Marianne Has ALS

At this point I feel like updates are just macabre news flashes on my slow march to death…but I’m here (and in a mood it seems) so here it is:

• Left hand is a dead weight. It turns out you use your non dominant for all kinds of cool things…oh how I miss scratching an itch or picking boogers.
• Right hand still allows for pecking out a blog post. I think I could write my name with a pen if I tried.
• Legs are going but not gone. I cannot walk alone.
• Talking is ok if I’m not emotional or tired (spoiler alert I’m usually tired or emotional).
• Breathing is good, still YOLO eating.
• Mental health…not so great.

I’m starting the phase of ALS where I’m more object than person. My life is about logistics – how do we get Marianne in the house, on the plane, or off the floor. I’m kind of like a pet: I sit in my cage, I am bathed, fed, and watered and then left to my own devices. Sentences are finished for me.

For those near me, death is still abstract – a thing they know about, but in the “that sort of thing happens in my 80s, I have bills to pay” kind of way. For me death is tangible, I can feel how I end.