Sue your husband and mine were at polar opposite in their choices on ALS, and in the end the same result. I totally hear what you are saying, and I think that fact shows the reality of ALS better than any other.
Lori, I also see what you are saying about that inner voice. I heard Brian’s loud and clear the day he called me home from work, pastor in tow to tell me he was done.
I remember him insisting on looking at his legs that day, and me not knowing why. He later told one of our carers that when he saw his legs he knew for sure he was done. That voice looked at those withered legs and said enough already.
Wish, I know just what you mean! I have some weirdly happy memories of Brian’s two hospital stints. I think both times we were just very relieved he was not going to die imminently and that he felt so much better. So the fact that each of these hospital admits marked steep steps in progression did not make them entirely negative.
Watching a winning Vikings game in Brian’s room in the fall of 2017 after the Radicava disaster is among my fondest memories of our last few years together.
I did indeed close on my refi yesterday- now the house title and the mortgage are truly in my name and mine only. I also bought the 2018 Camry LE. Funny, but it was a CALS online friend in London who told me she loved the car and I should check it out. From Japan to London to my garage
. It’s a joy to drive.
I am thinking when the time is right, which may be in two months or two years I should being writing the story of Brian, ALS, and me. I would not seek to publish it, but to get it to other CALS and PALS.
There are several things out there by PALS. My Year of Living With Joy, Rowing Without Oars, The Butchers Daughter, etc. CALS though are Mostly heard from on these types of boards and groups.
Our story, like everyone’s is about more than just us. It’s about the American (in our case) medical establishment, and about human reactions to non negotiable, tragic events. I think such accounts can serve as a historical record. Maybe only about 5400 people in the U.S are diagnosed with ALS each year, but many more thousands are impacted by it and it’s not a Facebook photo op, ice dumped on head.
Anyway, that’s for the future. I’ve got an old car to get ready for a buyer today. Getting 40% more than Inwould as a trade! Go me!