Tag Archives: vanity

Bad Behavior

Rob and I had an interesting interaction on Friday morning. It was a total ALS moment, where the frustration overtakes everything else and you realize that what is happening is real, and that you’re out there, traveling with no road map. It’s the definition of ALS: Good luck, keep driving.

Rob had returned from a trip to New York the night before. Our time without him had gone fine, thanks to help from my sister and my two assistants. On Friday morning, we were trying to get back into our routine. I couldn’t help but think about how simple it must have been for Rob that week. Getting himself—and only himself—ready to walk out the door. The luxury.

Some time ago, I decided to wear what is basically a uniform of maxi dresses, and I had recently purchased some new ones. So that morning, we tried on a new dress. Yep, I use the word “we” with zero irony here. It’s a group effort. Rob pulled the dress over my head. He adjusted the straps, kicked my footrest up and lifted me to allow the billowing material to fall towards the floor. “What do you think?” he asked. Read More>

Vain Girl

There exists a manual entitled The Vain Girl’s Guide to ALS. It was written by Carla Zilbersmith, a comedian, actor and singer who was diagnosed in 2007. That year, she announced to an audience of people, “For those of you who don’t know, I was diagnosed with Lou Gehrig’s disease a couple of weeks ago…. I hate baseball. I’d really much rather have been diagnosed with a basketball disease. Maybe Wilt Chamberlain disease. That’s the one where you have sex 20,000 times and then you die.”

Carla is unfortunately no longer alive, but her manual lives on to encourage other women like myself not to become frumpy bag ladies just because our bodies are in early retirement. Read More>