She is incredibly bright and beautiful, a graduate of Harvard who was about to complete her doctorate at Princeton. She was in love with a brilliant man and the two of them travelled the world together. They made plans to marry, have a family, build their stunning careers together, and then she caught the flu. It was a particularly harsh case with fevers of one hundred four degrees. When she was well once again she felt debilitated, but thought little of the residual effects. She had after all been very ill. She told herself that it would simply take time to regain her energy, but something was very wrong because instead of growing stronger she began to feel more and more weak. There were even times when her mind did not seem to work properly. She was unable to find the proper words to express herself. It was all so frightening.
Eventually her symptoms became so concerning that she sought the expertise of a medical doctor. He insinuated that it was all in her head, diagnosing her with what used to be known as hysteria. He suggested that she was reacting to some deep seated trauma that she most likely was unable to remember. He sent her home with no real explanation for what was happening, and she began to wonder if she was indeed going crazy. That’s when she got an idea.
The next time her symptoms became so severe that she literally collapsed in pain, unable to move or express herself, she asked her husband to film the incident. She took the video to a neurologist who was stunned by what he saw. He eventually told her that she had ME. Myalgic Encephalomyelitis, a strange disease that is thought to afflict ten to fifteen million people worldwide. There is no definitive test for the illness and no cure. The diagnosis is made based on symptoms alone which include excessive fatigue after mental or physical activity, intolerance to exercise, joint and/or muscle pain, memory problems, difficulty walking, sore throats, headaches, flu-like symptoms, sleep disturbance, bowel problems and mood swings.
The disease is also known as chronic fatigue syndrome and affects those who have it along a spectrum from individuals who endure a mild attack and then recover fully, to those who become completely homebound and bed ridden. There is no known cause but the disease appears to follow otherwise fairly typical and minor illnesses like the flu. Some believe that the roots of the problems lie in hormonal or allergy issues, but none of the research has proven any of the theories. It is a greatly misunderstood disease that sometimes results in psychiatric diagnoses rather than physical ones.
The woman whose life was so impacted by ME is Jennifer Brea, and she has a debilitating case of the disease that has radically altered the trajectory of her life. In a fashion keeping with her personality she decided to film her journey along with that of four other victims so that she might shed light on a mostly misunderstood illness. In conjunction with Sundance Films she created the documentary. Unrest, that chronicles her experiences as well those of the four others whose lives have been so radically changed after contracting ME. The film debuted on the PBS program Independent Lens this January and its power to visually explain what happens to those who have ME is emotionally visceral.
Jennifer Brea holds back nothing in her depiction of what ME has done to her and the relationship that she shares with her husband. She honestly expresses the fears and disappointments that plague her as much as the symptoms. She presents a compelling argument for more research by noting that those who are stricken often become like missing persons as they are forced to be hostages to their illness. She tells a compelling story of families broken apart and individuals losing their identities all while the rest of the world remains mostly ignorant of the horrors of this strange condition.
Her own story is one of the love that she and her husband share in spite of the problems that have so changed the way that they once thought they might live. She wants to be able to give him the kind of relationship that she had thought they would have, but instead is continually thwarted by recurrences of the most trying symptoms. Her husband has nobly stood by her, but even his patience is often tried by the confusing nature of his wife’s illness.
Ms. Brea shows a family in Sweden whose child was institutionalized in a psychiatric facility because doctors there were unwilling to accept a diagnosis of ME for her. Brea also introduces us to a woman who had been a happy wife and mother, one who had no idea that she would eventually be confined to bed with her own husband believing that she was just insane rather than physically ill. Her marriage deteriorated and she struggled to survive. When one of her daughters came down with the same disease her world unraveled even more.
The film is so personal, so real that those of us viewing the stories become involved with the characters, particularly Jennifer Brea herself. We watch her gaining strength and find ourselves hoping as much as she and her husband do that she will somehow miraculously improve. We cry with empathy as we become all too familiar with the struggles associated with ME.
Unrest is a touching and important documentary and quite worthy of the accolades that it has received. Hopefully it will also become the impetus for more research into the mysterious illness that it depicts with so much unflinching insight and compassion. At the present time very little is being done to learn how and why this illness affects certain people. There is only a smattering of interest in finding something that will cure those afflicted with its devastating symptoms. It is a grand mystery that shows no signs of being solved while real people suffer from the misunderstandings and lack of knowledge surrounding it. Hopefully Jennifer Brea has opened a door of awareness that will ultimately lead to the studies that will eradicate it or at least lead to more hopeful treatments. Perhaps just by spreading information about ME Unrest will at the very least bring more compassion to those who deal with its tragic effects.
Forty years ago the iconic movie Saturday Night Fever debuted and became not just a an instant hit, but a film classic. I was a twenty nine year old mom with two little girls and a sense that a lifetime of adventures lay ahead of me. I had matured beyond my years not just due to my parental responsibilities, but also because I had helped my mother through two difficult mental breakdowns and had watched helplessly as my husband endured chemotherapy to combat a life threatening disease. Still I was young at heart and ecstatic when my mother suggested that we go see the movie together. I knew that it was not the kind of fare that my husband would enjoy, so I was happy to have a companion with whom to share the enjoyment of escaping into a world of music and dance for a few hours.
In what has become an anxiously awaited tradition Time magazine selected its Person of the Year last week. Much as has often happened this year’s winner of the cover spot was a group of women known as the “Silence Breakers.” In bold moves that have toppled the reputations and careers of a host of powerful men, women both famous and unknown have stepped forward to reveal acts of sexual harassment and violence long hidden from the public eye. In a veritable deluge of accusations the stories have dominated the news cycle for weeks and pointed to a societal problem that has generally been unspoken but well known. The tales of mistreatment have included men of all stripes and have initiated a national dialogue that heretofore existed mostly in the shadows.Many wonder how and why so many women are suddenly speaking of incidents that they kept secret for decades. Particularly among doubters there are questions about why it took so long for them to reveal what happened to them and what has made the present time so different that the #metoo movement that has gone viral.
Growing up with a single mom in an era when such situations were quite rare gave me a different point of view than many of my contemporaries. I was raised to believe that I was capable of accomplishing anything that I chose to do. My mom was liberated out of necessity and she was a feminist out of choice. She was also as American as apple pie, someone who cherished freedoms and served no masters other than her God. She never wanted me to clean houses or wait on tables. While she saw such jobs as honorable work, she often noted that her own mother had done such things in order to lift up her children, and it should not be our fate to be at the beck and call of either the wealthy or the powerful. She believed that we were as worthy as any other humans and that we must never bow down in submission to anyone, not even a queen or a king or a president. I suspect that she would have enjoyed seeing the Obama family approaching Queen Elizabeth on equal footing. She truly saw the United States as a place where each man or woman had the potential to rise into the higher echelons of power. She viewed education and the use of intellect as the most direct pathway to individual success, but she never pushed me or my brothers one way or another. Part of our liberty lay in the ability to make our own choices. 