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

Thoughts from Michelle

As I see all of my Facebook friends posting pictures of weddings, engagements, and anniversaries. I realize just how special marriage is. After a year of planning for a beautiful wedding I learned quickly that marriage is work and love is a commitment between two people. Kris and I were married only 6 months when he was told he might have ALS (later confirmed.) Not only did I grow closer with my husband but my love for him grew stronger. I came to the realization that marriage is not about a fancy wedding, a house, or children. I learned it's about putting the other persons needs before your own. Everyday when I help Kris dress, bathe, or do daily activities I remember that marriage is about sacrificial love and that two people who marry each other should be willing to do anything for each other just as I will for him, and I know he would for me!

 My prayer is that all newly weds and newly engaged couples would share that selfless love with your spouses. Things don't always go as planned and the way YOU think your future should go. Stay firm in God's plan and the vows you said on your wedding day.  

Hero

       How many times has Batman saved the day? He's defeated some of the most ruthless bad guys movie goers have ever seen time and time again. As awesome as Batman is he can't come and save the day when my leg is locked up in bed and feels like someone has my knee in a vice at 3am. Batman can't come help me transfer to and from the couch when I want to be free of my wheelchair. Batman can't make sure a coffee cup is ready to go every morning at the Keurig, or that the lawn is mowed, groceries in the fridge, floors are vacuumed, oil is changed in the cars, the dog is fed and taken care of, the laundry is done. Batman can't help me get dressed and look awesome everyday. 

      Batman doesn't stand next to me at my weakest and make me feel as strong as Thor. Batman doesn't constantly motivate me to keep pushing, to keep fighting off the bullshit ALS deals us. Batman doesn't comfort me when I can't handle the pain this disease brings. Batman doesn't stay steadfast in faith to help build my preserverance and solidify my hope. Batman can't do any of these things, but Michelle can. Michelle is my hero. Michelle is who I look up to, who I strive to impress, who I idolize and respect. Michelle shows me such Grace that inspires me to be courageous, to be steadfast in Christ, and to keep fighting. 

She's the Best Thing. 

Cheers to Another Year

      Another school year has come to a close for Mr. Grahnke. That makes 6 but since I'm a Special Ed teacher it feels like 42 years (works like doggie years). This last year was out in Rockton, a place far different then my Hard Knock life in Berwyn. I didn't know what to expect when we made the move out to the Rockford area. We were leaving friends and my side of the family behind and walking away from jobs where people loved us. We were making this jump in the early diagnosis of ALS, where I was naive to just how much this was going to turn my world upside down. 

      My classroom at Whitman Post in Rockton consisted of students in 2nd-5th grade. Variety of disabilities, all different schedules and ability levels, the beginning of the year was madness. It was madness at home as well. Michelle and I were constantly trying to stay ahead of my ALS progression. It started with very minor adjustments here and there, to installing a ramp, shower chair, wheelchair shopping, to transfer boards. We even had to swap out our brand new Tempura-Pedic mattress, that wasn't even a year old, for the guest mattress to give me more support during transfer and while sleeping. At this point in my progression I need a bed that can raise up and down to give me more support. At the moment I'm giving Michelle quite the tricep workout every morning when I need help to sit up. This race against ALS still takes place every day. We work with teams of people to keep my quality of life at a B+ or higher. There are excellent days and then there are days where Michelle can't help me do a thing because I'm too busy crying my eyes out and cursing God for this place I'm in.

      At Whitman Post the 5th grade classrooms each wear a shirt with the Superman logo on it, only the S is replaced by a 5th on the shield. I feel like Superman when I come to WPES. I get to tear off the suit of burden I carry when I can't do things on my own I once could, and throw the pissed off feelings to the side so I can do what God intended me to do. Teach. It's been a rough year, but with the support from my WPES family I've been able to be a superhero again, I've been able to help the kids that need it the most, I've been able to bring home a good attitude to my amazing wife and I've been able to witness tremendous amounts of Grace. 

DUDE. be nice.                   Gronks