Category Archives: Life

Something in the way she moves

Yesterday Scarlett and I joined some of her friends from school and their moms at the International Hip Hop Dance Fest in San Francisco’s Palace of Fine Arts. The performers—10 different groups—were incredible. Even the youngest ones made it look easy, circling hips and popping shoulders, windmilling arms and feet rarely flat on the floor. There were several acts that made me want to stand up and applaud. But, you know.

I get chills watching people who can dance. I’m not a very good dancer. I mean, obviously, people with severely weakened limbs are probably not tearing it up on any dance floor, but what I mean is, even before ALS took my mobility, I wasn’t a very good dancer. It didn’t really matter. I LOVED to dance.

The only times I’ve ever performed in front of an audience were my days on the high school drill team. This meant football game half times and weekend competitions, flying splits, kick lines, and Vaseline teeth (keeps you smiling.) It was fun to practice routines with the team and to compete, even if it did mean wearing the same itchy and uncomfortable nylon uniforms that other girls had been sweating in for twenty years. Read More>

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Birthday Surprises

I turned 36 on Tuesday. It’s not a big birthday or anything, so I spent the morning watching The West Wing and eating peanut butter cups, which—believe it or not—isn’t the way I normally act on a Tuesday.

As it was Election Day, I did take some time out of my busy Netflix-streaming schedule to study the gazillion propositions on the local ballot. That afternoon, my mom and I walked (I use this term very loosely) over to a garage in our neighborhood so I could do my civic duty. They had a low booth for people in wheelchairs, and I mostly ignored my struggling hands as I connected arrows on 7 pages. I love to vote. I love the sticker they give you. I’m totally serious about this.

The night before my birthday, Scarlett was beside herself with excitement. “Your present is a Bandwagon shirt!” she screamed. “IT’S PURPLE!” Bandwagon is the name of the company my sister and her husband run, and this was a great gift because I’m always trying to figure out how I can be more involved in their business without actually doing any work. Wearing the uniform is the perfect solution. Read More>

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Don’t Cry for Me

“I don’t ask for your pity, but just for your understanding—not even that—no. Just for some recognition of me in you, and the enemy, time, in us all.” —Tennessee Williams, Sweet Bird of Youth

This weekend, my family and I went to the Bridge School Benefit concert. It’s a show put on by Neil and Pegi Young to raise money for the school that Pegi co-founded in 1985 to meet the needs of their developmentally disabled child. During the show, children from the school sit on the stage, and there are videos throughout to show some of their stories, as well as snippets of daily life at this incredible institution. I’ve been to the show at least 5 times, but this year, I watched the videos with a different perspective.

In the past, I have felt sadness and awe as I watched. Some of these children are severely disabled. Their families are clearly doing all that they can to give them the best lives possible, and the kids are shown smiling and learning, working hard. It’s honorable work, from all involved, and not easy, I’m sure. Still, by viewing their stories the way that I was—with pity—I now feel that I’ve been missing the point. Read More>

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