On August 7th, 2009, I brought a small, 2-person crew down to The Vallombrosa Center in Menlo Park, CA for an intimate day of shooting at the annual CFRI Retreat, a very special gathering for young adults living with Cystic Fibrosis (CF) and their partners.
The goal of the 7-day retreat is to provide a safe place for CF adults to connect with one another, to build friendships, and to discuss all kinds of important issues that inform daily life with the disease.
Upon arrival, we joined with retreat attendees for breakfast to get to know them a bit before shooting and to help create comfort with our presence throughout the day. Notably, the morning meal was extremely quiet – except for a lot of coughing, of course – and most participants arrived in their pajamas; tired; moving very slowly and greeting us as very soft spoken.
From what we were told, it isn’t very easy for people with CF to start their day each morning. Many must endure an exhausting, 90+ minute regimen that involves wearing a specially designed vest that rigorously shakes their chest to loosen mucus in the lungs that can make life with CF very challenging.
After breakfast, 25 participants were invited into a conference room for a recorded, facilitated discussion on the importance of the CF community, including how the CFRI retreat addresses isolation and helps to promote self esteem and other social opportunities.
What was so special about this discussion was that it marked the first major production opportunity for this project involving a large number of people who live every day with CF. Further, Ana and Isa served as the dynamic co-facilitators for the morning, and seeing them in this sort of role was both inspiring and informative.
For my part, the session definitely confirmed that my two chief characters in “The Power of Two” are both natural and articulate leaders, who are viewed with great respect among their CF and transplant peers.
Stylistically, my approach to coverage was largely hand held, with the goal of capturing the real time feeling of an open discussion. The group included a number of people who live active lives with CF, some who are much less active due to the illness, and others who are post lung transplant. All were fun, funny and surprisingly hopeful and open about difficult and painful topics.
Upon reflection, the contrast in the room was eye opening. For the first time, I heard the perspective that not every one with CF is actively seeking a lung transplant as their solution to this very serious set of health concerns. For several, managing treatment was their preferred method, while holding out for the promise of a cure – especially since transplant comes with its own specific challenges and an uncertain life expectancy.
My big take away: Part of moving forward with this project will be learning to get comfortable with lots and lots of coughing. With all due respect, some people with CF are forced to cough incessantly, and it goes against all of my instincts as a filmmaker who cares about audio quality not to cringe or ask them to try and be quiet.
With an open heart, I am, of course, more than happy to let that unhelpful impulse go…
Here’s to all of the people living with CF who will appear in this film in the months ahead. I am honored to be your story teller.