Tag Archives: kevin swan

Movie Making

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>

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>


In 2013, I was connected to Kevin Swan, a young filmmaker from Florida, who also has ALS. Kevin and I made a phone date, and quickly found that we had similar attitudes to living with the disease, mainly that we were looking to stay positive and to focus on what was good in our lives.

Part of our conversation centered around the idea that we really feel lucky to have been given the new perspective that we have, with enough time to actually put it to use. We meant this in comparison to having your life snuffed out in an instant, never having the chance to tell people you loved them that one last time. Sure, we all know that life is fleeting and that we’ll someday die, but until you’re facing it in a more immediate way, it’s hard to wrap your head around the concept. I’ll never have everything about this life figured out, but having ALS has helped me to pare away some of the extraneous bullshit and think about the best ways to spend my time.

Kevin decided that his time would be well spent by starting A Life Story Foundation, whose mission is to Rewrite the End of ALS by raising money for research and awareness building. He uses his background in film to tell the stories of other people with the disease. “ALS does not define who you are,” his website says. “It’s just a part of your story.”

Having known Kevin for a couple of years, one thing I’ve noticed is that he always looks dapper. Nice jackets and ties, big smile. That kind of effort is not easy, but it’s really important. It’s just one more way that we continue to care about ourselves, when we can’t always care for ourselves. Even in a t-shirt and jeans, Kevin Swan is nicely put together. So you can tell that being here still matters to him.

Although my once-muscled limbs are melting like ice cream, I can appreciate that desire to look your best. I mean, I wear Uggs every day, like someone’s toddler going to music class, but I brush my hair. I put on one of my maxi dresses, and I try to feel grateful for another day. I try to hold on to that feeling that Kevin and I still share, that we’re lucky to be here. That we still have work to do.

Read Kevin Swan’s story here.

Watch Kevin Swan’s story here.