By Amy Kaufman
"You always think, wouldn’t it be so wonderful to lay around and have someone bring you food and not have to do anything? No, it’s terrible" — Jennifer Brea
Jennifer Brea was a PhD candidate at Harvard University when her mind started to fail her. At age 28, she was already an accomplished academic, a graduate of Princeton who’d moved to Massachusetts to delve into the world of political economy and statistics.
But in the midst of her studies, she got sick. At first, she didn’t think anything of the illness — it just seemed like a particularly bad case of the flu, one that came with a 104-degree fever. And yet long after the fever broke, she still felt like her brain was misfiring. She’d write one sentence of an e-mail and then pass out for four hours. When she’d try to work on a paper, all the words would come out in the wrong order. She felt like she’d lost her grasp of the English language, substituting the word “hope” for something arbitrary, like “rake.”
She went to a number of doctors, but none was able to get to the bottom of her mysterious condition. One told her she had conversion disorder, a psychiatric illness that stems from a hidden trauma and was commonly referred to as “hysteria” in the late 19th century.
But Brea knew something more was going on. So the next time she fell to the ground in her home, unable to speak or move her head, she took out her iPhone and filmed herself. At her next doctor’s appointment, when the medical professional suggested she might have an inner ear infection or severe dehydration, she showed him the footage.
“The expression on his face was like, ‘Oh, my God,’” recalled Brea, now 35. “Suddenly, he went from ‘Drink more water’ to ‘Let’s go get a spinal tap.’ It gave me a sense that my story could only be told visually.”
In 2012 — a year and a half after that high fever — Brea finally got a diagnosis: myalgic encephalomyelitis, or chronic fatigue syndrome. Though the neuroimmune condition affects more than 1 million Americans, it is largely misunderstood by both the public and the medical community.
Indeed, the illness consists of far more than just a proclivity for napping; patients experience something called post-exertional malaise, which means that if they exert even the smallest amount of energy, they are struck down with debilitating mental and physical fatigue. There is no cure, and only about $6 million in public research funding is devoted to the condition annually.
Which is why Brea made Unrest, a documentary about her battle with ME/CFS that will be shown on PBS in January. While the film serves as a medical explainer, it’s also a love story, following the relationship between Brea and her husband, Omar Wasow. When the couple met, Wasow was also working toward his PhD at Harvard. Eleven years older than Brea, he had already built up an impressive resume, serving as a technology reporter on NBC and even helping to teach Oprah Winfrey how to use the Internet on her talk show.
They were both intellectually curious, and in the first year of their courtship, they travelled around the world exploring foreign countries. By the time they married in 2012 — the ceremony was led by their Harvard professor Henry Louis Gates Jr. — Brea was sick, but neither was aware how serious her condition was. They could still go on bike rides together, but Brea would do six miles instead of the usual 12.
As her illness worsened, Wasow became Brea’s full-time caretaker. At first, he was frustrated: “What do you mean you can’t get up and help with some mundane thing around the house?” he’d think.
“One of the most unsettling moments in our marriage was after I had just read this book that said it was all in her head,” said Wasow, 46. “At a certain point, I just had to trust her. Because even years into this, I’m like, ‘Wait, this doesn’t make sense to me.’ She’ll have a reaction to something in the air and I don’t have that reaction, so it’s sort of discordant. But what I believe is that she’s a credible advocate of what’s going on in her own body.”
The couple were sitting next to each other in their apartment building in Glendale this winter, just a few weeks after moving cross-country. They had decided to settle in Los Angeles because Brea’s immune system is particularly sensitive to mold, and the dry air in the West makes her feel better. Wasow, meanwhile, is working as a professor in the department of politics at Princeton, so he can be in California only roughly every two weeks.
Wasow and Brea can be more independent now — she’s on two antiviral medications that have greatly improved her day-to-day function.
But as Unrest shows, in the early days of Brea’s illness, she was forced to be incredibly reliant on Wasow.
In one scene, the couple attend a Princeton reunion parade. Though Brea is in a wheelchair, she’s having a great time cheering on alumni, decked out in her school colours. But as the event marches on, she begins to feel ill, and the two must leave the parade. Back at their home, she is so sick that she cannot walk up the stairs. Wasow tries to carry her, but it is so painful to be touched that she pushes him away, sobbing, in the fetal position on their porch.
“I can’t be anybody’s mom like this,” she cries to him later in the movie. “I can’t be anybody’s wife like this. I am nothing. I can’t give you anything.”
“You’re my wife,” Wasow replies through his own tears. “And you bring joy into my life every day.”
Filming moments like this, of course, was not easy. Sometimes, Brea would request Wasow film her desperately trying to crawl up the stairs when he just wanted to help her. And before Brea raised $212,000 on Kickstarter — she’d later secure additional funding for Unrest through the Sundance Institute — she was working such long days interviewing other doctors and patients that Wasow actually worried the film was making her sicker.
“It was like, if we do this shoot, it helps her feel alive in a moment where it’s hard to find some meaning each day,” he said. “And if we do this shoot, it might actually cost her, her life. That was an impossible calculus.”
“I can’t tell you how helpless it feels to not be able to move and cry for help,” Brea added. “Those are the moments where you turn on the camera, because on top of everything, if this moment is unseen, this is just stupid, useless pain and it has no meaning. I needed that so badly in that moment that I was willing to take a lot of risks in terms of my own safety, but at the same time, I don’t know if I would have survived it had I not been shooting.”
Eventually, Brea figured out a way to actually make the movie from her bed, using her iPad to create her own version of Errol Morris’ Interrotron that allowed her to interview subjects from afar. With her grant money, she could hire production crews to travel in her stead, often monitoring shots via live stream. Still, she pushed herself when she felt able, traveling to Park City, Utah, to work on the movie with Sundance fellows.
“We were particularly concerned about her coming up a mountain in Utah because we didn’t want to make her work or exacerbate her condition,” said Tabitha Jackson, director of the documentary film programme at Sundance.
“But the purity of the air was actually restorative. There was a financing session where she was lying on the floor resting, but that was a sign of her dedication and commitment. She actually didn’t need any help, she just needed to be given the ability to be a creative person instead of an ill person.”
Working on Unrest, Brea said, has helped her feel like herself again. Thanks to her new drug regimen, her mental capacity has returned, even though she still has days when she physically can’t get out of bed. She no longer feels grief for herself, but she does for Wasow and his career, which she feels has been hampered by her ME/CFS.
“Clearly, there have been trade-offs,” Wasow acknowledged. “I have peers who graduated about the same time as I did from graduate school who are further along in their careers and have published more work. There are moments where I’m sort of benchmarking myself against colleagues and feeling like I wish I was more productive, and at the same time, I’m doing work I’m really proud of. I’m thrilled by the intellectual work I’m doing, and I’m also really happy to be on this adventure with you, so we’ll make it work. We’ll make it work.”
“You always think, wouldn’t it be so wonderful to lay around and have someone bring you food and not have to do anything? No, it’s terrible,” Brea said. “Such a big part of being human is being able to give to the person you love and take care of them to support them. That’s been hard for me — how am I Omar’s wife if I can’t give him these basic things? And one of the things he always says to me is that we both just feel profoundly lucky, because each of us is not right for most people, but we are so right for each other.”
“I’m an odd duck, but I’m her odd duck,” Wasow said, smiling. “It’s like two broken people together can be whole.” — Los Angeles Times/TNS
The illness consists of far more than just a proclivity for napping; patients experience something called post-exertional malaise, which means that if they exert even the smallest amount of energy, they are struck down with debilitating mental and physical fatigue
RESTING IN UNREST: Jennifer Brea and Omar Wasow in a scene from the documentary Unrest.
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