Southpaw

      Whether it was launching a baseball from the warning track to the catcher, pinpointing a frisbee 75 yards to the end zone, or landing a fierce jab to the gut of a foe, I've always relied on my right arm. Even when it came to the easy stuff like brushing my teeth, holding my phone, lifting a pint of beer, my right arm always won out. 

      Now a days this is no longer the case. When ALS threw the kitchen sink at me it collided with the right side of my body. Tripping over my right foot is where this fight started and now it's turned me into a southpaw. Put a 50 lbs oven mit on your right hand and try to write an email or pick up the remote. That's what it feels like in my fingers and arm. My brain tells my arm to move but it stays basically motionless unless I whip out a killer shoulder shrug or move it with my left arm. 

      A fellow ALS fighter just wrote a blog where she shot down the idea that giving up independence might as well be a death sentence. I've struggled mightily at every point that I've had to concede and give up independence. Rocky had Mickey in his corner. I've got God in my corner as I'm training to become a southpaw (look it up). God does not promise ease; however, He does promise to never leave you or forsake you. It is this chapter of my life that has changed me. I've got a new fighting style. With new eyes and a new fist, I see the things that matter. I see and feel the Grace. This fight isn't even close to over.

Ground Control to Major Tom

      Today is another transition in my life. A dude from LiftSystems is coming to install a ceiling track to help me in and out of bed every night, which will improve Chelle's quality of life quite a bit now that she won't need to lift my heavy ass. The thought of playing the Crane Game every night with my body has got me feeling strange if not introspective.

      It took me a long time to open up about my ALS and really communicate all my feelings, worries and anger that go along with it. Prior to opening up in these blogs and being true with my friends and family, ALS was tearing me apart on the inside. I was always a guy who kept my thoughts and feelings close to the vest, unless I had four beers or so, then my emotions would explode and usually make someone and/or me cry. 

      Knowing that one day this bullshiit disease may come after me and possibly my voice is all the more reason for me to be as clear, effective and purposeful with my communication. I don't have time to lie, to put on a front, or to internalize my feelings. I do however have time to tell you all how much I love you, how much I depend on the people in my bubble that make life as "normal" as possible for me. I do still have time to teach kids how to read and decode and how to add and subtract fractions. I do have time to answer questions about ALS, no matter how personal, to advocate for people like me. So keep the questions coming. I will speak "baby talk" to Arik Kristoffer when he is born in the coming days and blow raspberries on Abram and Allen's head. I will shoot you a glance in a meeting that says it all. I will toast your successes and 

comfort you in times of sadness. I will speak God's Grace. 

Food

      Taco pie, chili, meatloaf, breakfast muffins, pot roast, lime chicken, quiche, chocolate crescents, pulled pork, cheesy potatoes, pork tenderloin, and lasagna. Mouth watering yet? Family and friends have stepped in over the last month to cook for us and take a portion off of Michelle's plate every evening. These meals have allowed Chelle and I time to enjoy one another over dinner and to relax with one another after long days of teaching instead of her worring about cooking.

      These days I have had trouble feeding myself if the meal isn't a finger food or is messy. I bring simple meals to work and have had to pass on some tasty treats when I'm not around people I feel comfortable asking to feed me. Eating may be my favorite activity, especially when it's paired with beer drinking. We went out for Mexican the other night and Chelle was an excellent chips and salsa assistant. Even when there are people who may not understand why my wife is feeding me and stare throughout my meal, I continue to smile and laugh. Their glances don't change the taste of my Modelo.

      Yesterday we made the trek to Oak Park to have Thanksgiving Dinner at my mom's house. She always goes all out and cooks everything with detail and deliciousness. Her gravy is so good I put it on my Jello. Cornbread, turkey, Jello, stuffing, green bean casserole, carrots, rolls, apple and pumpkin pie, brownies, all washed down with good German beer. I've feasted like a king over the last month, and though I physically haven't been able to stuff my face myself, the wonderful conversations, laughter and  love I've experienced during that time is  the definition of Grace. 

Happy Thanksgiving Everyone 

Grace's Future

      Earlier this week my Grandma Grahnke passed away after being ill off and on again for the last few years. She lost her husband a few years back and her son, my dad in 2006. Grandma was always kind, I guess all grandmas are, she loved us grandkids so much and loved talking to us on the phone and in person. She always remembered what we spoke about the previous time and would follow up, your needs always came before hers.

      Now that she's passed and I reflect about all these conversations we had over the years I've realized I don't know as much about her as I should. Specifically I don't know what she believed in her heart about what comes after our time on earth. I probably think about what comes next more than others do having ALS, and I'm glad I know what comes next and that's heaven. I talk about finding the Grace in the day to day and I can do this thanks to my faith in God. "For it is by Grace you have been saved, through faith--and this is not from yourselves, it is the gift of God."-Ephesians 2:8. When I think about where Grandma is now I picture her with my grandpa and dad together in heaven once more, but like I mentioned, I wish I knew for sure that's where she believed she would end up.

      Unless a miracle cure happens soon I know for a fact that I will leave this earth sooner than I expected. That sucks but I've made peace with it. What I haven't made peace with is the idea that some of my closest friends and family may not join me when I'm finally rid of this bullshit disease. 

I'm not writing this blog to cast stones or judge anyone, but I am taking the time to be selfish. Selfish because I don't want you crying at a gravesite thinking of how much you miss me when I go. I want you to pause and think about the good times we have ahead, the good times God's Grace can allow us, the good times we'll share in heaven. 

Through the Windshield

      This morning before church Michelle and I lay in bed flipping through our phones. I was adjusting my fantasy football lineups when Chelle pulled up a Timehop photo of us from one year ago to the date where we were at the apple orchard. I was standing upright with the use of a cane and had my AFO's strapped to my ankle to keep me from tripping over my toes. 

      I began to think about how much has changed since that day. I knew I had ALS at the time, but things were different. I was able to dress myself, roll over in bed unassisted, cook, raise a pint of beer to my lips, write, get on and off the couch, shower myself, I even drove us to the orchard in my Civic. Those capabilities are all in my rear view mirror. I now need a straw to drink, wheelchair to move, assitive tech to adjust in bed, a shower chair, and a handicap accessible van to get anywhere. These losses wear on me at times and are accompanied by lots of cursing and tears. 

      $35,421.67. That's a heap of money. That's also the amount of money the Gronk's Grace Army has raised in less than a year for others like me fighting this battle and experiencing the same losses I have. I have rolled onto Capitol Hill to raise awareness and demand change from our representatives to help support PALS. We bought a house to call home, where friends and family can come and be loved. We brought home Wrigley, our dog who we call Son. I give all my nieces and nephews rides on my wheelchair. I started my seventh year teaching and am still teaching to this day. Friends, family and strangers raised over $25,000 in GoFundMe funds to support our needs going forward. 

      Even with the terminal diagnosis, the Grace I've experienced since that day back in October is such that all I can do is be grateful and keep my eyes focused on the windshield. Looking back through the tiny rear view mirror won't get me anywhere. The windshield is full of Grace. The future is going to be great because I know God is in control. I've let go and let God. 

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.