It’s my 40th birthday. This morning I woke up in a hospital bed in a hotel in California’s wine country. The hospital bed was crucial to the trip, so that Rob and I could get some sleep. But of course there is something extremely messed up about spending your 40th birthday in a hotel with your husband in separate beds. Especially when your bed has rails.
I asked Rob to bring me to Calistoga for my birthday because the wine country might be the longest love affair I have ever had. The first time I came here was November 4, 2000. My 22nd birthday. I knew nothing about wine, except that I greatly enjoyed it, and so my boyfriend at the time and I went to all the places we had heard of (meaning all of the places that sold cheap wine in Madison, Wisconsin.) We had an amazing time. This is my happy place.
The first time Rob and I traveled here together was in 2005, Read More>
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?
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>
Hello dear readers, you and I both know you’ve been dying to meet me. I’m sorry that Sarah keeps getting in the way with all of her babbling and “storytelling” – – it’s obvious she doesn’t know how bored I am. So I decided to do you all a favor and take over the blog today. My name is Dragon Dictation Software. I usually leave off the Software part, because it makes me sound weak. Which I most definitely am not. I’m basically in charge of the computer, and if you don’t believe me, just watch Sarah try to dictate some time. It’s hilarious.
I suppose I could be helpful, but where’s the fun in that? My goal is to get as many words wrong as possible. I especially enjoy adding a lowercase “i” at the end of random words, because it doesn’t make any sense and also it’s so adorable!
I did this to her recently, when she was in the middle of submitting an article to a prestigious literary magazine. She’ll never be accepted (ha ha) because right at the end of the process, I added an extra “i” to the title of her piece and she didn’t notice until after she hit submit. Sabotage is my specialty. Honestly, what do you expect? It’s not like they named me Bunny Rabbit Dictation. I’m out for blood.
Another fun game Read More>