Interview: ‘No Ordinary Campaign’ at 58th Chicago Intl. Film Fest
CHICAGO – When Sandra Abrevaya met her future husband Brian Wallach while on the staff of Barack Obama’s 2008 campaign, their future seemed exceedingly bright. But then Brian was was diagnosed with Amyotrophic Lateral Sclerosis (ALS, also known as Lou Gehrig’s Disease), and his prognosis was dim. It was time for the couple to use their knowledge to make change.
Their story is told in the new documentary ”No Ordinary Campaign” (USA), which premiered at and has one more special screening at the 58th Chicago International Film Festival (click title for details).
The films tells that Brian was given just six months to live, which inspired the couple’s expertise to create legislation to help other ALS patients to gain access to new experimental drugs and disability benefits. Brian decided to become a face of the disease, recruiting other patients to become a founder of “I Am ALS.” In the story of Brian and Sandra’s efforts to cut through the red tape of Washington, D.C., the highest level of inspiration, passion and success is the result.
Congress and Beyond: Sandra Abrevaya & Brian Wallach of ‘No Ordinary Campaign’
Photo credit: ChicagoFilmFestival.com
Patrick McDonald of HollywoodChicago talked to the power couple, and besides the special screening of the documentary they will also appear on the 58th CIFF Red Carpet on Friday, October 21st (details below), with Executive Producer Katie Couric, Executive Producer Phil Rosenthal (“Somebody Feed Phil”), Illinois member of Congress Mike Quigley (who sponsored their legislation) and Illinois Senator Dick Durbin.
In an excerpt via Zoom from the interview with Sandra Abrevaya and Brian Wallach, the couple talks about the challenges of their campaign. The rest of the interview is transcribed below …
HollywoodChicago.com: When you decided to give ALS a public face in this campaign, starting with yourself, what was the reaction initially from other ALS sufferers to expose themselves so to speak, when the first and forgivable instinct is to go away before eventually going away because of the terminal nature or the disease?
Brian Wallach: I think that has been the best thing about ‘I am ALS,’ it has created a community where people do not feel ashamed or afraid to share their story. Instead, they see the power in their lived experience and their ability to give voice to what we live through with ALS.
So for me, the whole reason we did this was to make sure that people see that ALS can and does affect anyone, and is part of the solution to many neurodegenerative diseases like Parkinson’s, Alzheimers and beyond.
HollywoodChicago.com: How did the film become part of what you were doing in the campaign, and how did you and director Christopher Burke decide how to tell the story, and keep creating the narrative, without the intrusiveness of constant filming?
Wallach: It began as Chris just tagging along with us and capturing footage that he knew would never be repeated because of my progression. What we ultimately did was try to tell the story that has the personal exposure which allows people to really engage with the film, but to balance that with the campaign itself. I will say also that we had to redo the film three or four times because we kept having amazing victories and we wanted to capture them.
Sandra Abrevaya: Yes, to that point we thought we were done with the film and then last December the ALS Act passed, so we thought that’s the real ending of the film. And then, just three weeks ago this first new drug in five years for ALS treatment – called Amylyx – was approved. So we held off submitting the film to the Chicago International Film Festival because we had to change the ending again.
HollywoodChicago.com: I’ve read Lou Gehrig’s biography, and the honesty about the disease in its last stages for him was counter to the notion of the “luckiest man” narrative … what problematics, in your point of view, was it to name ALS after him, but hide his public face as the disease ravaged him, as it affects everyone afflicted?
Wallach: The benefit of naming the disease after Lou Gehrig is that there is a whole lot of people who know about him, and don’t know the details of ALS. And this is an issue I’ve struggled with myself, because I’m so public, and I don’t want to make everything about the bad days.
Instead, I want to find a balance where I can educate people about ALS and how hard it is. As you can see right now I’m in a wheelchair, and I have to talk through Sandra … and no one ever wants to talk through their spouse. [laughs] But I also want to show there is real reasons for hope for patients living with ALS right now, and that has never been true for the 150 years previously … so we have a chance to help patients avoid the ending that Lou himself went through.
Brian & Sandra at the Premiere of ‘No Ordinary Campaign’ at the 58th CIFF
Photo credit: Brian Wallach/Sandra Abrevaya
HollywoodChicago.com: As human beings in general, we tend sometimes to collapse into our own selfishness, depression and anger … those being natural and human emotions. How does being selfless in this fight and campaign help to change your attitude about moments of selfishness, depression and anger? And what acts or work counter those emotions most effectively?
Abrevaya: Brian and I met while doing public service, it’s clearly something that even before we were diagnosed it fueled us, it made us feel good. So when we were diagnosed, we knew that we could … through a version of public service … change the course of this disease with our community and our network, we knew that would make us feel good. That’s the path we took for lots of reasons, but mostly because we saw possibility and that opening that we knew would fuel us.
Wallach: Adding to that, as we’ve been on this campaign I think we’ve become more open to and aware of the bad emotions and the good ones. So for me, I will say that each day I have a bad moment when I become depressed or when I feel selfish, but I will balance those out with an appreciation for all the amazing things that I’m lucky to have around me, and with a community that helps inspire each of us to dream bigger, and to do the impossible.
HollywoodChicago.com: To give someone an idea of what it is like to go from healthy to debilitated, what normal activity can you honestly say that you’ve missed the most, or have expressed that you have missed the most?
Wallach: There are two examples. Number one, it’s not being able being able to carry my daughters. I cannot do that anymore. And secondly, it’s having a conversation with my daughters as well. They often ask, “what did you say Dad?”
HollywoodChicago.com: What are the close-up elements of Barack Obama, that people do not consider, that if history serves him will carve his name into our story as one of the greatest of U.S. presidents?
Wallach: There is actually an amazing line from the documentary that didn’t make the final film. President Obama said when when you have community organizing you have the organization, but even more importantly you have community.
Abrevaya: One of the most remarkable things that President Obama did for Brian and I was in addition to teaching us the skills of organizing, he created this community … we call it the greater Obama family network. It has rallied around us in this remarkable way and has been a key part of this new campaign and made such an impact. In everything he’s doing, sharing and speaking about now, he’s encouraging the next generation to become leaders and believe in their ability to drive change.
We hope we’re carrying that torch in part, along with so many others, and it’s been a remarkable gift from him to give that to us and others.
Wallach: Most people focus on how smart he is us, but for me the most important trait is how he is able to be down to earth, and that is something we are missing because a lot of people tend to retreat into their silos. For example, when you have a president like Obama, and he walks into a restaurant and sits down with people, he will push them to revisit their pre-conceived notions about their fellow human beings. That would be the most important thing for us to carry forward.
Post Screening Q&A for ’No Ordinary Campaign’
Photo credit: Brian Wallach/Sandra Abrevaya
HollywoodChicago.com: We live in divisive times, but your success in getting major legislation passed for ALS patients proved the power of the collective spirit and government to actually help people. In that experience, how can that continue despite our divisions?
Wallach: First, thank you. I think the thing I took away from this challenge that despite the background noise in politics today, if we’re able to reduce policy to a few key things that we all agree have to be done – that are not political but human – then we can actually see people come together and make them real.
It won’t be perfect, but look at the ALS Act … what I wrote the first time with member of Congress Mike Quigley and others was different from what was passed. But in what we did, we were able to say that it was not a ‘blue’ or ‘red’ issue, this an issue about doing right with our fellow human beings. And with that mantra we were able to push through a bill forward that should have never passed because of the current political climate.
I’m always an optimist, and maybe we can use the same framework to do a few key things for our country. And once we do them, people will move away from defining truth about being whatever they want, and make truth be about how we help each other. That is what I hope the movie helps make real, among other things.
HollywoodChicago.com: Brian, what do you fear most about death or more importantly what don’t you fear as a lesson to all of us?
Wallach: What I fear most is not being here to watch my daughters grow up and have the time with Sandra to do more amazing things. On the other hand, I fear death a lot less than I used to, because as was once written, a person dies two times … the day that their body expires and the last day somebody mentions their name.
And for me I know that if my journey ends tomorrow my hope is I will have inspired people to keep dreaming and I will have given them the tools to make good trouble and to change the world. And that is all I can ask for.
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By PATRICK McDONALD |
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