Sunday, March 27, 2016

He is Risen

   This is the day that the Lord has made, let us rejoice and be glad in it. I've been naive to how important Easter truly is or what those words mean. Jesus experienced one of the most painful deaths imaginable and did so to save us, we who truly do not deserve it. Then he went on to perform the greatest miracle of all time in the resurrection. Conquering Death.
    Jesus' resurrection built a bridge between our sinful and torn day-to-day lives and tied us to the hope and love that God can bring in our life now and in heaven with Him. I know that these are powerful words, words that come straight from the Bible and from a pastor's mouth, and those words can be hard to relate to on a daily basis. I struggle day in and day out, I wrestle with doubt, and at times even hatred towards God for allowing me to have ALS, for taking friends too early, for my dad dying, and for the strife that has been in my life and the lives of those that I love. However, when this fear and anger takes over and this darkness falls upon me, Christ and his hope and his love find a way to push into that darkness and make me realize that even the death that may soon be upon me cannot consume me or leave me scared. My pain has a purpose. I have to take glory in my suffering because that suffering will produce perseverance; perseverance; character and character; hope. That hope that I carry with me every day erases the fear of death that I have, it lets me see and embrace the grace I have around me and it makes me confident that my Lord and Savior Jesus will be standing on the other side of death when my time comes. He will take me to paradise away from this life of pain, tears, and anxiety. He is here for us all now and forever. 
    God bless all of my readers, and I hope that you have a wonderful Easter with your family and friends. With love, Gronks

Wednesday, March 16, 2016

Twilight Zone

     I just left work and I'm screaming out of the parking lot in my car. Music is blaring and it's a beautiful day. I'm ready to go to the gym. Once I get to the gym I'll run a couple laps, lift some weights, and get some good stretching in before I head home. Once I'm at home I'll take a nice long shower, Michelle likes to sit in the bathroom and talk to me about our days when I take a shower so that will be nice. After that I will cook some garlic parmesan encrusted chicken with some spinach for a nice home-cooked meal. Then, we sit down to eat I'll do the dishes and maybe chase Wrigley around the backyard. Finally I'll crack an ice cold beer and cuddle up next to Michelle for some mindless television with the warmth of her hugs and the sweet smell of her hair pressed against my chest.
     Oh, wait… No I won't, I won't do any of these things, as much as I would love to, and as much as I dream about doing that every day, it doesn't happen with ALS. Rather, I will sit and wait at work until my ride can leave and can take me home because I can no longer drive. Once I get home, mind you I had to skip the gym altogether because that ain't an option with ALS, I will have to watch Michelle make dinner. Even though I would love to help her. When we are ready to eat she will have to feed me. I won't be able to help her with the dishes, and I won't be able to chase Wrigley around the backyard. I will be able to watch mindless television, but I will have to sit in my wheelchair next to the couch with an armrest in between. Michelle and I missing the embrace we once were able to have. I can't use the bathroom on my own. I can't go to bed when I want.  It all has to be with someone else's assistance! And when I'm stressed and want to blog about it I can't even use my hands anymore! There isn't any way to sugarcoat this, it just flat out fucking sucks. 
     But, I refuse to wallow in my sorrows, let ALS rip everything I love from my grip, I refuse to lose sight of the grace in my life. I still have great friends that get me to and from work. I can still take that relaxing shower, though it might be sitting down and someone else lathering me up with soap. I can still drink that ice cold beer (through a neon straw.) I can still enjoy that home-cooked meal with my wife. And though Michelle and I don't cuddle the same we have found ways around it. Let's be honest, I can't keep myself away from her. Grace is still all around me, I just have to remind myself to pause and look around and find it.

Friday, March 11, 2016

IronHorse Courage Award Speech

The night was incredible! Thanks to everyone who came out last night and supported us. I can't wait to do it again!

First and foremost I'd like to thank the Chicago chapter for their tremendous support of my family and dedication to making my life better. 

I am conflicted up here on the stage. I am very honored to receive this award but at the same time I really wish I  wasn't because then I would not have ALS. What I do wish is that my legs still worked, my arms still worked, then I could be out there on the dance floor juking with my beautiful wife. But, due to ALS that is no longer possible. Instead, I'm confined to this wheelchair, someone has to hold my speech out in front of me, and later when I got to take a piss thanks all these beers someone will have to unzip my fly and help me pee. ALS can kiss my ass.

I've been an advocate for others ever since I was a little kid. My little sister Eliza has Down syndrome and when we were younger I was the only one who could understand her. I would translate her delayed speech to my parents, friends. 
This advocacy for kids with special needs translated into a career as a special education teacher where I continue to advocate to this day for individuals with special needs. I've always fought for the underdog. You can make the case that I'm the underdog now. 
ALS robs you of your strength, your hobbies, independence, the list goes on. It's hard to face the diagnosis and keep fighting when it feels like everything is being stripped away from you. 

I've found courage in this fight against ALS in my beautiful wife Michelle. Don't let her small stature fool you, her faith in God, perseverance, and advocacy for me and others with this disease are tremendous. 

My Gronk's Grace army that gathers its forces at a moments notice for anything, whether it's a beer and an ear after a brutal day or a commanding turnout at the Walk this fall, their courage, love and dedication is infectious. 

The prayers that have showered me from thousands of people, some I know well, others I don't know at all have lifted me to keep fighting. Knowing that my pain has a purpose. A purpose I don't fully understand but can fight for. 

What I know for sure is the courage This underdog has is not self-created. Michelle's pure love for me, the overwhelming advocacy from my friends and family and the support from God have given me the courage to use this disease to make a difference. This underdog still has a lot of fight left in him. A fight that I'm going to use to keep advocating for people with ALS. ALS can't win, because I've already won.

Thank you, God bless.

Cheers Fam!