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.

Despite everything that has happened in the past three years since my symptoms began, my desire to look good is mostly intact, and has taken quite a hit from this ALS business. My modesty, on the other hand, left me some time ago (I believe this coincided with childbirth), but that is another story.

It’s not that I think appearance is everything. It’s not that I think I have some amazing sense of style (I don’t: think that or have one.) It’s just that it’s hard to feel like yourself when you’re suddenly rolling down the street in a wheelchair with puffy feet. It makes sense to me that anyone (man or woman) might want to take a little extra care with their appearance to make everything else just a bit more palatable.

With all of the things we folks with ALS have to deal with, you might wonder why I would even bother thinking about this aspect of my life. Here’s what Carla had to say about that:

When I received my diagnosis, I believe that more than I feared death, I feared the loss of function that I was going to experience….I wanted to look like me. You see, I am vain. I like to look good…You would be amazed at how much it lifts your spirits to get showered, dressed, and made up every day, regardless of how sick you are. You would be surprised at how much it contributes to depression when you stay in, don’t wash, and wheel around in your pajamas all day.

She’s absolutely right, and I’m not even sure that vanity is the right word to describe what she’s talking about. Sure, there’s an element of pride in her message, but there’s also a great deal of self-preservation. Of strength.

In the manual, Carla’s tips are obviously based on her own sense of style, one that is far more ornate than my own. I have seen photos of her in a wheelchair dressed in fishnet stockings and long gloves. She talks about loading up on jewelry to draw attention away from her atrophied hands. She advises wearing make-up every day. I…well, I don’t do that.

But I understand what she’s saying, and I know that it applies to much more than ALS. When I make an effort to take care of myself, I feel better. Doesn’t everyone? It doesn’t have to mean wearing mini skirts and high heels, the way it did for Carla. That’s what made her feel good. To me it’s as simple as showering. Getting dressed. Getting rid of unwanted body hair (see? No modesty.) Maybe a little lipgloss.

Carla Zilbersmith called herself vain. I think she was resilient.

“You might be thinking, ‘Well it’s easy for her to say all this. I saw her legs on the cover of this manual and she is the most gorgeous crippled woman I have ever laid eyes on.’” —from The Vain Girl’s Guide to ALS

Share this post on your social platform