The film “Unrest” will debut on Independent Lens this week (check your local listings — in the DC area it will air on Jan. 12 at 10:30pm on WETA). I couldn’t wait and bought my own digital copy on Amazon. Let me just say: It’s no surprise that it’s on the short list for an Academy Award.
The opening scene made me laugh out loud and then gasp in recognition: two people are trying to drive to Princeton Hospital and the GPS keeps directing them to Princeton Animal Hospital, as if it can’t believe these outwardly healthy-sounding humans need medical care. Then, there they are at the emergency room. The paint colors and art on the walls are unmistakably familiar. This is the hospital where my dad was treated off and on for the last three months of his life and I know it well.
What is also familiar, to me at least, are the essentials of the story — a mysterious illness, a feeling of isolation, and then connection to others who share the same condition thanks to the internet. What’s new is the intimacy and skill with which filmmaker Jennifer Brea uses the tools of modern communications technology to share her daily struggle and that of other people around the world who are living, as she is, with myalgic encephalomyelitis (aka chronic fatigue syndrome).
I was also struck by the universality of the depictions of marriage, parenthood, and love. Relationships are strained to the breaking point when one person is sick, but joy can be conjured, commitment can be preserved, passion can be sparked. Just because a woman can’t leave her bed doesn’t mean she can’t mother her children. Parents tenderly care for their stricken children, even under nightmarish conditions. And oh, to have a dance with your lover outside on a warm night like Brea and her husband share, just for a moment, just before she has to lay down on the grass in exhaustion. We live for those moments. It’s just that some people are lucky enough to keep dancing.
When I was doing my research into how people living with rare conditions use the internet, I interviewed a woman who was diagnosed with Marfan syndrome at birth, in 1945. Her grandfather was a physician and recognized the sometimes striking symptoms of this genetic disorder. Her extremities were visibly longer than normal, she was double-jointed, and the lenses of her eyes were dislocated. She was the first known case from either side of her family tree and her parents had no peer group to guide them. She asked that her name not be used, so I’ll call her Peggy.
“It must have been a very powerful, wrenching experience for them,” Peggy recalled, describing their early life as a family and her experience as a sight-impaired toddler. “I remember being 2, 3, 4 years old, going for walks with my dad. He’d point and say, ‘Look at the birdie, Peggy, look at the birdie.’ But I could never see the birdie. I became accustomed to the tone in his voice. It sounded like anger. I got used to saying, ‘Yes, I see the birdie,’ even though I couldn’t.”
Peggy paused at this point in her storytelling, then added, “I’ve made a study of the adaptations humans make for the price of love. My parents were loving, but ill-equipped. I did my best and they did their best.”
Peggy said she overcame many of her challenges thanks to sheer will and a rich faith in God. She could take no comfort in finding other kids who look like she does, so instead she turned inward. She said that even today doctors can’t believe how she can see at all, given the deformity of her eyes.
Nowadays the National Marfan Foundation maintains a photo collection on Flickr entitled “What Does Marfan Syndrome Look Like?” and holds events all around the country so people can meet in person.
Peggy talked to me about how life is a spiral, giving you perspective on long-ago events as they spin past you over and over. When she became a mother, she understood how frightening it must have been for her parents to have a baby with Marfan syndrome – both of Peggy’s own children have it.
When she watched her children transition to adulthood, struggling in their 20s to figure out who they were going to turn out to be, she looked back at the same period in her parents’ lives and saw their struggles in a new light.
These are hard-won life lessons and Peggy is fiercely proud of them. When I told her that I felt envy as I listened to her story of spiritual strength, she said, “Yes, that’s what I want you to write about. People should not feel sorry for us, they should feel jealous.” And that is what I felt when watching “Unrest” — an odd reaction, but it’s true. I was lifted up and inspired by this film, just as I was lifted up and inspired by talking with Peggy, hearing about the adaptations people make for the price of love.
Today, people who feel alone can go online and begin to understand the limitations and possibilities of their condition. They can nurture their own or their child’s health and spirit, learning from other people who have survived and even thrived. They can organize, command attention, and demand justice, if necessary. And the rest of us can follow their lead, when we need the same fellowship.
Treat yourself. Watch “Unrest.” And please come back to let me know what you think in the comments below.
“Peggy”‘s comment, ” “Yes, that’s what I want you to write about. People should not feel sorry for us, they should feel jealous” is the perfect comment for our times. I think it touches directly most of what ails the US society.
The unbearable need for standardization of almost everything in the life of people, which has brought:
* this horrible culture of clearly visible branded clothing, as if the brand was the important part of the clothing,
* most American towns looking just like the next one, with the dramatic disappearing of small businesses across the country, leaving most towns with only a few industrial fast food shops.
* people talking the same language, using just a few memes and the same reasons for what’s going right and wrong.
I could, of course, go on and on for hours describing how standardization has killed the American great move forward that took place last century and which was often based on people thinking totally out of the box. Now, people want to communicate only with those who think or look like them. Yikes!
Back to Peggy’s comments. It’s quite obvious that as people have learned to like only those who look and behave like them they have developed an almost total inability to accept all human beings, regardless of what they look like or speak like. The awful racism that has manifested itself so strongly in the last 2 years is another manifestation of the same issue. I am very pessimistic about the ability of the US culture to reverse course.
20 years of FoxNews have done a tremendous and long-lasting damage and are responsible for the destructive profound fracture we witness everyday. “#MeFirst” is a much stronger meme than #MeToo. The discussions over what kind of medical coverage, if any, people should, and now over immigration have demonstrated beyond any doubt that, for many Republicans, #MeFirst is the only way to go. And you can’t have a successful society if a significant minority, or at times a small majority, believe that #MeFirst is the way to go.
Last year, in a small Colombian town, I talked to a man that was apparently really poor. The conversation veered to what kind of differences I have noticed between rich and poor countries and then I asked him what it feels like to be poor in Colombia. The man, in 2 sentences, gave one of the most important lessons in my life, when he said, nicely, “Don’t make a mistake! I am not poor at all, I just don’t have money.” He said it without any malice, with a huge smile and I instantly believed him, since that man was obviously much happier than most Americans who have to deal with the real hardships that come with the contemporary American society.
Peggy also said “I’ve made a study of the adaptations humans make for the price of love. My parents were loving, but ill-equipped. I did my best and they did their best.”
The Colombian culture, at least what people call the Cultura Paisa (this is a very old farming area, the heart of the coffee-growing region) is a culture of deep respect for humans, where the South American version of Catholicism has produced a surprisingly undogmatic society which accepts people the way they are. Here there is no need for internet communities since everyone supports you and the family structure is ALL important. When you go to medical offices or hospitals you’ll almost never see an old person carried around by a nurse. One or more family member will be with the patient, talking, loving, doing the things that Americans have too often lost in their deadly all-important pursuit of money and “success”.