The story starts with Kevin Swan. I had known Kevin for some time when he wrote and suggested that we make a video about my life with ALS for his A Life Story Foundation. He had done other profiles, and different ALS-related videos that I’d seen, and I knew that he was very good. So of course I said yes, even though in the back of my mind I was thinking, I’m pretty sure I will be terrible at this.
My friend Sam is a documentary filmmaker and he’s told me that having a camera aimed at you is not as scary as it sounds and that you get used to it pretty quickly. Still, I assumed that I would be some kind of extra special awkward case, and would just be bright red and fumbly the whole time.
Note: we are rarely as special, particularly in the bad ways, as we think we are.
The plan proceeded, and I was excited. Months went by, and then Kevin said that he found a production crew in San Francisco who was willing to do the work. Suddenly, any nervousness that I had was offset by my intense desire to tell our story, and to spread awareness of ALS, and to have my life–and countless others–dramatically saved in a flurry of fundraising and scientific wizardry. Read More>
So far, I have not figured out a good way to dictate a blog post while wearing the BiPAP. My voice sounds comical, like a cartoon villain with post-nasal drip. All the Ms become Bs. To the dictation software, manufactured breath sounds like Os and Hs, so the air whooshing out of the mask adds random letters to my words, ghostly forms that were never really there to begin with. The sound of a secret language. The sound of wind.
It’s not like I have to write this way. I could do the blog after the BiPAP, but since I’m just sitting here staring at the computer, it seems like a solid time to get things done. I’ll always be a multi-tasker, even if my arms don’t work, and even if I’m not actually accomplishing anything.
Sparkling water, Sancerre, sweet potatoes. Whenever my thoughts seem like poetry, they usually turn out to be grocery lists.
These stitched-together lists populate my dreams at night. Partly menus, partly schedules, partly just colors that I saw that day. Last night, I had a dream about overwatered orchids. I woke up craving Life cereal, and when Scarlett crawled into bed with me, the gold in her hair seemed like an idea I had put there to save for later. She smelled like the dog, which is unsurprising since she wears him like a sweater.
Clearly I am losing my mind, but only sometimes. Read More>
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>