A Shared Journal

A Review and a bit more: Brain on Fire

It took me a long time to do this review because it hit me pretty close to home. This post will be a little bit more than a review.

Brain on Fire is a movie based on the true story and book Brain on Fire My Month Of Madness by Susannah Cahalan. She writes her battle with her own mind as she waits for a diagnosis. It is an absolutely compelling story of human strength and resilience and also highlights the flaws in our perception of healthcare for the mind.

Be prepared with a box of tissue because this is a movie we can all relate to. I asked a few of my friends and family to watch it as I felt a little exposed because of all the symptoms she was showing and her struggle to try to tell anyone that something was not right.

I can honestly say that this movie depicts and most accurately describes what my brain goes through before and after seizures and complications from brain damage caused by Multiple Sclerosis. The hardest part to watch in this movie was the confusion and the withdrawal she goes through. I have felt this first hand. It’s a slow decline where I would notice I was “spacing out” and couldn’t focus on my computer screen. To this day when there are a lot of noises and people it can overwhelm me and I literally can’t understand what anyone is saying although they are speaking perfect English. Over stimulation and stress can leave me so confused I become bedridden for days from brain exhaustion. To be so misunderstood as “lazy” “bitchy” etc. my entire life only to find out that my complaints were more than legitimate. The brain damage caused by MS is irreversible and equivalent to a traumatic blow to the head, only nothing externally has happened. Like in the movie, when your own brain is sick and injured it is the worst feeling of loss, confusion and frustration any being can go through. I will also agree with the recovery process. It is a long and ongoing travel to a full recovery and I’ve learned how to adapt to some of my inabilities. I can tell you first hand, it is not easy relearning how to do basic things like walking, writing and learning to trust your own mind even though it has failed me time and time again. I have to tell myself daily who I am, how many kids do I have, who my family members are.

The impact her condition caused on her entire family is also a very difficult thing for me to watch. I still struggle with not wanting to ask for help for fear of burdening my loved ones. I accept that I do have positive people around me who do enjoy helping me and it’s not so bad asking for help.

It is so important that I share my personal journey because I see it every day. More and more people are being diagnosed with Alzheimer’s, Dementia, Multiple Sclerosis, ALS, BiPolar disorder, Depression… it’s overwhelming and terrifying to know and feel that you are losing your mind and you don’t know why or what is real.

I wish I could tell you that everyone is helpful and that everyone is understanding and kind, but that is what Hollywood is for. I’ve experienced bullying, abuse, disbelief.. the truth is not everyone is kind and looking out for your best interests. Some family and friends didn’t believe me when I said I felt like I was dying. I’ve been called a liar, a “great actress”, “she’s not really sick” and once the initial shock of the diagnosis, I was still told there’s nothing wrong and I need to get over it. I look back on how wrongly I was treated and I think about those who remain trapped in their minds and lose their ability to even verbalize how they feel before they even get close to a proper diagnosis. All of the negative parts of finding a diagnosis are born out of ignorance and there is a quick cure for that. Knowledge.

I highly recommend this movie found on Netflix and I hope it helps you to understand how to navigate through finding a diagnosis for yourself. I hope it also helps you understand how complex the disease of the mind is. It is a terrifying and life threatening road that many don’t make out of alive. Susannah Cahalan received the cure in time and this movie leaves a lot of promise for future research and cures for brain diseases.

My next stop will be to pick up the book!

Hope you enjoy the movie!

Much love,

SS

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