Monday, June 20, 2016

Father's Day

     Happy Father's Day dads. In my 29 years I have met and been molded by many terrific fathers. Grace guy dads, coaches, teachers, the good years I was able to spend with my own dad and good, old, Poppa Jamerson. My father in law Donnie, who I now call Pops has been a remarkable role model in my life during some formidable years. Firstly, he trusted me with his daughters hand when I asked his permission to marry Michelle. He has picked me up and brushed me off when I've made a complete drunken ass of myself. He has rallied in my corner and fought ALS tooth and nail with me. He loves harder and more passionately than any other man I know, and for that I'm proud to be your son in law.
     Lon Grahnke was my dad, and this September will be 10 years since he passed. I remember my dad differently then my sister Eliza and my brother Kurt. Due to Eliza's disability, she only remembers the happy go lucky dad. Kurt, due to his age really only experienced the tough times with Dad. As the oldest child, I have a more rounded recollection of Dad. I knew him as a sociable protector, the big guy who would engage with anyone and wasn't scared of anyone. The guy who worked his ass off to help me be the scrappiest baseball player out there. Analyzing 9 year old pitchers so I would know when to take pitches and when to go yard. I also experienced the years he struggled with alcohol and would come home hammered or we'd pick him up at the police station. I also vividly remember when my mom explained to me as a young teen that my dad had early onset Alzheimers. I watched the total bad ass I knew as Dad wither away. I argued with him about why he shouldn't eat vegetables out of the can, I had to tell him that grandma was related to him, and shove him when he questioned who Kurt was and would get aggressive with a 10 year old.
     I share a lot of attributes with my old man. We both have very round heads, we will never give up on the White Sox, we're both stubborn to a fault, and unfortunately, we both have had to fight ferocious neurological diseases. Dementia took Dad out. He fought it like hell, he found God along the way, he did his best to embrace the things he held near and dear to his heart before his mind quit on him. I fight ALS day in and day out the same way. Having a parent with Altzheimers has given me an odd perspective. As terrible as ALS is I can still take solace in knowing that my mind won't ever give up on me. As I read back through this post I realize it isn't exactly one of my happier posts. But then again, everything in life isn't happy. However, you can always find Grace in life. Sometimes it slaps you in the face, other times you have to reflect before it comes to you.
     The Grace I clearly find in my experience with Dad's is that sometimes you have to experience the extremely tough times to appreciate how great life is now. The tough times show you how important it is to thank God for the ordinary. The ordinary is extraordinary as far as I'm concerned. Do I wish things could have been different with my dad? To an extent, but without the hardships my family endured we wouldn't be the awesome people we are today, and I sure do love being awesome.      

Tuesday, June 14, 2016


     When you can't move your arms, walk, feed yourself, turn the pages of a book, toss a ball or any other physical activity involving your limbs you are literally stuck. ALS will eventually take these abilities away from everyone who is diagnosed. I feel stuck at times. I scream obscenities, lash out at loved ones, and stray from my faith. But then there are days like today. Today I accepted the stuckness and turned my thoughts to the things I can still embrace and enjoy.
     It's been said that people with ALS have heightened hearing, vivid and precise eye sight, bigger hearts to love and greater compassion. This might all be bullshit and scientifically inaccurate, however today I certainly can feel and embrace these sparked sensory experiences.
My beer tastes sweeter, the tunes are crisper on Spotify, the breeze in the trees seems to have purpose, food tastes fresher, I can hear God's whispers. The abilities I've lost have forced me to focus on the small stuff. The stuff we often forget to make time for and certainly take for granted. Today I'm taking stock in the Grace that surrounds me. I invite you to hit pause and do the same.  

Sunday, June 5, 2016

I am

     I spent the entire month of May advocating for individuals with ALS. I went to DC to raise awareness of the disease and plead with politicians to support initiatives that can potentially save the lives of thousands of people. I raised awareness through social media with articles, facts, personal stories, multiple Facebook shares, some funny and some sad. I appeared on the news to talk about walking away from teaching due to ALS and hopefully snagged some community support. I packed up my classroom for the last time and "retired" all because of ALS.
     I know I made an impact during the month of May. I had a lot of fun, met wonderful people, and strengthened relationships. But I also feel like I lost myself a bit in the fight, the excitement, the cause. I feel like I became ALS. I am not ALS. I am a force to be reckoned with. I am a friend. I am a White Sox fan. I am a beer drinker.  I am sarcastic. I am a husband. I am an uncle. I am diverse, joking, confident, good, emotional, arrogant, judgmental, a sinner. I am also saved.
     I received many prayers for relief from this disease in recent weeks. Many condolences, many tears, I received many forsaken looks and pats on the back.  Do I wish I had my abilities back? Of course I do. Do I hate the suffering ALS brings on families? Damn straight. Do I want a cure for ALS? More than anything. However, this disease did reel me in from the abyss. I was living an enjoyable life, one full of friends, family, a career, I had the stability we all seek, but I was missing substance. This disease made me find myself and redefine the man that I am supposed to be and why I am still here. Though the hardships are obvious and tremendous, they are temporary. Thanks to my rekindled relationship with God I am living for the eternal life. I am here to be an example of love and Grace. I am His.