Sunday, August 9, 2015


      I would hope that you've all seen an Ice Bucket Challenge by now with the 2015 campaign kicking off on August 1st. Many of you watched me dump ice over my head and then reach for a Guinness. The torch has already been passed to some of you. I know that the IBC may feel monotonous, worn out, a trend. Some may even feel like it's a money grab after you've already been incredibly gracious and have donated to one of the many ALS organizations or the Go Fund Me Account that was created for my family. I wanted to hit pause amongst all the social media noise about the Ice Bucket Challenge and explain why it's so important to me.
      I woke up this morning not because my alarm woke me up but because my left ankle was completely numb and needed to move to regain some circulation. I however can't move my leg on my own and would usually wake Michelle to do it for me but many mornings I don't wake her because she looks so pretty and has earned her rest, so I just lay there disgruntled and read the news on my phone. I can't get out of bed without her help. I can't get off my wheelchair and onto the toilet without her. There are days where I can't even wipe my own ass without her assistance. This morning I'm craving eggs and bacon for breakfast but I can't crack and stir the eggs. I can't grill the bacon because I've burned myself numerous times trying. My days of cooking are behind me (hobby #46 I can no longer do). I settle for a Clif Bar but those are in the cabinet so I have to get my portable arm reacher and awkwardly open the cabinet, knock over the Wheat Thins and graciously drop the bar into my lap. 
      Wrigley, my 8 month old pup is begging to play tug of war. He lays his toy in my lap prompting me to grab on and give a good tug. He might as well have been asking a 106 lady to do the same as I barely entertain him for 7 seconds. It's an iced coffee morning so I struggle mightily to get the ice from the fridge before I give up so that I don't fall out of my wheelchair. Yet another can't. 
      Off to church we go in the wheelchair accessible van that I can't drive but pull right into the shotgun spot and get my fix of sunflower seeds for the morning. I have to use my left hand to fill my mouth because when I use my weaker arm I get seeds everywhere. Once at church we post up in the back row, where the handicap accessible seating is, behind everyone and hope that if anyone sits in front of us they're the shorties of the congregation.
      I could continue on about the many things I struggle with on a daily basis that I had always taken for granted. Maybe I'll share in the next blog. As it goes, this is why the Ice Bucket Challenge is so important to me. My doctors and researchers we've spoken to have no answers for Michelle and I. There isn't a lot of hope out there besides staying steadfast in my faith. But with the sharing and fun there is to be had with the IBC we are building a larger and larger community support system for those who are afflicted with this terrible disease. Our Hope Tank fills when we see our friends, family and celebrities spread awareness to possibly someone who hasn't heard of ALS and that person may help provide the means to finding a cure. It might not get done in time to save me, but I'm confident the Ice Bucket Challenge will save ALS patients in the near future. 
I can find Grace in that. 

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