I feel pretty comfortable with my honesty sharing the good and the bad about my journey with ALS thus far. There’s not been too much ugly — until this weekend. It’s been months since I’ve had a good all out cry. I try really hard to live in the moment which had served me pretty well so far. But this weekend, the moments caught me off guard and I was especially weepy.
I was weepy because I miss my mom and my brother.
I was weepy because I wanted to establish community with my surrounding neighbors but that was cut short.
I was weepy because my ability to walk a few feet is coming to an end.
I was weepy because my swallowing is becoming increasingly difficult.
I was weepy because I have friends who are disconnected from my ALS
I was weepy because of the thoughts that my amazing husband is going to be a single father of three and have to start over.
I was weepy because I had to have a discussion about my end of life directives with Eric and my sister.
I was weepy because of the anxiety ALS causes my children.
I was weepy because my schedule is full of palliative care appointments this
I was weepy because I scheduled 36 hours of respite care so Eric could take Ian on an overnight scout canoe trip and that was cut short.
I was weepy because I feel like I’ve upset a friend.
I was weepy because Ian cut his foot and I can’t help tend to him.
I was weepy because my sister and her husband give so much of themselves to us when I should be the big sister physically helping them take care of their littles.
I was weepy because when I cry I can’t breathe out of my nose and my tears feel like acid burning my eyeballs.
I was weepy because my lung capacity is in the teens and there is no cure or treatment.
So there you go, a glimpse into the ugly — I usually don’t go there.