Let me start out by saying that I can’t even imagine what it’s like to be diagnosed with ALS, nor do I ever want to find that out. My game plan for the What Would You Give Campaign was going to be giving up one arm while attempting to ride my bike…dangerous, yes, especially for those of you who know me…impossible NOT! Then, a real knock in the head of reality and I’m here to share that with you.
Up until 2 weeks ago, the most physically challenging event I’ve ever experienced has been playing 100 holes of golf in one day. Exhausting, hot and grueling; again, not impossible. We did this event for 5 years and raised a lot of money. 2017 became the year of pushing and challenging myself in preparation for this year’s TREK. I trained for long days on the bike; no hills around Dallas that compare to the ride from Boston College to Greenwich, Connecticut.
I was so determined to complete all 100 miles of day two, not completing wasn’t imaginable. Yes, we rode hard, we rode long. The first 3 hours were in a torrential downpour! Mind you I was on a rental bike, different clips and different cleats. The roads were slippery and for some reason, the cars have no interest in sharing the road with bikers. All this played a part in gripping the handlebars differently and tighter to stay upright and safe. Did I push myself too hard?? Possibly! Could I have ridden differently? Probably! After a couple of spills (all my fault), I managed to complete all 100 miles on day 2. I was so proud… I had never ever pushed myself to this extreme. But what a sense of accomplishment, all for those who can no longer ride, or walk or talk or breathe on their own. You are my inspiration, you are the reason I ride!
Then Sunday afternoon, the last day of the ride I began noticing tingling in my fingers and weakness in both hands. No worries, it would go away! Well, here we are two weeks later and I still have little use of my hands. I finger peck at the computer to get my work completed and had to have my sister tie my shoes, open water bottles, cut my food and brush my teeth. She laughed every time she had to assist; I found myself very frustrated and short fused. I’m not used to asking for help and even worse at accepting help. The doctors have called this a form of neuropathy that will go away after time. The nerves are mad at me for abusing them…this is payback. I don’t like it. What would I give? I’d give almost anything to get the use of my hands back. I attempted to play golf this weekend, with the girls ducking every time I swung the club for fear I would let it fly. It was by far the highest scoring round I’ve had in over 20 years. Oh by the by, I also have poison ivy and dropped my phone into the water at Laguardia and that’s about all you need to know about that. I found out how dependent we are on communicating with others and when you don’t have your primary source of communication. we are screwed. Thinking of alternate solutions is your only option!
I have learned way more than I ever wanted to know through this experience. I know you can’t take everyday routines for granted. I know Bobby and Clay and Steve and Jay and Madeline and Sarah would love to play the make believe game and get their arms and hands back. Mine will come…theirs, no. Thank you so much for being my angels and watching over me during this ride. I so appreciate all of you and personally commit my efforts to helping all our amazing scientists in the lab to finding that treatment and cure. Thanks for my eye opening experience. By the way; I will be back to ride next year!! Marilyn
To learn more about the #whatwouldyougive campaign click the link here.
