Wakefulness Slumber

      I was cruising the streets of Oak Park in my '92 Oldsmobile Achieva on a bright blue fall day. Every tree was a different shade of orange, yellow and red, mixing well and smelling of soil. Cate and Rosie took over stereo duties and cranked some David Banner. The bass rattled as we cruised East Ave on our way to DiNico's Pizza. I was feeling 17 again, and then I felt a fire burning in my left foot, then it shot to my knee, my hip, DiNico's left my mind, Cate and Rosie vanished and I awoke with a silent, "son of a bitch," in my head. 

      This is an every night experience. I take solis in my dreams where I get to run, drive, climb, and dance, things I no longer get to do because of ALS. I escape this bullshit and enjoy the world in ways most people take for granted. These dreams however get cut short all too often with a leg cramp or growing pain. Imagine getting a Charlie horse but not being able to move to release the pain. I try with all my might to adjust my legs on my own without waking Chelle. She does so much for me during the day I want her to be able to sleep peacefully. I spend many hours awake, in pain, trying to think happy thoughts to make the pain subside. Shenanigans with friends, French fries, beer, boobs, running, Christmas, all go-to happy thoughts, and then I pray. I pray that one day this disease will leave me, and then my angel Chelle swoops in and rescues me, pulling me onto my side to eliminate the pain, once again embracing the Grace around me.

Beauty

      In a recent sermon our pastor was discussing what heaven will look like based on what the Bible tells us. He spoke to how we use the word beautiful to describe things and people we find aesthetically pleasing. Before the concept of aesthetics even existed the Greeks came up with the word beauty or kalos, to explain God's greatness in early translations of the Bible. So if you think about it we definitely over use the word beautiful to describe things we find nice to look at it. 

      Living with a terminal illness like ALS is a mind fuck. I drive around day to day in my wheelchair focusing in on small details in the world around me that I never used to even notice and questioning why and how they came to be. When I dwell on that thinking and why I'm focusing in on such "meaningless" things I know that it's because I'm trying to avoid thinking about my immortality and End Day. Those thoughts consume you and makes it almost impossible to be happy, even with the faith I have in God.

     ALS brings darkness and dispare if you don't consciously make the choice to invite beauty into your life. You need to focus on the details. For me, I'm blessed because I have Michelle in my life. Her hair down to her toes are stunning and her beauty alone makes me see past my diagnosis. Her smile picks me up when I'm stressed, her laughter and silliness relaxes my nerves, her kisses give me strength. We watched the lunar eclipse together Sunday evening and were taken aback by the power and beauty the moon displayed. I noticed every swirl in the clouds, beams shining from the moon and warmth from Michelle's fingers intertwined with mine, and for the evening I forgot that I had ALS and was consumed by God's beauty. That's Grace.

20,000 Thank You's

      I woke up Monday feeling like the Sahara Desert was in my throat and a waterfall of snot was dripping from my right nostril. The miserable cold that all the students have had latched onto me and wouldn't let me go. Sneezing isn't the same with ALS. I can't bring both my hands to my face to hold a Kleenex the same and blow a massive blow to dry up the waterfall which makes things even worse. Smash-cut to the end of the day. Brendan and I had just pulled into my driveway and I was driving down the ramp as I always do when, SKEHFIBRCH, crash, my entire wheelchair is on its side, my head is on the concrete and I've got 300lbs on top of me. Brendan with Hulk strength and Flash speed was able to pull me from the wreckage and flip my chair back upright. I sat there in my driveway, bleeding from my eyebrow thinking, "what the fuck just happened?!?"

      Brendan, my hero, was able to get me back in the chair and cleaned up, where we discussed how the heck a backpack strap could cause so much trouble, before he went home. My day started horribly and ended like a train wreck. But then, however, my spirits were lifted. I had and have been checking on the Gronk's Grace Team page religiously as the Walk approaches. And I saw names on my team that I couldn't believe were there. Friends I haven't seen since Boy Scouts, elementary school friends, ex-girlfriends, distant family members, all signing up and donating exuberant amounts of money for me. I took out a fork to eat my humble pie.

      The GoFundMe support was tremendous and I thank God I have those funds to tap into whenever I need it, but the Walk money feels different. Being a part of this Team makes me proud. So many people kicked so much ass to raise this money. Kids did community service and smashed their piggy banks for these donations. Friends from all across the country even on different continents helped spread awareness for ALS and  got their peers to donate. 500+ people did the ALS Ice Bucket Challenge. I opened up about my insecurities to total strangers on TV, at bars, the grocery store, to anyone that would listen. Gronk's Grace has spread like wildfire and the support we've all raised will help many in the community with ALS. I've called us a team, squad, gang, clique, but I think at this point we should be called an army. An army that I know won't quit and won't back down or retreat until a CURE is found. I've never felt so proud to be a part of something. To victory!

A Poetic Snapshot of ALS

This comes from a guest contributor, my younger brother Kurt.

To Kris,

 

To dedicate an ice bucket challenge

Is to attribute so much more than 

A quiver in the spine.

It is so much more than a feeling,

A transitory sensation.

To dedicate anything to you

Is deeper than that.

It is more like being a root 

Among many beneath the earth

And you are the tree, an organism

With the purest cause.

 

Now like a tree

You really are an organism

With bone, nerves and blood

Like the wood, limbs and trunk,

You are all those folded proteins

And chemical signals too.

You are the cells that wither within you

And you are the synapses that strengthen your thoughts.

You are this cascading system of physicality,

But you are also grace and courage unfiltered,

Which to me makes you an angel

If they exist – And why ask?

You are here.

 

But with sickness like this, I struggle and cringe.

It would make me sulk and draw within

Were you not there to hold those doors open.

So instead I ask: what is with the genes,

Which from the earth produce growth

But so to enact the degeneration

Down the generational line.

Did I luck out or am I only keeping

My doom at bay?

But as I pretend to sit idle

In a canoe as the orange water waves

Sway me,

My soul,

Set free.

I am comfortable

To know and know not,

Because you are and will always be

Here.

 

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