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. At which point, I would leap out of my chair and run in slow-motion down the beach with my hair whipping behind me and Otto on my heels, eventually tripping me, because otherwise this was all getting far too trite. There was no room for stage fright in this Chariots of Fire meets Wayne’s World mash-up.
And so it was that one day in December, four fine looking fellows walked into my house for the sole purpose of paying attention to me all day and listening to everything that I said. For a number of reasons, that day goes on the list as a highlight of my life. I recommend that everyone try it. Skip the ALS part, if you can.
The crew came back in February, with a few different people, and I wanted to invite them to return the following day just to hang out. But they were doing things like surfing and attending the Grammy Awards, because that is how freaking cool they are.
I love them. Let me tell you more.
Tim Pries is the Executive Producer at Where the Buffalo Roam. He was my main contact, and, in addition to organizing, monitoring, and producing, he found time to tame Otto in the backyard, so that we wouldn’t inadvertently have a canine co-star. He is the reason that you don’t hear any barking throughout the video. And, really, a main reason that there’s a video at all.
Nick Carbonaro, a fellow paisan who day-jobs at Google, directed the film, and conducted the interviews, which included rolling his eyes at me when I couldn’t get certain phrases out of my mouth without laughing. He was also in charge of water, handing me my Camelback after every question, unless he thought I didn’t deserve it.
David McMurry, the incredible cameraman, basically spent his days looking as though he was participating in a 10-hour Iyengar yoga class (that’s the kind where you hold an uncomfortable pose for a ridiculous amount of time and don’t complain and usually you’re not even holding a heavy camera.) While David is working, the other guys take pictures of him and the implausible positions he finds himself in to get the shot he needs. David is the reason the video is enjoyable even without sound.
Kiva Knight of SteelHip worked his lighting and grip magic. On day two of filming, his business partner Drew Nelson took over, and now I know that grip means being responsible for building and maintaining all the equipment that supports the cameras. It was a major learning experience. #applebox
The whole thing was truly fabulous, and as of the moment right before I hit Publish on this post, the video has been viewed more than 111,000 times. You can watch it here. THANK YOU to everyone who has shared it!
And thanks to the following people for making it happen:
Vision: Kevin Swan
Director/Waterboy: Nick Carbonaro
Production Co: Where The Buffalo Roam
Producers: Tim Pries, PJ Koll, Chris Whitney, Phil Tang
Editor: Stan Yager
Cinematography: David McMurry
Music & Sound: J.R. Narrows
Light & Grip: Kiva Knight, Drew Nelson
Animation: Jessica Gibson
Color: Ayumi Ashley
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Sarah… how beautiful. If this does not inspire people to spread the word, I don’t know what will. Thank you for this tremendous effort on your part. Thank you Rob, for helping Sarah each and every day. Going now, to spread the word and share your wondrous video!
Thank you Sarah.
Sarah, just watched the video. ABSOLUTELY AMAZING. This will definitely make a huge difference in spreading the word and getting more funding.
You rock,
Big love to you and your gorgeous co-stars Scarlett and Rob!
This is very well done. It evokes so many different emotions. Your willingness to share your story , both in your writings and in your video, is impressive and is sure to have a huge impact on your goal of finding a cure. You ARE making a difference.