The documentarian and her partner discusses Chronic Fatigue Syndrome and her latest film Unrest detailing her fight to overcome the disease.
Director Jennifer Brea and Professor Omar Wasow
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Tavis: Jennifer Brea was an active Harvard PhD student about to marry the love of her life when she was struck down by a mysterious fever that left her bedridden. She chronicles her fight to overcome what is commonly known as chronic fatigue syndrome in the documentary, “Unrest”.
The film opens in select cities this week. I’m honored to welcome Jennifer and her husband, my longtime friend and Princeton professor, Omar Wasow, to this program. Before our conversation begins, first a clip from the documentary, “Unrest”.
Tavis: Jennifer, take me back to that day and tell me more about what happened.
Jennifer Brea: So we had been traveling together and I came back and had a really high fever. I thought it was just the flu. I had missed it before, so I expected I would get better. And when my fever broke, I was so dizzy when I tried to get up out of bed, I would walk into doorframes.
And then I started to — I got better and that whole first year, I would get infection after infection after infection and, every time I went to the doctor, he would run his tests. And because they all came back normal, he told me that I wasn’t sick and everything was fine, even though I was going down, down, down, down.
It was only when I became bedridden that I started to be referred to specialists, and I was eventually diagnosed with conversion disorder which is a sort of modern-day term for hysteria. They told me that it was all in my head.
Tavis: When they are telling you that it’s all in your head, but you’re feeling it all over your body, how do you juxtapose what they’re saying with what you’re feeling?
Brea: It was really hard. I mean, the funny thing is that I was a PhD student at Harvard, so sort of thought, well, I can’t just dismiss what the doctor is saying. I have to go and gather more evidence and kind of try it out for myself. So I walked home from my neurologist’s office that day just kind, you know, noticing the pain in my legs, feeling how hard it was to walk.
But I kept thinking, well, maybe this isn’t real because you’re telling me the symptoms are real, but they have no biological cause. So I walked home and, by the time I got home, I collapsed. It was the last fever I ever had and then I was in bed for four months.
Tavis: How do you respond — I’m talking to you, not a studio full of physicians who say there’s no biological connection to it — how do you respond to people who look at you and say like those doctors said, “Jennifer, it’s all in your head and it’s that it’s mind over matter?”
Brea: Well, I think that’s something we want to believe. I think, you know, I’m sitting here in this chair and my legs are up because when I put my feet on the floor, all the blood would kind of pool at the bottom of my feet because I also have a condition called POTS, postural orthostatic tachycardia, which basically means…
Tavis: Easy for you to say [laugh].
Brea: I know. It took years of practice, but POTS. Basically, I have a hard time — my heart has a hard time pumping the blood up to my brain. You know, I think for me, what I would say first is there’s a lot of evidence. There’s reams of science showing, you know, abnormalities and brain imaging, the immune system and the mitochondria patients living with chronic fatigue syndrome.
But it takes a very long time for the scientific evidence to be translated into clinical practice. I think doctors are given these tools. They have a test that they have and it’s very hard when a patient comes in with a set of symptoms that a doctor hasn’t been trained how to recognize when they were in medical school.
And when the tests come back normal, they have to try to understand that gap between what they’re seeing “objectively” and what the patient is telling them. I think that’s the thing that’s very hard for physicians to do.
Tavis: So you’re not bedridden today. Obviously, you’re out of the house. You’re looking gorgeous. You’re sitting on the couch with your husband, so something is working. So give me some sense of the journey you’ve been on to at least get to this point. And on a scale of 1 to 10, where you say you are in terms of your strength and capability.
Brea: So I think I’m about a four, which might be misleading. It’s the magic of makeup and also that, you know, I’ve recovered a lot of my cognitive function. You know, if I were to walk more than 50 or 100 feet, I would probably collapse on the floor. So it’s misleading. I use a wheelchair whenever I’m out of my house, but I can do a lot of the work that I love again because I have regained some of that brain function.
But I still have these little subtle deficits, so I haven’t read a book in like six years. I used to be a voracious reader, so I would never be able to go back and do the kind of research work I was doing. That’s why I’m now on this new path of filmmaking and kind of visual storytelling.
But, you know, I think what I would say is that — and this is sort of part of the mission that I’m on — is that there’s so much that science doesn’t yet understand. We know a small fraction of what there is to know. We don’t know the cause of diseases, let alone how to treat them. So I think we have to listen more to what patients tell us.
Tavis: They say, Omar, that love conquers all things. I’m not saying this because you’re here and because we’re friends. I’m saying it because I know this to be true. I know people who have been married or been together and something traumatic happens and the marriage just doesn’t survive it.
In particularly and especially your case, because this happened just a few months after you got married, you could have said, “I love you, sweetie, but this is not what I signed up for and I really don’t want to spend the rest of my life, since we just into this, having to endure this for however long it might take.” So talk to me about this notion that we hear, but that we see in practice in your life that love does conquer all things.
Omar Wasow: Well, you know, part of what makes us work is that we just feel incredibly lucky to have each other. I mean, as Jenn sometimes says, “We’re almost irreplaceable to each other.” So there were definitely moments where, as she was getting sicker and in some ways she was losing her personality and I felt her almost like fading before my eyes, that it was scary.
But I also am somebody who is deeply optimistic and just had this sense that we were going to be able to figure this out. We were people who kind of had an adventurous spirit and this was going to be a new challenge for us and we were going to figure it out. It’s been really hard, but we bit by bit have made progress and have been able to kind of steel each other so that, if my optimism wanes a little, she’s able to back me up and vice versa.
So I wouldn’t necessarily say love conquers all, but it absolutely has been a bedrock that has carried us through some really tough times and strengthened our bond. I mean, as hard as this has been, we’re closer together now than we were when it started.
Tavis: What’s the line in the song, “How do you lose yourself to someone and never lose your own way”? We’ve known each other for years, as I said.
And before I became Tavis Smiley, whatever that means, you were there supporting my dreams and we were partners on a number of things and you founded blackplanet.com. So I’ve known you as an entrepreneur. You went on to get your PhD. Of course, that’s when you guys met. How have you looked after her and not lose your own way?
Wasow: Yeah. That’s been hard, that’s been hard. I mean, being a caregiver is really demanding at the level when she was at her sickest. I suddenly had this newfound appreciation of a kind of mom super power where it was like — as a kid, these meals just appear, you know [laugh]?
Suddenly I have to plan meals and I have to have like get the medicine ready, so it’s like that takes work and being a professor is really demanding too. So I was pushed to my limit, but I feel like my heart is bigger for this experience.
There are moments where, I don’t know, I’m listening to experiences of people coming back from — who are soldiers and their wives talking about caring for them. I just have this deep empathy for that experience. And I’m grateful to have a bigger heart. You know, it’s not the journey we imagined for ourselves, but it’s one that has enriched us and for which, as hard as it’s been, there’s a lot to be grateful for.
Tavis: I suspect — and I could be wrong. You tell me if I am, Jenn — I suspect there are times when you have certainly felt sorry for yourself, but help me understand how you handle perhaps feeling sorry for Omar that you got him in this mess, that he has to look after you and babysit you and feed you and medicate you.
In your own head, you know he didn’t sign up for this. I mean, I’m rambling here because I want to be gentle. You see what I’m getting at here?
Brea: I do. I would say that neither of us signed up for this, but I almost never feel sorry for myself. I think a lot of the grief I feel really is for him because I love him so much. And the worst feeling in the world, I think, is feeling like you’re hurting the person you love most.
So even though I know that this is something that happened to me and my body and it happened to us, that we didn’t choose, that I didn’t choose. I still can’t help but feel like my illness is jeopardizing his dreams as well as my own. So before we got married, I first fell ill. I didn’t have a diagnosis, but I knew something was seriously wrong before we’d actually gotten married. We were engaged.
I said many, many times to him you don’t have to do this. Like when you asked me to marry you, we were signing up a vision of our life that was traveling the world and having fun, being free and having a family and all of that. So you don’t have to sign up to do this. And he said to me, you know, are you kidding [laugh]?
I waited my whole life basically and we really have waited our whole lives for each other, so there is the sense of I am getting better. It’s really slow, but I improve year over year through treatment, through drugs that have helped, and it’s slow.
But regardless, we’ve kind of learned that what matters is what you have together. Even though our lives are smaller in some ways, they’re also much richer, much more meaningful. Which is not just say that I don’t want to get better tomorrow or that I wished this, but that I feel like there have been surprising things that have come out of it.
You know, make the film and be an artist and then for us both to be on this mission together to help bring to light this community that I’m a part of, people who’ve been sick for so long and often don’t have a voice and aren’t well enough to show up in person.
Tavis: Let me ask this as the exit question and I’ll ask it of both of ya’ll. I’ll let you go first, Jennifer, and Omar can wrap this up, I guess. Is having a family out of the question, given what’s happened here, number one?
And number two, if this is it, if it never gets better than what it is right now, your condition, the situation, if this is it, can you take it to check out or can you be happy for the rest of your life if this is it?
Brea: You know, I think it’s not a matter of questioning. We will find a way to have a family in some way, and people do. People with disabilities, people with chronic health conditions, have families, so we’re gonna find a way. It’s probably going to be different from what we expected, but we’re going to do it.
I know Omar’s going to be a great dad and I can’t wait to be a mom. And if this is all it is, I mean, it’s incredible. Every day I wake up and I get to be with him and I couldn’t ask for anything more in my life, truly.
Tavis: Mr. Wasow?
Wasow: I knew when I married — before I heard her speak, I read a column she had written and was like sparked by the voice I saw in this article. So I knew from early on that this person who I was smitten with was like creative and was going to like bring things into the world and that was like part of the journey I was signing up for was to like help her manifest her vision and art.
I thought I was marrying a writer. She became a filmmaker and it’s like this, for me, kind of awe-inspiring film. It wasn’t what I signed up for in the sense that I had no idea how that would play out.
But what a gift to be a part of something that is both for us, like a constant source of joy each day, but also in the kind of individual projects like this film, something that is doing work in the world, helping people feel seen who have otherwise felt invisible. So it is a sense of mission about the work and about our lives together, which is so fulfilling.
Tavis: We should all be so lucky. The film is called “Unrest”, Jennifer and Omar’s story thankfully ongoing. An honor to have you both here. Congrats on the project.
Brea: Thank you.
Wasow: Thank you.
Tavis: My delight to have you here. Up next, musicians Chuck D and Tom Morello. Stay with us.
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