October 24th, Scottsdale, AZ. It took me fifteen minutes to get out of bed this morning. Ian and Rae offered to help me get up but I was determined that I could do this on my own. When I’m on my back I feel as helpless as a turtle that had been flipped over trying to right itself. Eventually they ignored my protests, put their arms around me and said “this is going to hurt” and just hauled me up. I think more because they were done listening to my grunting and groaning rather than any altruistic desire to help.
Ian, Luci, Lynny and Ira had various time constraints and we knew from the start that they were not going to be able to complete the whole ride. So while I mend here in AZ, Lynny and Ira leave today to head on down the route with the goal of completing the last part in Florida before they will have to head home. Ian’s wife Kate is driving out from LA with their daughter Violet to pick Ian up. And Luci will be flying home to Minnesota. Which will leave Rae, Daniel, Andi and me to continue on towards El Paso, hopefully, Monday. Daniel and Andi will still be riding. So, for now at least, this is the last time we shall all be together.
So, do you want to hear my plan? Currently, between what we have ridden so far and what Lynny, Ira, Daniel and Andi will ride, there are miles that would not get ridden. So, I’m asking you to help make up that deficit. I would like people to ride and donate those miles. There is a site we’ve set up that you can log into and “Ride for Ray.” Just click on the link below to log your miles. 5 miles, 10 miles, 100 miles. Anything you are able to do will help the cause.
Oh, and one other thing. I would like you to submit a picture or a short video of you riding. Just a short ten second video and send it to me at the following email address: email@example.com. If possible can you tell me who you are and where you are from in the email. You can also post a picture of yourself out on a ride and then put it on Instagram with the hashtag #RideforRay. Then every day on the blog as we go on I will include a video montage of as many of the videos as possible of the people out there “Riding for Ray.” It will have a totally epic soundtrack. I really look forward to hearing from you.
I am contemplating things that someone who took 15 minutes to get out of bed has no business contemplating. Various thoughts have entered my mind about being able to ride the last leg of the route myself. I don’t want to just get on a bike at the Atlantic to ceremoniously dip my wheel. Obviously my physical condition will dictate what I’m capable of. But ideally I need to work for it. Maybe ride the last few hundred miles or so. I would need something on three wheels to do this. The problem with living in my head is that my brain is in constant motion. Even when my body can barely move. I do not do stationary very well. This does not bode well for my future, I know. I’ve been in pain before but it’s been the sort of pain that I’ve been able to ignore. This pain is different. It makes itself known with every step and every breath. The one good thing about all the pain though is that it is the only thing that has so far succeeded in occasionally making me forget that I have ALS. Despite this I’m hoping that it will be back to the level I can ignore by the time we get to Florida in a few weeks.
Now that I’m not riding, Rae has changed her focus. She isn’t shoving food in my face every second. However, one of the things that we were given in the hospital was an incentive spirometer. I have to inhale and exhale into it to maximally expand my lungs and prevent the left lung from collapsing further, and also hopefully prevent me from getting pneumonia. So now, instead of food, every time that I turn around Rae is sticking a tube into my mouth and saying “Here, blow this.”
A long time ago in the initial planning stages I sent Ian a text. “Ray and Ian go for a bike ride. What could possibly go wrong?” While this didn’t go off as planned, it added another chapter to our storied past. Thank you Ian for more than I can express in words.
Peace, love and midwives