86,400 Seconds

A day like most occurred. Awake with Paul at 7, but in bed past noon. Always on my back, only able to raise and lower the mattress to raise and lower my legs and back. Then when I ask, Dolan comes to rescue me and get me to my chair. Then I'm in my chair until at some point I ask to be put back in bed again. After being in my chair a few hours today, I realized my feet were just in the exact position that Dolan placed them. Intellectually, I know that they don't move, but it still is a bit unsettling to see them lie so still. So very still.

Hey, but no big deal.

I watched the Ash Wednesday Mass from St. Peter's Basilica, and way too many Extant episodes. My takeaway from a cyborg future is that cool manufactured legs and arms aren't much good to an ALS person, as the brain is what needs tweaking.  My takeaway from the Mass is we Catholics love the pageantry of the Holy Days. This is what pulls me back to the Church, that and the community of our local parish.

In the long term, though, I can't envision this day after day. I could get a feeding tube, and then eventually a trache tube, and I could be stabilized in this chair and driven by others. Heck, I could live a long time that way. I could type with my eyes and speak through a computer. But I can't garden, or play the piano, or hold a newspaper, or read an actual book. Or hike, or sing, or do any of the active things I used to do. If I can only walk in my dreams, then I need to end this sooner than later.

So, I've determined not to have a feeding tube. I will eat solid foods and then liquid ones until I can't swallow anymore, then let malnutrition or starvation or whatever take its natural course. The kids and Paul and I have discussed it, and are prepared. With the help of hospice, the end should be relatively peaceful.  In the meantime, this cheers me each time I see it: