Sometime around the beginning of April, I received a message via Facebook from a Stanford film student named Alaa. In his email, Alaa explained that he had read the Almanac piece on me and was interested in making a documentary about my story. A few phone convos and face to face sit-downs later, my agent (Fehmeen “Ari Gold” Picetti) and I signed our names on the proverbial dotted line, thus handing over the keys to the gold-plated ALS-Calade that is my post-diagnosis life to the budding filmmaker.
The Fine Print
Because this is a student film, there are certain practical and logistical constraints at play in regards to production. First, shooting is limited to two days in order to allow equal access to the equipment for the other students in the program. Second, since they are working with real (non-digital) film, actual footage is limited to four rolls, or forty minutes, of film, which will eventually be pared down to a six to eight minute final product. And finally, because I am a true man of the people, I decided to waive nearly every single item on my rider except for two: an unlimited supply of Cokes with no ice and mandatory grape eating breaks for me and Emma.
Day One of Filming
12:15 PM, Office. I am walked into the room by my valet, seated at my desk behind a laptop and asked to type away on my blog site. I comply but am slightly distracted by the ‘spirited’ discussion between Alaa and David, the cameraman, about light reading conversions and f-stops. Anthony, the soundguy, maintains a low-profile under his headphones and boom mike.
2:30 PM, Entryway. Alaa has me walk across the hardwood floored entryway with my cane. Twice, because my foot was out of frame the first time. I’m exhausted already. Bring me my grapes. And my baby.
3:00 PM Lunch break for everyone.
4:15 PM, Kitchen Table. My mom and I are filmed playing a card game called Spite and Malice. It’s fun except for the fact that she plays a completely different version than I’m used to. I wonder if I’ll look confused on film.
Please join me for Part 2 of this post tomorrow. Gtg, Emma has a checkup now and is scheduled to get a shot. If you listen around 5 PDT, you may hear her wailing.