'Unrest' - an inspiring film on overcoming ME
The Sundance Film Festival award-winning film 'Unrest', an intimate portrait of filmmaker Jennifer Brea's fight to overcome the disabling disease ME, will debut in UK theatres on the 20th October 2017.
Finding solutions to ME (Myalgic Encephalomyelitis) is close to my heart, having been a sufferer for more than 15 years, and Jennifer (pictured, with her husband Omar) has made a huge contribution to ME being better recognised by the medical profession, as well as spreading awareness throughout the world. It should never be underestimated that to a sufferer, a tiny bit of understanding goes a profoundly long way!
ME is a medical condition characterised by reduced ability to function after exertion. It's also known as Chronic Fatigue Syndrome (CFS) and ost-Viral Fatigue Syndrome (PVFS), and thought by many researchers to be an autoimmune disease. According to current estimates, over 250,000 people in the UK have ME - more than double the number of individuals with HIV or Multiple Sclerosis - but 80% go undiagnosed due to lack of education and awareness.
Unrest portrays the inspiring real-life story of Jen, aged 28, brilliantly talented, working on her PhD at Harvard, and about to marry the love of her life. Having suffered a series of viral infections, Jen becomes so ill she's bedbound, often in excruciating pain. As is so common, Jen finds she is disbelieved by doctors, but determined to live, she starts looking for answers and turns her camera on herself and a hidden world of millions confined to their homes and beds by ME.
Jen began a video diary on her iPhone to convey the seriousness of her symptoms to her doctors. The video diary eventually led her to make Unrest, which received its premiere at Sundance Film Festival 2017, where it was awarded the Special Jury Award for Editing. It has since screened at River Run (Audience Award for Best Documentary Feature), Nashville Film Festival (Grand Jury Award for Best Documentary Feature), and the Sheffield Doc/Fest (Illuminate Award), among others.
Jennifer commented; "I couldn't countenance the prospect of spending the rest of my life in bed. But more than that, I couldn't countenance living in a world where we allowed this to happen. What I saw angered me, and I knew this was a compelling story.
In making the film, I began to uncover the layers of misogyny and assumptions that medicine and society have about female patients being unreliable narrators of their own stories."
The film is a feat of disability filmmaking, made with an international team using innovative technologies, which allowed Jen to 'travel the world' and film as if she was in the room. When shooting began Jen was bedbound 99% of the time, but the global producing team relayed the environment to her, allowing her to see in real time - and direct the film from her bed. A brilliant and talented woman, Jen is an activist for invisible disabilities and chronic illness, co-founded a global advocacy network #MEAction, launched a global day of protest, #MillionsMissing, and is a TED talker. Find out more about Jen and Unrest here.
In the UK, progress has been slow on finding solutions to ME. Having come across them in a seminar, the Optimum Health Clinic in London played a pivotal role in my journey. It was here, many years ago now, I first learnt about the importance of the mind-body connection, and how crucial it was to always focus positively on moving forward to avoid my symptoms becoming 'stuck'. I also came to learn that unless I listened acutely to my body, and recognised the effects everyday factors had on my mind, and therefore my body, I couldn't find a way out of the quicksand that was my illness. Empaths and those with complex and creative minds are believed to be most at risk of developing ME, since they are most susceptible and sensitive to the effects of their environment and experiences. A fiery determination and passionate fight to achieve a desired outcome - while rewarded in most areas of life - only got me in deeper trouble with ME. Acceptance, relaxation, and gentle management were the way forward.
It was explained to me that ME was like becoming stuck in the 'fight or flight' stress response - with devastating effects on the nervous system, immune system and other processes. My own experience meant at times - along with the usual of feeling completely exhausted, like I was running on empty and flu-like - it was hard to even breathe, and I often felt as though my heart, without the energy it needed to function properly, would just stop at any moment (my GP even panicked and sent me to a heart specialist at one point, after routinely listening to it). Of course, I mostly kept it to myself when it was happening in the company of others - sadly, coming across so many disbelievers has that effect - but despite the fear, I would somewhat morbidly console myself I would have the last laugh from the other side if it did, since the shock would no doubt jolt them out of their narrow-minded perspectives!
I learnt that through deep relaxation, the body can dial the stress response down enough to begin to heal at a deep level. It became apparent that Reiki was wonderful for helping achieve this, and after taking my first level and practicing every day, I began to take massive steps forward and never looked back.
After having ME for so long, I had given up hope that I would become one of the recovery stories I heard about along the way. The truth for me is that, while I may never have the energy or lifestyle of the 'average' person, I have recovered so much, learnt a HUGE amount, and realised I just have to live a different kind of life tot he one I'd intended - and that it might actually just be an even more beautiful one than I could ever have imagined.