Wednesday, May 27, 2015

The Deck

      ALS awareness month is wrapping up and I've got to admit I'm worried the craze and support we PALS have been receiving is going to cool off. Don't get me wrong, the support and outcry has been amazing, but don't get it twisted, we need the enthusiasm year round to push congress, drug companies, anyone with money to listen. That's frankly a thought that I just don't know how to squeeze into a blog post but felt like it had to be said.
      I've fully started using my power chair on a daily basis. This thing is awesome. I can drive off-road, Abram, my nephew loves rides. So is the van many of you helped Chelle and I buy so that I can get around and regain some normalcy. With that normalcy comes another ALS milestone. This chair has solidified that this speed demon won't be running anytime soon, or he at least won't be speeding the way he used to. Transferring to and from the toilet and shower chair has become a two person job, a decision that required falling flat on my face a few times. 
      I get so mad sometimes that I have to rely on Chelle to help me in the bathroom or pulling my pants up. I don't mess with the stove, too many burns to count. Cooking is something I loved doing and right now it seems like a lost art. I'll start swearing, cursing at silverware, iPhones, the mail, because the feeling of losing your independence is fucking terrible. I swore at the mailbox just a few minutes ago because I couldn't reach the mail at the back of the box.
      The deck, what perfect timing. The sun is out, the birds are singing, I've got chilled beers in the fridge. I took a deep breath, grabbed a cold one, started the iTunes playlist and stared at the beauty God created in my backyard. Chelle put together some burgers, the grill is going, Wrigley is hunting, what could be better? Not having ALS I suppose. But wishing for something I can't currently change gets me nowhere. I can however find Grace in the beauty I see in my wife's eyes, the barley in my cold beer, the dove's song, the smell of melted cheddar cheese on top of a burger, Grace that I'm still here and have so much to be thankful for.

Wednesday, May 13, 2015


      Michelle and I just got home from our trip to Washigton DC for National ALS Advocacy Day. 700+ caregivers, family members and friends came out with 130 men and women with ALS to stand up and talk with our government officials on Capitol Hill. The majority of us stayed at the JW Marriott in DC. It was a madhouse there, in a good way. Many of us zipping around in wheelchairs, hoggin elevators and taking over the bar. This trip really intimidated me, but now that it's come to an end I'm ready to fight even harder than before to beat ALS.
      I'm one of only a few people in the Rockford area to have ALS and at the moment the youngest for sure. It's incredibly isolating to be one of the only people fighting this battle in an area. Being in DC this weekend allowed me to meet guys just like me that have to battle this shitty disease everyday as well. Pat Quinn, who started the Ice Bucket Challenge and who loves baseball, just like me. Jay Smith, a music connoisseur from Austin, TX who relies heavily on music to cope, just like me. Tim Shaw, ex-NFL star who is always up for a good time and has a few speeding tickets on his record, just like me. Justin Dodson, an Iraq vet from Chicago, who doesn't mind cursing on Capitol Hill, just like me. And many other guys and gals that might be older than me or have nothing really in common with me, but who had awesome attitudes and strength that I look up to and can rely on whenever I need a pick-me-up.
      Not only did I meet awesome pALS (patients with ALS) this weekend, but amazing supporters from the Greater Chicago, St. Louis and Wisconsin area. Mike, Melissa, Amanda, Melanie, Sam, Bruno, Julie, Ann, Maryilene, the list goes on. All of these amazing people had some tie to the ALS community. They lost a friend, parent, sister, brother, or are just sick of losing people to this awful disease and are sick of the lack of support and treatment out there that they made it their calling to support the community. I had a blast taking on Capitol Hill, drinking beers, seeing the sights, and leaning on each other for support with these people this weekend. I made friends I'll have for life in these people.
      Michelle and I were able to see the sights together. The Washington monument, WWII monument, which was so cool, the reflecting pool, Lincoln of course, Vietnam monument and got within 4 blocks of The White House, someone important must have been there. We had dinner with an old friend at a DC institution, Old Ebbitt Grill, where I had fantastic crab cakes and a great beer or two from Atlas Brewery. The ALS Association took care of us and put us up in a beautiful room, made sure accommodations were there so I could use the shower and rented a fun scooter for me to get around way faster.
      The Hill. All the ALSA chapters hopped aboard buses for the Hill on Tuesday where we broke off into groups to talk with our senators, congressmen and representatives. My group had five meetings where we met with senators Durbin and Kirk, as well as congressmen Kinzinger, Dold and Ducksworth. We let them know the importance that they support the ALS Registry, designate another $10 million towards research, which is a pebble in the bucket, to support the Steve Gleason Act that guarantees that we have access to augmentive communication devices, and to inact the Dormant Therapies Act, which in a nutshell allows big pharm companies to reinvestigate treatment plans and drugs that have been shelved due to patent rules. If it gets through congress it will be huge for us! 
      Warriors are losing their ability to communicate, walk, hug their loved ones, breathe. Warriors are dying. That's flat out unacceptable. A man with ALS told me this weekend, "today is the worst I've ever felt, and the best I'll feel for the rest of my life." That sucks. That is unacceptable for far too many of us to feel that way every morning. Something must be done and you best believe a fire was lit under my ass to make an impact on this community, not just for my sake, but for all the warriors I met this weekend.


Thursday, May 7, 2015

Island Times

      I sprinted up the 186 steps at the mountain tower on Washington Island. Looked out and saw sailboats on the horizon and the foliage changing on the tree tops over on Rock Island. I leisurely walk back down those 186 steps and crack open a cold one at the bottom. Off to School House Beach where I tip toe across the rocky beach and take a head first plunge into the chilly, clear, harbor water and swim out to the orange raft. I pull myself up onto the raft and look back at the beach full of Islander's with umbrellas, coolers full of beer, fat dudes in bathing suits and kids building rock castles. My pale skin begins to burn so back into the chilled water I go. After a quick nap on the smooth rocks Kurt and I venture into the woods to throw the frisbee with Island Wheats in hand. We whip the disk in and out of trees, trying to run and not spill our beers. We're famished, it's time to get back to the cottage and max a sandwich. 
      I dream of the Island regularly. It's always been a home away from home for my family and the place I look forward to when the times are tough. Kurt and I scattered my fathers ashes up there, we have designated songs that we play from our iPhones when we're up there. John Hiatt and Van Morrison speak to you on the Island. Kurt even tattooed the Island on is ribs. 
      The Island doesn't change, and that's the beauty of it. I remember being shocked when Wi-Fi was added to the Dutch Mill and when a second gas station opened up. How I'm able to enjoy the Island has changed though. The days of me sprinting up the mountain tower stairs are non existent anymore. Tip toeing across the smooth stones at School House Beach won't be happening either. Baking myself on the orange raft and running through the forest, beer in hand, would be tricky. Coming to these realizations fucking suck. They suck. It's hard to put a positive spin on it because this place means so much to me. I've woken in the morning and just balled my eyes out because I hate this disease so much and am so damn mad that I can't do things I once was able to do. But where the hell does that get me? 
      Where I find Grace in this is that I was able to experience those wonderful times in the first place. My bond with my brother increased dramatically having our chats as we hit every side of the Island and had a Guinness at each point. I got to swim with Eliza, and anyone that has done this knows how much fun it is. I learned more from my Mom swinging on the swing at the Sunset than I did in any class. And the Island isn't going anywhere. I'll still be able to go up there and watch the sunset, sit in The Coop outside K.K. Fisk with Kurt and have a beer, grab a slice of pizza and watch the Robert Noble and the Washington steer into Detroit Harbor, and most importantly be with my family in the place we love the most. There's Grace in that. 
      Some day I'll join my dad up there. We'll be able to run those stairs and swim at School House together on the Island everyday with Jesus beside us. I can find Grace in that.