Category Archives: Life

Happy Holidays

Hi. By the way, Christmas is in like a week. Every time I think I’m ready for it, I realize there are nine new things that need to happen before next Friday. It’s a funny time of year, definitely one of the happiest for me, because I have such fond memories of Christmas growing up, and because it’s so much fun to experience the holiday through Scarlett’s eyes.

I love sending holiday cards, love when the tree is decorated, love when I can find the perfect gift for someone. But all of that is certainly made more complicated by ALS, and the weakness in my hands that is really getting in the way of this year’s progress.

So far I’ve had lots of help: a lovely and talented friend who volunteered to take our family photos, people to enter addresses into my computer when my hands got tired, Rob and Scarlett who decorated the tree so beautifully, the Internet and its unlimited gift possibilities. Also wine. And straws. Read More>

|Categories: Life, Parenting | Tags: | Permalink

Why would I be in Parliament’s room?

I just bought a new book, and the sun is shining on the tree with the red berries outside Scarlett’s window. Otto is licking all the stuffed animals that are piled up in a beanbag chair, and it occurs to me that the thing I say the most these days is “Otto, NO!” But suddenly he’s asleep next to my wheel, snoring gently and snuggling with a small stuffed turtle in a non-drooling way that I find acceptable.

It’s a calm day here, a high contrast to last night when the hail hammering down on our back deck woke up Scarlett, and we sat for a few minutes and watched the storm together.

“It’s snowing!” she shrieked, and insisted on opening the door to touch a piece of hail, such a novelty for a kid who’s growing up in San Francisco.

I’m tired this week. My arms seem heavier, and it’s a struggle to correct all the stupid mistakes the dictation is making. I want to scream at it I said Scarlett not Parliament! Why would I be in Parliament’s room? Read More>

|Categories: Life, Meditation, Relationships | Tags: , , , | Permalink

TransFatty Lives

“As my therapist would say, it’s enlightenment by shotgun.”
—Patrick Sean O’Brien

Holy crap. I just finished watching TransFatty Lives, a documentary by Patrick Sean O’Brien. He’s been living with ALS for 10 years. I’m still digesting the movie, but also excited to write about it. The angles, the music, the appearances by Michele Dupree!

I caught my first glimpse of Patrick from across the crowded ballroom at last year’s ALS TDI White Coat Affair. He is a very large dude who was sporting a dyed Mohawk, and I found myself intimidated by his presence. Not scared of him, more just in awe of someone who was owning his situation so completely. The man is just so much cooler than me, a fact that was confirmed this morning as I watched his film.

Patrick was 30 years old when he was diagnosed with ALS in 2005. He was making a life for himself in New York City as a filmmaker, a writer, a DJ named TransFatty. His skill with a camera is obvious, and he sets up shots and scenes so masterfully that it’s no wonder the film won the Tribeca Film Festival Audience Award. It’s real, and difficult, but it’s also funny. There is laughter. There are hot pink walls. There is a very deep obsession with Howard Johnson’s.

At one point, Patrick says, “I never thought life could get more complicated than enjoying Menudo.”

But it did. Read More>

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