Tag Archives: rob smells good

Everything That I Understand

If this blog were a work of fiction, I would have introduced a car crash or a home invasion by now, to keep things dynamic for the readers. Or maybe I would just tell some stories about the arguments that Rob and I have around our ALS lives together. There’s nothing fictional about our fights. But there’s probably nothing truly interesting, either. Every married couple argues, just maybe not about the same stuff. I’m pretty sure that’s a direct quote from Tolstoy.

It’s not.

Let me put it this way. If love and marriage go together like a horse and carriage, which we know they do because of the wildly successful relationship modeled on the TV show Married with Children, then ALS and marriage go together like a horse and something a horse really doesn’t like, such as a staircase or a flesh-eating horse disease. Read More>

Real Life

It is almost 2016, a year I couldn’t have imagined when I was a child. The idea of it, sure. I probably expected to be married with children, to have a job. But I had no concept of what that really meant.

Now I have a husband—not someone I sketched loosely in my head, but an actual person with his own thoughts and odors and television habits. I have a little girl who cracks up at knock knock jokes, and who says words that I swear I didn’t teach her. My sister is expecting her second baby—a real-life baby, not just a doll that we named and held and then left under the bed.

My life, it seems, has taken on a life of its own.

As a kid, I didn’t anticipate settling in California, a place that was once only familiar to me via The Babysitters Club books, with all their talk of granola and tofu and sprouts and Knott’s Berry Farm. A place that remained well beyond my reach until I crossed the state line in a U-Haul more than 15 years ago.

And I could no more have pictured a life with ALS then I could an alien abduction or the actual experience of childbirth. It wasn’t that I lacked creativity, but who at a young age could have colored in the life that would eventually be theirs? More to the point, what would we do if we had known? Read More>