Monthly Archives: February 2015

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>

|Categories: Life, Progression | Tags: | Permalink

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>

|Categories: Life, Parenting | Tags: , , , , | Permalink

Back to the DMV

Last week, I had to go to the dreaded DMV. Though I swore I’d made my last visit there, it turns out neither Rob nor I corrected our address upon moving, and our car registration renewal was sent to the wrong place. I took the earliest available appointment, an after-school option, thus ensuring that I had Scarlett along for the trip. Awesome choice, because if there’s anything more fun than going to the DMV, it’s taking a small child to the DMV. Especially a small child who announces the dire need to pee immediately after you arrive and are assigned a number. Winners all around.

We had gotten there early, and, rather than hang out in the depressing and crowded germ closet that is the DMV, we decided to take a walk (as I’ve said before, this is a term I use loosely) through the nearby Panhandle, which looks just like it sounds, a long, narrow extension to the “pan” of Golden Gate Park. It’s a place I’ve taken Scarlett a million times, because our first apartment was just one block away.

Back then, I walked (REAL walking) through the Panhandle almost every day with my new baby, snuggling her into a wrap against my chest or tucking her into an Ergo carrier to go get my morning coffee. I pushed her in a stroller for miles to get to Spreckels Lake, where we watched people sail small, electric powered boats. Read More>

|Categories: Life, Parenting, Relationships, Venting | Tags: , , | Permalink