It is now almost 2 years since I was diagnosed. All in all, my progression continues to be relatively slow. I am almost embarrassed to talk about many of my symptoms given what some of my friends are going through. I can still drive, get dressed, and feed myself. I can still do most things I need to do for myself in my day to day life. However, each of these things is getting more and more difficult. They have moved from being harder than they should be, to hard. Showering and drying off and getting dressed is a tiring proposition, so I don’t do it that often. Just ask my wife. At this point we can see that I won’t be able to do some of these for too much longer. Driving the kids to school, taking them to the zoo on my own, this may be the year I have to give these things up. Not being able to drive is obviously scary because of what it means to my freedom and the time I get alone with the kids, but it’s more than that. It also takes away one of the ways I can still contribute to keeping the trains moving on time for our family.
For example, we have our house on the market right now. It’s not the easiest thing to keep the house in “showing” condition with crazies running around with toys galore. So while we typically keep the house in pretty good shape, it’s a scramble when someone calls and wants to see it. The most efficient way to clean up is for me to take the kids and get out of Dodge. Then Cara’s left to actually get things done. This has been our strategy for lots of things around the house. I disappear with the kids, and she works. Obviously, this isn’t an equitable division of labor, but it has become the unfair default. When I can no longer drive, we will have to change the dynamics once again.
So in many ways, this year is going to be about logistics. What do we have to do to keep our heads above water? Steve Gleason is famous for saying that given where medicine is right now for ALS, “Technology is the cure”. I can see that day coming, but for us right now, logistics is the cure. Figuring out the hired help we need, how to get it consistently, and how to make sure everything doesn’t just fall on Cara. How do we make our daily lives manageable enough so that we can focus on other things?
If the kids are fed, laundry is done, and everyone gets a bath at least once a week, then we are winning. Then days are again about doing puzzles and reading stories and playing in the yard and going to ballet and getting the kids down and having a moment together of peace and quiet on the couch. Then physical limitations are just annoyances. These aren’t insurmountable tasks, but ones that need to get done.
Once we accomplish them, then I know we will spend another year making incredible memories. Like the afternoon in the fall when we had our family pictures taken and the kids somehow acted perfectly. Afterwards we noticed a brewpub at the edge of a pond in the same complex. So we sat on the dock in the sun, the kids feeding the blue gills and turtles and Cara and I enjoying a beer, laughing, waiting for one of the kids to fall in, and absolutely amazed when neither did. Memories like these:
Once we figure out the logistics, my third year with this disease will be remembered as the one in which we find a cure!