Category Archives: Life

A Day at School

It was a big day here yesterday, which you would have known if you’d seen me, because I was wearing lipstick. Like, actual lipstick, not just the bacon chapstick I slather on daily. In case you think that was a joke, that was not a joke.

Do I lose credibility immediately upon admitting that my “big” morning involved volunteering for the Carnevale party at Scarlett’s school? I just thought the children would appreciate that bit of extra makeup effort. I also wore a multicolored beaded necklace for them, because I am nothing if not festive. Although I am evidently not as festive as one of the other moms there, who was dressed head to toe as Queen Elsa.

I have always been the kind of mom who wants to be very involved at school, but after ALS sat me down for good, I was certain my classroom volunteering days were over. I normally just watch the email requests go by, thinking I won’t be helpful, best to let someone else do it. But last week our room parent sent a note saying she still needed help, and instead of blowing it off again, I thought, well, why not me? Read More>

Lies We Tell Ourselves

Odd but true: adapting to life with ALS requires forgetting some of the details of life before ALS. I know that my body once knew how to run, how to climb a flight of stairs, how to chop an onion and stir it into a sauce. But now those actions seem so beyond me, they are nearly unrecognizable as functions I once performed.

The closest thing I can come up with to describe this a bit more generally is the experience of giving birth. After Scarlett was born, I was smitten and amazed, but I was also honest. Childbirth had been horrible. Literally, that is the word I used to describe it for a few days, until my body somehow sloughed off most of the memory, filtered it through a baby powdered light, and returned it to me, all soft and desirable. I know there was pain, but that’s a theoretical knowledge. In reality, I thought, it wasn’t so bad. I could do it again.

The point isn’t that childbirth is terribly painful and everyone who thinks it isn’t is kidding themselves. The point is that our bodies (or maybe just our brains) adapt. Read More>

Out on the Road

When we moved into our new neighborhood last year, I looked at the hills around our house, looked down at my wheelchair and thought Hell No. I took one harrowing walk with Scarlett “around the block”, which took 20 minutes and included several encounters with cars blocking the sidewalk, forcing me to wheel down short, steep driveways into the street.

Scarlett was riding her bike about a half block ahead of me the whole time, and if that sounds ok to you people who live on perfectly flat streets, let me just say that it was really not all that ok. I’m from a suburb of Chicago where we went sledding down hills that weren’t as steep as my San Francisco street. That first “walk” resulted in no injuries, and only one suggestion from a stranger that I attach a leash to Scarlett’s bike, but I was seriously sweating.

That was in my first wheelchair, a lightweight cutie that couldn’t handle a whole lot of climbing. When I got my new wheelchair, it was time to try again. I wanted to head out with my daughter, explore with her, just be alone with her for a while. But I was freaked out. Read More>