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October 30th, 2012
I am pursued by angels, constant implacable observers of all I say and do. Am I paranoid?
The idea that the universe exists because it can be, and is, observed is supported by both science and religion. In his recent book Phi: A Voyage from the Brain to the Soul, Giulio Tononi writes that consciousness is what is really real. The idea is that the coming and going of matter in a nearly empty universe can be real only if it is seen. Our minds, even with their limits in time and space and comprehension, validate the actual existence of everything we all agree can be seen.
Religion (at least Christianity) posits entities that bring messages from God and return information to God; they are messengers, in Greek, ἄγγελος (angelos). With cheaper cameras and data storage, angels carrying messages are proliferating. When you stroll the streets of a large city, you may be under camera observation most of the time.
A few years ago, at a diabetes support meeting, I met a documentary filmmaker named Lisa Hepner. As Lisa learned more about the Islet Sheet Project, she became interested, both as a diabetic and a documentarian. Our idea seemed like a good one to her. So for a couple years now her company, VoxPop Films, has been angelically observing the development of the Islet Sheet, and of course the people involved.
They have recorded meetings and surgeries, conferences and conversations. When they are at work, you simultaneously get used to them and feel self-conscious. They have enough on me that I think it would be impossible for me ever to be elected to anything.
At some point they named the project Patient 13, which is me. The name refers to a little joke I made, about how the best place to be in the clinical trial is 13th — because that means the first dozen people treated with the Islet Sheet have proven it safe. (In fact, I hope to be Patient 1.) People seem to like the name.
When we started this, I was prepared to see all the science, entrepreneurship, and clinical trials on film. I had not realized that other parts of my life would be so thoroughly recorded, apparently to make the documentary more interesting. They filmed a fundraiser we held for the Paul Taylor Dance Company (I’m on their board). They recorded my presentation at the Strong on Insulin Group (SOIG), UCLA’s adult type 1 diabetes support group, where Lisa and I met. And most recently they documented a full-length read-through of my new opera, Oomph! As I’m an introvert, all this has been mildly disconcerting, but I am adapting.
I have become friends with Lisa and her husband, Guy Mossman. I really want their documentary to be success. The best way for that to happen is for the Islet Sheet to succeed. So for me that’s one more reason to keep working at it.