ALS, but he prepared him for the tough road ahead. Tim spends his days using his famous reputation to help the needy in Brazil, coach football and traveling the world spreading God's love and fighting for others with ALS.

      God's purpose for me showed brightly yesterday afternoon. Any doubt I had about whether or not I should be in the classroom with ALS was blown out of the water when the Gronk's Grace squad united for the biggest Ice Bucket Challenge in IL history. 480+ kids and some 25 teachers soaked themselves to support the ALS community and to rally behind me. Sometimes God shows his Grace softly and cryptically and other times his Grace kicks you in the face. This time around it was a kick in the face. With the tremendous love and support I received from my Whitman Post family I don't have time to dwell on the What If's? I will fight like hell to keep advocating for those in need and use this inspiration to share God's love and grace. My purpose is clear. 

#SeptemberIsTheNewAugust

Here's a link to the epic #ALSIceBucketChallenge from WPES:(ignore the name butchering)

http://www.mystateline.com/news/ice-bucket-challenge-hits-whitman-post-elementary

http://www.wifr.com/home/headlines/Rockton-Elementary-School-Raises-Money-for-ALS-Research-323279441.html?device=phone&c=y

Splash!

      I would hope that you've all seen an Ice Bucket Challenge by now with the 2015 campaign kicking off on August 1st. Many of you watched me dump ice over my head and then reach for a Guinness. The torch has already been passed to some of you. I know that the IBC may feel monotonous, worn out, a trend. Some may even feel like it's a money grab after you've already been incredibly gracious and have donated to one of the many ALS organizations or the Go Fund Me Account that was created for my family. I wanted to hit pause amongst all the social media noise about the Ice Bucket Challenge and explain why it's so important to me.

      I woke up this morning not because my alarm woke me up but because my left ankle was completely numb and needed to move to regain some circulation. I however can't move my leg on my own and would usually wake Michelle to do it for me but many mornings I don't wake her because she looks so pretty and has earned her rest, so I just lay there disgruntled and read the news on my phone. I can't get out of bed without her help. I can't get off my wheelchair and onto the toilet without her. There are days where I can't even wipe my own ass without her assistance. This morning I'm craving eggs and bacon for breakfast but I can't crack and stir the eggs. I can't grill the bacon because I've burned myself numerous times trying. My days of cooking are behind me (hobby #46 I can no longer do). I settle for a Clif Bar but those are in the cabinet so I have to get my portable arm reacher and awkwardly open the cabinet, knock over the Wheat Thins and graciously drop the bar into my lap. 

      Wrigley, my 8 month old pup is begging to play tug of war. He lays his toy in my lap prompting me to grab on and give a good tug. He might as well have been asking a 106 lady to do the same as I barely entertain him for 7 seconds. It's an iced coffee morning so I struggle mightily to get the ice from the fridge before I give up so that I don't fall out of my wheelchair. Yet another can't. 

      Off to church we go in the wheelchair accessible van that I can't drive but pull right into the shotgun spot and get my fix of sunflower seeds for the morning. I have to use my left hand to fill my mouth because when I use my weaker arm I get seeds everywhere. Once at church we post up in the back row, where the handicap accessible seating is, behind everyone and hope that if anyone sits in front of us they're the shorties of the congregation.

      I could continue on about the many things I struggle with on a daily basis that I had always taken for granted. Maybe I'll share in the next blog. As it goes, this is why the Ice Bucket Challenge is so important to me. My doctors and researchers we've spoken to have no answers for Michelle and I. There isn't a lot of hope out there besides staying steadfast in my faith. But with the sharing and fun there is to be had with the IBC we are building a larger and larger community support system for those who are afflicted with this terrible disease. Our Hope Tank fills when we see our friends, family and celebrities spread awareness to possibly someone who hasn't heard of ALS and that person may help provide the means to finding a cure. It might not get done in time to save me, but I'm confident the Ice Bucket Challenge will save ALS patients in the near future. 

I can find Grace in that. 

White Sox Class

      Cue the theme song from Chariots of Fire. Now that you've got that epic song in your minds you'll hear what I heard in my head last weekend when I went to Sox Park for a game with my buddies and a "surprise." Upon arrival, after VIP parking, Kamm, Brendan, Tim and I were brought into the stadium by our own PR escorts. They miked me up, where Kamm said, "you do know he's going to swear a lot," he was right, but they said they have good editors. 

      We waited a few minutes, giddy of what was to come. Jerry Reinsdorf strolled by, Harold Baines in his coaching gear, many player's wives, and then they escorted us out by the World Series monument. A few short moments later, cue the music, the 2005 World Series team walks out to join us by the monument. Brief back story, this is the team that almost cost Kamm and I a college degree. Back in the fall of '05 we boycotted class, homework, even tests when the Sox had a playoff game. One of the best decisions I ever made. The team took a dozen photos with the trophy before the WS MVP Jermaine Dye locks eyes on me. My face already hurts from smiling so much when he walks over, gets down on one knee and shakes my hand. He told me, "we've all heard you're our biggest fan, but we want you to know we think you're a hero," cue the music, when he hands me an '05 WS customized jersey with GRAHNKE across the back and insists I join the rest of the team and trophy for a picture. 

     Hundreds of pictures are being snapped, I told the guys I was worried I was going to swear, when Ozzie Guillen grabs my shoulders and says, "swearing, who the fuck cares?!? Fuckiodnbrbvv," that's how I would decipher what Ozzie said. The players dispersed but Jermaine held back and put the trophy on my chair and snapped a few more pictures. He then called over Frank Thomas. Frank is truly The Big Hurt, the man is massive but such a sweet guy. He and Jermaine grabbed a shoulder and we snapped a photo. That's when they turned the trophy over to my crew. They wanted me to hold the trophy but I was terrified my weakening arms would drop the WS trophy! I gave that honor to Kamm and then we took one of the happiest photos my wife said she thinks she's ever seen.

      On to Act 2. Our lovely PR team took us to the field through the clubhouse halls. Out on the field we listened to Rowand, Anderson, Blum and Ozzie speak to season ticket holders about '05. While they spoke we met the current White Sox RF Garcia. Another large dude, took a picture, got an autograph. Then, out of the dugout comes my dude Robin Ventura. We walk over to him where he shoots the shit with us. I told him of one of my most memorable games where he hit 2 home runs to win the game. Kamm complements his glasses. He told some jokes. Another awesome picture, another autograph, another manly and classy handshake. Cue the Sox players that just wrapped their interview. They come bear hug us and pull us in for more pictures. Ozzie talks fast and we lost track of his meaning, but who cares, the dude is so cool. Aaron Rowand gives me a little man shoulder massage, Brian Anderson complements my sunglasses.

      Act 3. We join Cate, Rosie, Logas, Halter, Joe and Paul in our suite to enjoy hot dogs and beers and take in the WS ceremony where we get another view of our '05 heroes. The videos on the jumbotron gave me chills. We relived every moment of the playoffs as the crowd roared. Kamm, Logas and I recall when the Sox won in '05 and I lead a screaming parade up and down the dorm halls. The day could have ended there and gone down in history as the best day ever right behind my wedding day, but it wasn't finished. 

      It's the top of the 4th inning, Sox are down when there is a knock at the door. In comes Jon Garland and Brian Anderson, as well as a camera crew. These two studs are here to hang out and have beers with us. Brian and Jon fold into our crew as if they've always known us. Jon and I talked about his daughter. Brian and I talk about hot dogs vs polish sausage. All the while they let me wear their WS rings on each hand. Eventually they had to split but not before taking some selfies with the crew and giving me a hug. We continued to party and enjoy the Sox all the way into the 13th inning.

      Now I know this experience would never have happened if I didn't have ALS. Jeff wouldn't have been able to tell the Sox much of a story if it weren't for this disease. As great as this day was, I'd trade it in a second if it meant I'd be healed. But right now the fact is I have ALS and it brought me one of the most epic days of all time. I'll be able to share this experience with my dad in heaven one day. My crew will remember this day for the rest of their lives. There's Grace in that. Cue the music.

http://m.mlb.com/cws/video/topic/8878818/v309045183/soxstories-2005-reunion-kris-grahnke/?c_id=cws

Winning

      There was a lot of drama attached to last night's Espy Awards and to be honest I didn't watch any of it. What I did watch was Stuart Scott's speech from last year's award show when he strongly and proudly discussed his mortality that he was soon to encounter due to his cancer. "When you die that doesn't mean you lost to cancer. You beat cancer by how you live, why you live and the manner in which you live." He delivered this quote with such poise that I remember yelling out, "hell yeah," and startling Michelle. I've been trying to live my life by this motto ever since I heard Stuart say it. I too am in a place where I have to face my mortality. ALS is terminal. Terminal doesn't mean I will stop swinging punches, even if my hands have trouble making fists. Terminal doesn't mean I will stop hugging and squeezing my nephews, even when my biceps are getting weaker. Terminal doesn't mean I will stop having fun. I won't give up on the White Sox. I won't stop drinking beer. I won't stop teaching. I won't stop being sarcastic and silly with people. I won't quit.

      I'm not going to lose to ALS, I've already won. I know Jesus died on the cross to save me from my sins which means I've already got my ticket punched for the greatest destination imaginable. Thus, I'm going to keep living my life in a manner that's worth fighting for, love those around me that give me strength, and praise God for the blessings he showers me with. 

      I encourage all of you to live this way too, regardless of what obstacles or disease you might be facing. Embrace the life you have and those around you, because we're winning.

Time

      People handle their time in different ways. The type A's of the world make sure their to-do lists are filled and there is always a plan. The procrastinators of the world always delay, delay, delay. I find that I fall somewhere in the middle. In grad school I would always put off work until the last second and then cram and that worked out well for me. When the weekend rolls around though I want plans, I don't want a moment of freedom to go to waste.

      Now that I know that I have ALS I see time in a whole new way. As I've said before in blog posts, life is finite. When we say, "how am I going to spend my time?" We need to remember that we really have no idea how much time we have, nor is it "ours." It's on loan from God to us and we're to make it as meaningful as possible in the amount we are allotted. 

      It's summer vacation, perks of being a teacher, and having all this time has been both a blessing and a curse. I've already had some impeccable times with friends and family, and been on adventures with more to come in the upcoming weeks. But I've also spent a lot of time dwelling on my diagnosis and pitying myself. I was living by the stupid YOLO lifestyle and indulging too much to try and block out the hand I was dealt. I strayed away from the safe and loving path where God, my friends and my family are to help make "my time" special and worthwhile. 

      Today I found grace when I spoke with 80 kids about the reality of this disease and how it impacts not only me but thousands of others. They welcomed me with open arms and are dedicated to raising money for ALS. They showed compassion, grace and humor. Time well spent. Grace refilled.

Fight

      Which one do you want to hear about first? The fight in middle school where I threw a kid into a locker for saying something stupid about my little sister? The one at the track meet where a guy in my relay team was being bullied incessantly and I couldn't take it anymore so I threw a haymaker at a guy 2x my size and ended up getting a busted up jaw? Or the many punches I threw in college when people got out of line around the people I called family? Some of those I won't get into details about because I don't know what the statute of limitations are. I'm not new to fights. 

      I was lucky enough to get some years in with my dad before things got hazy for him. He was able to pass along advice to me, advice that I still wear with honor today. Sometimes fighting is necessary. Don't fight for sport, or because you disagree, but when you're backed into a corner or the people you love are being hurt, fight.

      I'm fighting day in and day out for my life here. Anyone reading this knows the hardships I face on a daily basis. That's life now and I've accepted that. What I haven't accepted is the lack of support we get on a state and federal level. We patients with ALS (pals) get fed sappy story bullshit without enough follow through. People who can do something to improve our lives or even save them don't, and need to get their asses in gear. I also don't accept the "handicap accessible" culture we currently live in. I frequently deal with the hassle of community locations still having stairs, or faulty ramps, tiny hallways or dickheads using the wheelchair stalls when others are available. I've reached my tipping point, I feel backed into the corner, and I have an army that I know will stand and fight with me. I ask that you fight back for  me and for others that can't fight. Call and email state and federal reps and demand better services for pals. If that's intimidating at least fight back when you go to a business, restaurant or bar if the location is inaccessible, or looks like a place I'd struggle in, speak up to the person in charge. Fight, fight, fight. I'll have your back.

Finite

      We Midwesterners persevere through some terrible winters. Everything around us freezes. Our cars struggle to start, we bruise our butts falling on black ice, it's terrible. But then the spring comes. Our lawns begin to grow, flowers blossom, the trees get green again. I've been spending a lot of time on my deck lately. Michelle and I loved this deck in January and boy has it been a good investment come June. 

       With the terminal illness that I wake up to every morning I get pissed some days. Ask Michelle, many days the first word out of my mouth rhymes with truck. At the time I am so mad. Mad that I can't get out of bed by myself, mad I can't reach the cereal in the cabinet, mad I can't hop in the car and escape reality. When I'm smart I reach for my headphones and plug into music. Van Morrison, John Hiatt, Kid Cudi, Hillsong United and others help me stabilize and cope. Haters out there will tell me that I should bail on my faith right now with the cards I've been dealt. I may know I have a terminal illness but plenty of people are walking around without a clue of when their card will be pulled. I know mine will be pulled, but I don't know when. In a weird way with this knowledge I can see into the future. It's not a future where I can get amped about winning millions of dollars or make premptive investments, but I can see the importance of slowing life down and appreciating the little things. The smell of freshly cut grass, the cardinal that frequents my bird feeder, Wrigley's lovin', the cold beer in my hand, the sun setting in the west. I may not be able to predict the cards, and I may not like the hand, but the hand comes with so much to be thankful for. 

      Even when my strength is lost I'll praise you, I will always sing your praise, even when it makes no sense I'll sing your praise. 

http://youtu.be/3Sv_876eqxg