Facing Fear: Starbucks and Senators Oh My!

This week I drank my first cup of fancy Starbucks coffee ever. I have the metabolic disorder #Phenylketonuria (PKU), which makes it so that I can’t break down the amino acid Phenylalanine found in food high in protein, more on that here. This includes cow’s milk and is why I hadn’t tried any of those macchiato confections – because let’s be real they’re straight up sugar.

Besides, I’m not a big coffee drinker and wouldn’t want to drink straight black coffee. However a couple years ago Starbucks added Almond Milk and Coconut Milk as substitute options, both are MUCH lower in protein than cows milk and are PKU friendly.

Once I could try one of Starbucks’ fancy coffees I delayed it because on some level I was scared to. I had thought of Starbucks as something I couldn’t enjoy for so long I was in denial that it wasn’t so anymore. Now I understand what all the fuss is about.

Lillian Isabella

I’ve been wanting to take my advocacy for PKU to the next level for a while but the idea of reaching out to a politician was a bit scary. What would I say? Would they even take me seriously?

Last week I emailed one of my Senators to ask if I could speak with her about sponsoring the Medical Nutrition Equity Act. The Act would provide public and private insurance coverage for physician prescribed medical foods – medical formulas (my PKU shake) and low protein modified foods for children and adults with PKU and other inborn errors of metabolism.

Lillian Isabella PKU
I love drinking my shake. It’s called Phenyl Ade Essential

This is incredibly important because the medical formulas and foods ensure people with PKU, such as myself, are able to function at their full capacity instead of becoming mentally disabled. Without insurance the cost of these medical formulas and foods runs approximately $12,000- $15,000 per year.

Right now coverage differs state to state and many families with a loved one with PKU find it incredibly challenging to get the help they need.

Yesterday afternoon I got an email from a senior advisor to Senator Gillibrand and I will be speaking with the advisor about the act soon. I’m excited and a little intimidated but I’ll let you know how it goes!

Overcoming Fear – Directing My 1st Film

I’ve wanted to try my hand at directing for a couple years, been curious about it, daydreamed about it, and even imagined accepting an Academy Award for doing it, but until two weeks ago I hadn’t made one yet. I came up with all the excuses for why not, but mainly it was because I was scared to get started.

Well, last month I was invited to take part in a film challenge called Film Force Five an independent project led by Jose Rodriguez (Director Documentary Programs at Tribeca Film Institute) and Timothy Noble. It was just the push I needed. Psyched the Universe threw this opportunity my way, I accepted and on May 2nd, 2017 I produced and directed my first short film, Working It Out!

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Jose and Timothy sent five filmmakers (including me!) a short skeleton script containing only dialogue and asked us to interpret the genre, setting, character details, action and scene directions, etc. They requested we approach the script with unexpected direction and to feel free to be weird and original. We had one month to interpret the script, go through the pre-production process, and shoot and edit the film. It was intense, exactly what I needed to push through the fear, throw myself into action, and finally make a film.

IMG_4075Since we weren’t able to add any dialogue it forced me to concentrate on telling the story visually – which is what filmmaking is all about! Also, being weird in my interpretation of the script was fun. The script originally only had two characters in it, but I split one of the characters into two without changing the order of the dialogue. I’m grateful to the talented actors Anna Fikhman, Laura Riveros, and Andrew James Gordon who dove into the unusual script and had fun with it.

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My DP/ Editor Benny Krown was also a great asset to have on set. Due to the tight pre-production and shooting schedule, we had to think fast and make changes on the fly. Benny knew what he was doing with the camera and that made ALL the difference. I was happily able to focus on rehearsing with the actors when I needed to.

WorkingItOut Slate

The experienced Sound Mixer Ruben Morales was also invaluable to have on set! We had a spectacularly noisy park location with airplanes flying overhead and a drill going on somewhere nearby. Without Ruben, we would’ve been in trouble. Ryan Pattison was on board to help with sound and Sophia Rodriguez (my sister) wound up with a 1st AD credit because of how much she contributed on the day of. I originally just asked her to be the photographer so I’m grateful for her willingness to help.

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I had always found it funny how Academy Award winners seem so shocked to be winning one. Don’t we all imagine winning one at some point and practice speeches in our heads? Yet to actually put our dreams into motion requires a shift of mentality that pushes the award-winning daydreams out of mind.

By the time I had finished shooting the film I was just so grateful it happened. That by some miracle, the actors came to set safely, the equipment worked, it didn’t rain, we finished filming in under eight hours, we got enough shots to make a film, we all got along, we made it happen.

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Directing is fun beyond my wildest dreams. On set I literally jumped up and down with excitement when we got a great take. I loved balancing all the different elements of the production – sound, shot list, actors, scheduling, feeding everyone. I was in my element. That’s where the joy of creating lies – in taking action, making it happen, and teamwork. Take that, fear.

I learned a lot, gained experience, and created a fun short film that passes the Bechdel test (of course).