Documentary on Myeloproliferative Neoplasms (MPNs) [transcript] [audio]

Guest: Cynthia Wade  

Presenter: Neal Howard

Guest Bio: Director Cynthia Wade won an Academy Award® in 2008 and was nominated for her second Academy Award® in 2013. She’s won festival awards all over the world, include two awards at Sundance, three awards at Palm Springs, and prizes in Aspen and the Hamptons film festivals, as well as film awards in Spain, Italy, Argentina and Belgium. She directs films for clients such as HBO, Cinemax, Sundance Channel, IFC Channel, and PBS. Her commercial clients include Dove, Hershey, Proctor & Gamble, Kimberly-Clark, Sesame Street, Pfizer, Bristol-Myers Squibb, Sanofi, Salix, Shire, the National Guard and Phoenix Children’s Hospital.

Segment Overview: Award winning director Cynthia Wade talks about her new documentary, featuring patient Barbara Abernathy, on the challenges people face living with rare, chronic, progressive blood cancers known as Myeloproliferative Neoplasms (or MPNs) and why she is focused on bringing this story to light.  Voices of MPN

Transcript – MPN Documentary

Neal Howard: Welcome to Health Professional Radio. I’m your host Neal Howard. Thank you so much for joining us today. Our guest is Award-winning Director, Cynthia Wade and she’s joining us here on the program to talk about her new documentary that features patient, Barbara Abernathy on the challenges that people face living with rare chronic blood cancers that are known as MPNs or Myeloproliferative Neoplasms. She’s also going to tell us why she is focused on bringing light to this particular story. Thank you for joining us today Cynthia.

Cynthia Wade: Thank you so much.

N: Well, give our listeners a brief background about yourself. I did say that you are an award-winning director.

C: Sure. My name is Cynthia Wade and I am primarily a documentary film director. Although I have produced fiction films and I also direct television commercials from time to time, usually focused on real people, I’ve always been interested in real people stories. I always feel like there are so many amazing unsung heroes out there everyday and uncovered stories that really should be brought to light of just regular average people doing really extraordinary things even if they feel like they’re not doing extraordinary things. So in the case of making a film about Barbara, it was a real opportunity to do what I love which is to create a narrative and to create essentially, a short story about somebody who, I think in some ways Barbara sees herself as a very ordinary person and of course, if you see the film and if you know Barbara, she’s rather extraordinary and deserves the film.

N: Would you say that the commonality of having something in common with just regular folks is the key to make a captivating documentary film or is it the substance of what’s going on with that person or the person themselves?

C: I think both. Number one, you want to be able to find a story that really hasn’t been told or is in underrepresented story, something that really hasn’t been fully brought to light. And so in the case of rare blood cancer and MPNs, I hadn’t heard MPNs prior to embarking on this project. The wonderful thing about being a documentary film-maker is that you dive in very deep, very quickly and parachute into a completely different world and connect with people in a very deep level and really, you’re changed by the end of the process and that’s a really a gift. I think though also in terms of the story, there always should be something at stake whether you’re watching a documentary or a fiction film. There should always be something at stake for the audience and certainly in the case of living with a rare blood cancer, clearly, there’s something at stake.

N: What makes this particular rare blood cancer so interesting to you as the focal point of your film?

C: Well, it talks in the film about that sometimes you need to really re-choose your life to just taking your life one breath at a time. And I think that no matter where you are or what your health is in like, it’s a really great reminder for all of us that sometimes when things are tough, when they’re challenging, to just say, “Okay. This moment, what I need to do is just capture this moment one breath at a time.”. And so I think for a general audience, that’s a great message. Certainly for MPN patients for their caregivers, for their friends, family, it’s also a really positive message and it really encourages people to feel less alone and could encourage people to be more connected to their family members and to start conversations with their loved ones and with their doctors.

N: How much the film offers actual information about finding support maybe online or maybe in real world to get some of the support that obviously is needed in such an underrecognized rare blood disease?

C: So my focus is always the emotional storytelling and that’s really where I live. And so when I made this film, when you see the film, when somebody sees the film, it’s incredibly raw and it’s very emotional. What I did with the interview is that Barbara is looking directly into the land and what she saw was not the land, what she saw was me. So it became very intense relationship and conversation between me and Barbara. You don’t see me but because you’re looking directly into the lens, she’s really looking into the eyes and souls of the audience members who could be watching this online. And that was deliberate. It’s a deliberate style of storytelling so that people can really feel flip-out an insight of her story. And what I want to do as much as possible is capture the essence, the emotional essence of somebody’s story. Largely, the film will be sitting on a website, voicesofmpn.com and so there’s lots of information there. But my goal and job as a documentary filmmaker is always to tell the personal and emotional story first.

N: So you knew nothing about MPNs prior to undertaking this project. Describe how you’ve been changed? How the people who you feature in your documentary and some of the other people that you’ve talked with who were teaching you about MPN, how you’ve been changed and how are things different for you now as a filmmaker?

C: That is such a great question. Everytime I finish a film, really anytime I finish I shoot, I feel like there’s a piece of me that breaks off from me and is left behind in the place in which I was shooting. It’s always been my experience. So this piece of me that was left with Barbara and I think that that’s what it always needs to be. I’m asking her and as I asked any documentary subject to really go on a journey of trust with me and it is scary because I’m asking them to put everything aside, look into the camera and really tell their story from the depths of their soul and it’s honestly as possible in this unvarnished-authentic true way. But it’s exhausting, our interview was 3 hours long, the film itself is less than 10 minutes long. I was with her over series of days, you pick the best stuff for the edit obviously. So leaving myself behind, I also take something with me. And so for me, what I took was Barbara’s persistence, Barbara’s strength, the reminder that no matter what to keep going and also for me to stop and pause and really think like sometimes, somebody can be living with a rare blood cancer or with a diagnosis, with a disease and you don’t actually know what’s going on the inside. They may actually appear to be living without any kind of diagnosis on the outside. But you just never know what’s going on the inside and especially in our hectic times to really remember and stop and think. There’s a whole story, there’s a whole narrative, there’s a whole drama behind this person’s outside, respect that whatever that is, remember that that’s there. And so for me, that’s always a good reminder.

N: Now once again, you’ve mentioned voicesofmpn.com. Is that the website where we can go and view this film and get some more information about MPN?

C: Yes. The documentary is at voicesofmpn.com and so Barbara’s film is there. It’s a film called Beyond Blue. It’s about 9 minutes and change. It’s under 10 minutes. It’s like a lovely short story of her life. She gave us so much and I think it’s really gifted to the world, something really special about her story. The documentary is the first in the series of films that I’m directing about folks with MPNs. So I will be getting on the road shortly later this month and we’ll be going into other communities and working with other MPNs patients and caregivers and telling the MPNs stories from their perspective. And so ultimately, the series will reside on that website which is voicesofmpn.com

N: We would love to have you back periodically to give us updates on the series and talk about more of the people that you’ve met and I’m sure, possibly some lifelong relationships with. It’s been a pleasure talking with you today Cynthia. Thank you.

C: Thank you so much.

N: You’ve been listening to Health Professional Radio. I’m your host Neal Howard. Transcripts and audio of the program are available at healthprofessionalradio.com.au and also at hpr.fm. You can subscribe to this podcast on iTunes, listen in and download at SoundCloud and visit our affiliates page at healthprofessionalradio.com.au and also at hpr.fm.

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