People ask a lot of questions when you’re planning on doing something crazy. Sometimes I think I should make up answers because the real reasons might seem trite. “Do you listen to music when you ride?” No, I prefer the sound of the wind in the rustling corn. “How do you occupy yourself?” Watching silos and water towers get bigger. “Doesn’t your butt hurt?” I don’t have one. “What do you do when you arrive at your destination?” Turn around and ride back. “Do you stop and eat?” Nope. “Oh, come on, you must eat something.” Nope, it’s just 100 miles. So you can see why it might be easier to make something up. I ride my bike to ride my bike. It’s that simple. It’s my moving meditation. The fact that turning the pedals actually gets me somewhere is almost secondary. I have often said anyone can ride 100 miles. All you need is a halfway decent bike and a very understanding spouse. But I’m assured by most people I meet that jumping on the bike and riding 100 miles before lunch isn’t normal human behavior. When I’m on the bike I feel the disease can’t touch me. I know that’s a myth. Sitting here at the computer typing with my one good hand I can feel every muscle in my body fasciculating. I really have no idea how muscles that are in constant motion (even when I sleep) can be wasting away. It doesn’t hurt, but it is a constant reminder that my body has another agenda. On my bike I just feel the wind, the rain, the sun, the cold (the teeth of the occasional dog).
I have never asked “why me?” To be honest it makes perfect sense. I have pushed my body in every imaginable way for as long as I can remember. It protests, I ignore it. Mind over body. Now it’s body over mind. Several helpful individuals have gone as far as to suggest I might have brought this upon myself. “Well, you know . . . ” On October 18th eight of us will set out from San Diego. Most of the focus is on me though, but I don’t know which is harder, being the one going through this or being the one watching a loved one go through it. In the grand scheme of things I’m not sure there’s much of a difference. Rae and I have been together 33 years. It’s difficult to separate us out as individuals at this point. We’re Rae and Ray. We’ll get through this together as we have everything else. With a lot of help from our friends. I asked her the other day, if our situations were reversed what would she be planning. At first she didn’t want to go there. But I persisted. Then she blurted something out about taking someone on a trip to celebrate a certain occasion. I told her, fuck it, do it. We’ve spent our life putting money away, saving, not turning the heat on till December to save for this golden retirement that we’re not going to share. The problem with bucket lists is that by their inherent nature they end with your death. Why wait till it becomes a bucket list? I should have said fuck it long ago. I want everyone reading this to go start a “fuck it” list. For everything you come up with I’m sure, like me, you’ll come up with ten reasons why they’re totally impractical. Do them anyway. What are you waiting for?
A little over a year ago in August of 2014 we became grandparents. In the tub in the hospital bathroom, while our daughter Lisa labored in the room next door, I accepted the ice bucket challenge. I do not believe in an afterlife. This is the one shot we get (although I am hedging my bets and have asked a good friend to save a seat for me next to Marie Osmond just in case). But we all know where this is headed. The only difference between me this year and the person who took the ice bucket challenge last year is that I can’t hide from it anymore. Sometimes I wish I could. Sometimes I wish I could go back to believing I was going to be the first person to actually beat the system and live forever. Sometimes I wish I could go back to when ALS was just a bunch of initials. The road may go on forever but we do not. What’s on your “fuck it” list?
Peace, love and midwives
For Ben 1984-2015