It’s rare I write about M.E/CFS specific literature, documentaries, or interviews mainly because I haven’t read a book or study that I would recommend. Until now. I’m really excited to talk to you about this! Some of you may be aware of a documentary called Unrest, created by Jennifer Brea.
I first came across her on a TedTalks which was just amazing to watch as someone who has experienced M.E/CFS, talking about it on such a global platform. Watch the TedTalk here. That had me excited on so many levels because of her work, which I then went and looked for. She is an active campaigner, runs a support group online and directed Unrest.
Right the Documentary. A lovely friend of mine tagged me in the trailer and I was just amazed that she had managed to make a film about M.E/CFS. I haven’t watched it yet but I won’t publish this until I do. But in a strange way for me, this is more groundbreaking than some of the studies because it actively shows the struggle that we face rather than say just writing about it. People rarely see you at your worst so maybe this documentary will help explain the bad, bad days we all face.
Jennifer Brea seemed so passionate about not only the science element but the way it is overlooked or disregarded.
I bought my copy of Unrest on iTunes so I could write this as quickly as possible for all of you. Huddled around my laptop with my boyfriend Baloo, and I was oddly nervous. Would it represent the community? Would it address the issues I felt were most prominent for me as a person?
I felt like within the first fifteen minutes all my worries melted away and the reality of her life was almost like a parallel universe to mine. Yes, facts and age etc were different but the struggles were the same. I don’t want to spoil this film for anyone who wishes to watch it, so I will try to not give too much away.
But I wasn’t prepared for how emotional I found some of the conversations Jennifer had with her husband Omar. They were almost word for word just like conversations I have had with those close to me. The same fears and deeply rooted agony of not being enough of a human or a person to the people you love.
I cried quite a lot, but I found that that was good. I wanted it to be raw and truthful to the anguish that comes with losing the life you once had for this tiny slice of life left behind.
Yet, even with this sadness, I was amazed at the work and how tirelessly she campaigned and created this documentary from her bed. Life had dealt her a difficult hand, yet she was making her life count any way she could. That doesn’t discount from the struggles and the prejudice she experienced or mean that her health wasn’t affected by her efforts to raise awareness. Like all of us, her energy is limited and the payback was immense.
What struck me the most was that I wasn’t alone. The struggles and the fears that we all have, regardless of the scale of capability, are shared by most that are affected. We aren’t alone having those thoughts about the future or our future proficiencies as parents. It brought me a sense of comfort through the struggles that lay in front of us and we deal with.
Having said that, I found it a positive and impactful documentary, I can’t skip over the hard-hitting sections that are the true representation of the struggle that us warriors and our families face in the world, and the medical world. My feeling is that to bring a full picture of life with M.E/CFS, you have to address the medical and public perceptions of the relatively unknown illness and how it affects anyone on the scale of severity/functionality.
I was so thankful to have a resource I could show my family. For others, they potentially could use for schools or even medical professionals if needed. A picture is sometimes worth a thousand words and to be able to describe what you are feeling by the film is a gift to the community.
Before I wrap this blog post up, I just want to thank the team that made Unrest possible. You have made it so people can see me in my reality, the good, the bad, and the ugly.
Before a yabber on for days about this, I would highly recommend watching Unrest maybe with tissues and ice cream.
You can find all the links to how to buy the documentary and links to the social media for Unrest and Jennifer Brea below.
Happy Saturday people and the normal blog routine will be back on Tuesday. See you then.