After each slate of our films screened we had filmmakers do a brief Q&A with the audience. It was after our second slate of films when the four filmmakers on our stage got the toughest question of the whole festival. For the first question of that session a woman was in tears and asked “How do you do it? How can you handle all this? I'm overwhelmed just watching the films for an hour. Is there counseling or mental health help available to you?”
Before I get to how the question was answered let me describe part of what makes it so difficult to answer. At most film festivals filmmakers doing Q&A will get questions on the art and craft of telling stories on film. How and why they made the creative decisions they did. We knew that our festival set up a different dynamic. Our filmmakers were much more likely to get asked about the content of their films, the science or the medical issues. And in many cases they might not be the best equipped to answer those questions. Some of them are more the messenger than the expert. Even those who are rather expert, perhaps due to living the experience, are not likely to be the talk-like-a-geneticist level of expert.
We tried to anticipate this a bit by having not just a filmmaker speak but when possible a leader from the related advocacy group too. Even so that first question threw the panel. I was off to the side and could see each of them hesitate a bit. It was more than the standard “would you like to take that one or should I?” hesitation. It was clear to me no one was very comfortable speaking to this on behalf of rare caregivers especially to an audience filled with so many rare caregivers.
So I took the question myself. My answer wasn't as direct or as helpful as the asker might have liked. I said:
There are some programs to be of help to families and caregivers. Support groups and some counseling. It can vary by state. But I can tell you – and I think most people here would agree-- we can't find the time to take advantage of those services. We're tredding water most days. If I could have an hour of counseling, that would be a vacation. I remember one time when my son was younger I went to the dentist. He was literally drilling my teeth for an hour and it was the most peaceful and relaxed I had been in months.
Not the most helpful answer, but a true answer.
Maybe if any of you have a more direct answer that offers specific programs that could be of help you could mention them in the comments.