ME - A Perspective

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Status: Finished  |  Genre: Non-Fiction  |  House: Booksie Classic


“Community”, is a word that is derived from a latin word, which means common. The word, which literally is common, could also be the force that defines one’s action, by their underlying well defined nature that identifies themselves with the group, with the community. Often observed through geographical, religious or political lenses, those can also be the factors that can obscure one's identity. Archeology, which deals with the thorough inspection and analysis of the remains, material cultures of the past to derive the underlying human activities of the historic and prehistoric period, simply called a community as people who socially interacted, which for obvious reasons were conditioned to physical distance.  Ecology on the other hand, defines it as an environment in which interactions take place between and among species, both biotic and abiotic. A community starts with an individual’s virtue to bring a change, a change which forms an emotional connection as its gluing agent by binding more people together for the cause. A French aristocrat, de Tocqueville describes, Tolerance, reciprocity and trust should be the important habits of the heart for an individual’s involvement in community. This is the story of a woman, in whose life, the three habits became her belief system, and the guiding principle for millions more. A woman whose recovering story, as painful as it may be to hear, entails hope in the end, Jennifer Brea. 

 

Though she is described as a filmmaker, it is a path that she was led to, and not the one she had chosen, when she was doing her Ph.D in Harvard in 2012. She had graduated from Princeton University with an AB in Politics and later worked as a freelance journalist in China, Eastern and Southern Africa. She wanted to be a Social Scientist. Ever since her childhood, Jennifer would dream big and she believed if she dreamed big enough, anything was possible. Jennifer met the love of her life, Omar Wasow during her Ph.D studies and they got married in 2012. Omar Wasow was a Harvard graduate who was the creator of “BlackPlanet,” one of the first major social networking sites. Same year of their marriage, Jennifer fell ill with 104.7 degree fever. The illness was met with severe fatigue. She felt that she had a broken battery that would charge to only 5 or 10%, and if it went past the limit, she’d crash, making her completely immobile. On consultation with the doctor, she was told that it was just dehydration and she needed to rest more. Then in ten days, she was bedridden and couldn’t even make it to the bathroom on her own. Soon she consulted all sorts of specialists, from infectious disease doctor to dermatologist to endocrinologists to cardiologists. No one had an answer with her lab reports indicating the same. Then when she consulted a neurologist, she was told to be having Conversion Disorder, which was caused by some emotional trauma, hidden deep inside her subconscious. So, with different doctors giving different certainty, Jennifer was told, it was all in her head.

Over time the lights were sensed to be too bright, the faintest of sounds, be it someone walking in the next room or even rustling of sheets caused Jennifer excruciating pain, as if everything inside her mind was swelling. Even when it was not that, Jennifer felt that she had died, but had been forced to watch, as the world moved on, questioning the very nature of why she even existed or why was she even born in the first place. The days went by, with no diagnosis, she had to become her own doctor. So, she went online and to her surprise found that she was not alone, there were many more across the globe, who had the same symptoms. From them Jennifer learnt that they were diagnosed by the Chronic Fatigue Syndrome (CFS) or Myalgic Encephalomyelitis (ME). With the syndrome being more susceptible in women (one in four), in history ME was many things. Greeks and Romans thought it was due to sexual deprivation, and the solution to it was marriage, followed by motherhood. Even the famous neurologist, Sigmund Freud deemed it to be the outburst of physical symptoms that caused too painful memories that the conscious couldn’t handle. Jennifer in 2012, when all of it had started, was told the same by her Neurologist. Her neurologist had just termed it as Conversion Disorder, which was the renamed(1989) version of Hysteria. But with discovering people who had ME, Jennifer met all the criteria for ME and later confirmed the same with corresponding lab tests. Along with discovering what she was diagnosed with, Jennifer discovered people who had the same, and each belonged to the spectrum which had on one end, people being bedridden (one in four) for years together with cases where people just knew they had grown tall and had never been to able to stand and witness it, and on the other, people being able to go work, who probably had to lie down on the weekends to recover. Many of them kept their mind sane, by travelling virtually out in the world, with mind guiding and narrating all the way through.

Jennifer, from the beginning of her symptoms, had been documenting herself, so as to educate others and not be harmed by disbelief and ignored. But then with thousands joining the hands, she started documenting their lives, the impacts it had on them, the way they are coping with it and hoping for something to happen. Upon few recommendations, who happened to have been cured by home remedies, Jennifer tried various tricks spanning from going vegan to bringing balance in acid and alkaline intake, from mold avoidance to antivirals. She even tried Magnesium injection. As a part of it, she even stepped out of the house, to go to a distant dry place. All of which toned down the severity of the illness, but leaving her uncured. The documentary, captured through the camera and phones, directed by Jennifer from her bed, doesn’t just capture images, captures perspective. A perspective that tells us how hard it can be to walk in their shoes. With a range of 15 to 30 million affected all over the globe and although twice as common as MS (Multiple Sclerosis), ME was least funded by the government and the Institutes showed least interest as it was not part of their medical books and mostly it was considered not real for a long period of time. Concerning that, to raise awareness, both in public and government, in 2018, people gathered with the empty shoes of ME patients, and placed it on the ground with messages on them. Few messages read, missing the joy of dancing, missing playing drums in rock band, these shoes were made to walk, missing the twenties that I expected to have, missing any kind of life without pain, missing sense of former self, living independently. The hashtag of the movement was, #MillionsMissing. This took place in 100 cities all over the world, including few metropolitan cities such as, Washington DC, Los Angeles, New York, London, Liverpool, Melbourne, Boston, Sydney, Dublin, Tokyo and many more. Though people were distant, they represented thousands of told-stories in the documented film “Unrest”, and thousands more of untold-stories, with a single idea delivering the purpose of the community. 

In the current days and even in the current minute, Jennifer Brea, continues her battle, ever so stronger with her community and her supportive husband, who has been a constant factor in her journey. Universities all over the globe in Japan, US, England, Norway and many more have been intensely working in finding the cure. Griffith University in Brisbane Australia holds a core team in the department for National Centre for Neuroimmunology and Emerging Diseases (NCNED), who have made great strides in this regard and with their mission being, “Our research aims to translate our research findings to benefit ME/CFS patients. The core of NCNED values is that patients are our priority”. The year 2020 has not been a great year for many, with either lives taken or lives being stuck, without going forward. This should give us a perspective about the lives of patients with ME, with their lives frozen in the sickness amber. Understanding is said to be more profound than even love, and perspective is its bedrock. It is the factor that gives us the lens to notice what’s important and what’s not. It can be the deciding factor as to what goes into our biography that would later tell stories to our kins and theirs. Abiotic stories that can become a living entity of its communities. In this way one can never die, not just in the eyes of those who have witnessed, but also in the minds of those who have heard the stories. Mother Teresa can be regarded as the epitome of this. Jennifer tells that she probably could have taken her life, if it wasn’t for her community, and in turn it is what keeps her alive now. But now she has faith that she will recover. Faith, which tells everything is going to be alright, is an overwhelming conviction and belief in the higher power, which may be God, Science, Human Goodness, Force of nature, or just a Force, and faith is at its best when you are not alone, but part of a community. Though the story of Jennifer Brea and her community is an untold story for many, it’s the one with an open ending for all and giving us the opportunity to be small part of it, as the medical field is advancing now at a brisk pace in finding the cure, we need to create more and more awareness regarding #MEAction, so that our lives can return to the normal state, where we hold an umbrella for the elderly, while letting the young ones out into the light. 

 

“This illness destroyed my life, but what it showed me, I could never give that back. I want to be well and yet I’m grateful for every inch of my life. I’m still here. I’m still here… “

- Jennifer Brea 

 

PS : Last month on 17, Jennifer had her birthday, where apart from her relentless fight against ME and even in recent times against COVID, she also wished to save The OA. The OA is a show on Netflix, about a young blind woman who returns home after a 7-year disappearance, with her sight restored. Drawing parallels from her own childhood experiences and imaginations, Brit Marling has written this show, with herself as the lead cast. But sadly Netflix cancelled the show after part 2, which ended on a cliffhanger. Jennifer Brea adores the show for its excellence in driving the imagination and dreams towards hope and freedom. So I want you all to watch the trailer and few of its promo, and if its up your ally, do watch, do support. 

 

 

References: Wiki, JenniferBrea, NBC News, IMDb, TED, Griffith University

 


Submitted: October 28, 2020

© Copyright 2020 maheshaudupa. All rights reserved.

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