By now, many of you are wondering if I’ve taken a serious turn for the worst. Or is it worse? I’m never sure about that, and I don’t feel like looking it up. It’s true that my body continues to weaken, and it’s getting harder to breathe. My speaking voice is really quiet, which means that Otto just laughs at me when I tell him not to do things (he openly mocked me by eating my peanut butter sandwich off the counter last week while I looked on, and later he acted all innocent like he just hadn’t heard me telling him no. I hope he gets diarrhea.)
My intention was to blog twice a week when I started in 2014. Now my intention is to blog today, and we’ll just see what happens after that. Summer was good, although as usual it went by so quickly that I feel like I went to sleep in June and woke up in September. Scarlett got prescription glasses and went to her first sleep away camp for one week. The glasses are already broken. I mean, did I really even need to say that? We didn’t even send them to camp with her, because it’s not like we’re amateurs here. But we did think she should wear them to school, and clearly that is where we went wrong.
Sleep away camp was a great success, and when we picked her up she informed us that Read More>
In July, my family acquired a new assistive device called the Hoyer lift. It looks like a torture machine with its dangling chains and numerous metal bars. I half expected it to work the way the machine in The Princess Bride worked, with me as a whimpering Wesley watching the six-fingered man turn the dial up to 11.
I think I’m mixing up my Christopher Guest movies. Also the lift doesn’t work anything like what I described above. Obviously.
As an aside, any time we watched The Princess Bride in my family when I was growing up,
my brother and I would tell our sister that the creepy white-haired dude from the pit of despair was her husband. That’s just the kind of nice kids we were.
The way the lift actually works is that I am rolled onto a mesh net every morning, and my dress is pushed up to my lower back, leaving my bare ass hanging out of a hole in the net so that I am able to use the toilet. It is the height of dignity. But it’s also critical, because lifting me manually takes a toll on my caregivers. I will happily swing around in a perverted hammock if it means taking better care of the people who are taking care of me. Read More>
Sometimes I think that people wonder what I do all day. I mainly think this when they ask “so what do you do all day?” No one is saying it in a challenging way, they just seem genuinely curious about how I
kill spend my time. So I thought I would share a day in the life of me with ALS.
6am: Rob leaves for Chicago, and my assistant Marianela arrives. Otto is let outside. I’m awake, but exhausted. I decide to stay in bed longer even though it’s totally uncomfortable.
6:45: It was a good effort, but I can’t ignore the pain in my back and my feet anymore, so I call for Marianela. She lifts my head and my legs and swings me to the edge of the bed. Then she picks me up and puts me in my chair. I wheel to the bathroom, where she gives me my medication and puts my contacts in for me. We are trying to be quiet because, after a big weekend in Arizona, Scarlett is still sleeping.
7:15: Scarlett wakes up. She gets dressed, and I try to convince her to have breakfast. She eats three pieces of cereal. Read More>