Unrest

omar-jen-wheelchair-woodsShe 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.

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