Away game

All right, all right. It’s been too long since I put words on a page. I swear I’ve tried, but everything sounded so trite that I wanted to punch myself in the face. But my hands don’t work. So no punching or posting.

Scarlett was trying to drag Otto around yesterday when he wasn’t listening to her.

“Use your commands, not your hands,” I said, instantly inventing a genius rhyme that has probably already been invented. It made me think of something my friend Stephen wrote to me when I was feeling particularly down about not being able to run my household in a more physical way. I’m not talking about inflicting bodily harm on the child or the dog, but simply having the option to move things along with more than just my voice.

Stephen reminded me of a passage from the Ta-Nehisi Coates book Between the World and Me. If I could flip through my copy right now, I would get the quote right. But essentially it was the author telling his son that words are more important than hands when it comes to raising a child. If all I had over you were my hands, he writes (and I’m pretty sure I’m getting this right), then I had nothing at all. Read More>

Jackie Wilson Said

“Let it all hang out.” – Van Morrison

I often open my computer to write a blog post, and then become distracted by every other possibility that my computer provides. Maybe I should FaceTime people. Perhaps it is imperative that I complete a New York Times crossword puzzle. Seth Meyers clips? Look up words I think I should know, but don’t? Order things?

Because all of those options seem pretty attractive right now, this is me confessing that I am ripping this post out of myself, and I’m not sure where we’re going to end up.

Scarlett has been particularly amusing lately, in a cheeky, tweeny sort of way. She starts a lot of sentences with the phrase “Just to tell you.”

Here is a recent example: “Just to tell you, Otto was having sex with his new stuffed animal yesterday.”

To which I responded with a denial so swift it seemed Freudian, “No he wasn’t. That’s his baby.”

She gave me a look like I was a little bit slow in the head. “Well… He was having it.” Read More>

Sarah gets sort of weepy

Last week I visited Cytokinetics, a company in South San Francisco that makes, among other things, drugs to treat ALS. They don’t have anything approved by the FDA, but they’re working hard with a new drug in the pipeline, and I was extremely excited to meet and speak with them.

When I rolled through the offices, I saw many familiar faces in the photos up on the wall. Corey, Logan, José, Shelly. Logan is a young neighbor of mine. He does not have ALS, but a different muscular disease that keeps him wheelchair-bound. The others are my ALS friends. We lost José last fall, and seeing his smiling face and remembering his deep, compelling and radio-ready voice was an emotional moment for me.

The folks at Cytokinetics asked me really interesting and thoughtful questions. What is the one thing I think people misunderstand about ALS that I want them to know? What are the tools I use to get through this with a positive attitude? How has my perspective changed since my diagnosis six years ago? How have Scarlett’s friends reacted to our situation?

Short answers:

It is not constant suffering. You could handle it. Trust me.

My friends. I realize calling your friends tools isn’t necessarily accurate, but there you have it. Jay and Stephen, you guys are such tools. Read More>