Band of Brothers

    On this snowy Valentines Day, this day of love, Chelle has her flowers, we're getting take out and enjoying a nice fire, but I'm not thinking of romance, I'm thinking about brotherly love.

    This war that I'm fighting against ALS is a grueling one. I'm in the trenches every moment of every day. In the trenches with me are some brothers that need recognition. Brendan, Kamm, Tim and Adam are decorated soldiers in this fight. 

     Brendan is my right hand man. My driver, beer orderer, bathroom attendant, the man has seen things I'm sure he wishes he hasn't but stands strong right next to me in the most embarrassing of times. 

    Kamm, a man of few words, but not when he's with me. Kamm is my trusted adviser. "Does this hat look tight?" "What beer should we get?" "Can you make the playlist for the party?" "How do I tell my family I have a terminal disease?" He always knows what to say, how to guide my actions so that I come out looking good and when I need a pick me up. He has been here from day one.

    Tim, a man of extensive knowledge, though 5 years my junior the man provides research and support constantly. In house dentist visits, up-to-date ALS research, even shoulder rubs, the guy is my medic in the trenches. He's always there for a good laugh and keeps my spirits high.

    Adam, a brick shit house, towering over me at 6'5", is my muscle. He fixes the numerous things I can't, creates accommodations on the fly and can lift and toss me anywhere I might need to go that my wheelchair won't go. Not to mention he brings an intimidation factor to my entourage.

    This band of brothers is a crew that shows up time and time again. They don't need to show up but they do anyway. I love them for that and I truly appreciate them. Cheers brothers.

Happy Birthday

   Beep, beep, beep, it's 4:58 in the morning. Time to wake up the dog, feed him and let him out. Make Kris his breakfast and remember to make the pieces of the muffin small enough that he can eat them without his hands and that his straw is bent so that he can reach it without help. You have 17 minutes before Kris needs to be up so enjoy your sanity on the exercise bike. Scroll Facebook, check Timehop and start a podcast. 

     Shake Kris awake from his coma, cross his arms and legs so you can roll him on his side. Then lay his netting behind him, roll him back onto the net and pull the auto-bed lift into place. Strap him in, all eight straps and press the lift button. Make sure not to crush his junk, he hates that. Lower him into his chair and then unhook all eight of his straps. Grab his Old Spice, lift one arm at a time and rub it in. After he changes his mind multiple times, help him put on his shirt. 

Feel for Chelle yet? We ain't even at the bathroom yet! 

     Put toothpaste on his brush, brush his teeth, he'll complain you're being too rough, then scrub his face. He might complain then too. Once he's in place, pick him up and put him on the toilet. While he's taking a number 2 go take a shower. Brush your teeth, dry your hair, start your makeup and then go help him clean up and get off the toilet. Sounds fun right? Help Kris put his pants on, making sure his fly is lined up so he can independently pee later. Put on his shoes. Continue getting ready for work, Kris will eat his breakfast. We forgot his coffee, he's an asshole without it so quickly go make it.  

     Help Kris put his coat on, give him his lunch you made last night, and start the car for him. Fill Wrigley's Kong with peanut butter before you join Kris in the car. 

     This is 5 days every week, no matter what. Michelle does this graceously, tirelessly, for me. This amazing woman saves me day in and day out. She loves me unconditionally, kisses and hugs me and looks smoking hot everyday. The Grace I see and receive from her is never ending. I love you Michelle. 

Locked Up

      Everyone is having a panic attack these days over Making a Murderer, me included. I watched it all, read fan theories on Reddit and even considered signing the petition to get Steven Avery out of jail. I thought about how it must feel to be locked up, in isolation, for something I didn't do. How mad I would be, pissed at the world, fuming, ready to explode. Then I realized Avery and I have more in common than I immediately noticed. Don't get it twisted, I've never been anywhere close to a sexual assault, nor have I met someone who then wound up dead mysteriously. I have however been shackled and held against my will. I wake up and go to sleep shackled every day.

      ALS has me living like a criminal. I have no control about when I get out of bed. I have to wear certain pants and shoes that my wife has to put on me. I am essentially shackled to my wheelchair every minute of the day. My meals rely on someone else to prepare and feed me. If the remote is out of reach TV ain't happening. I no longer can go for a drive and people tend to stare at me when I'm in public. ALS tries to push me closer and closer to solitary confinement everyday.

      It would be easy for me to say fuck it, give up, blame this pain and suffering on others and God. To be honest, the "f^€# it" comes out of my mouth more times than would like it to. When it does my wife who is far smarter than me points me back in the right direction, directly back into the word of God. I take solace and comfort in this verse, "Blessed is the man who perseveres under trial, because when he has stood the test, he will receive the crown of life that God has promised to those who love him"(James 1:2). I dare anyone to say I'm not under trial, maybe not a trial like Steven Avery, or OJ,  but I can still hang my hat on that verse, it gives me a daily dose of Grace.

      

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.