"Brain on Fire": A Movie That Hits Close to Home
Recently, a new movie popped up on Netflix called Brain on Fire. From the moment I saw the title, I immediately thought of my life with Multiple Sclerosis. As I clicked on it, I was even more intrigued: “Stricken with seizures, psychosis and memory loss, a young New York Post reporter visits doctor after doctor in search of an elusive diagnosis.” Whoa! And starring the criminally underrated Chloë Grace Moretz (aka Hit-Girl from the movie Kick-@ss)! Sign me up! Potential spoilers from this point on, but I don’t think spoilers will harm your enjoyment of this film. The movie is based on the best selling memoir of the same name by Susannah Cahalan about her experience with a rare, hard to diagnose autoimmune disease (well, that sounds familiar). While not about MS, many of the experiences in the film really hit home. So much so, that I feel like it helps show what some of us have gone through on our way to a diagnosis.
Searching for an elusive diagnosis
Susannah, played by Moretz, begins to experience strange symptoms out of the blue. Seizures, memory loss, and even hallucinations. With the help of her boyfriend and parents, she begins to seek help for her issues, which begin to increase in intensity. Doctor after doctor misdiagnoses her - some looking at her youth and dismissing it as partying too hard, others assuming that it’s a psychological issue (despite some clear evidence that it’s not). It’s not until one doctor pleads with her mentor (who is teaching and not practicing at the time) to give her a look that they are able to determine that she has Anti-NMDA receptor encephalitis, a condition where the immune system attacks NMDA receptors in the brain. It is not unlike the way MS causes our immune system to attack the myelin sheath surrounding our nerves. Once they discover the cause, Susannah was able to be treated and nearly fully recover.
Parallels to my own experience
It’s odd that I get so excited by such a film, but some of the parallels to my own experience made me feel like someone else out there “gets it”. That I’m not the only one to be misdiagnosed and even told that I was probably partying too hard because of my youth. While it was a different disease with different symptoms, the movie still spoke to me in many ways. Seeing her parents question doctors reminded me of my own parents when I was young and in the hospital (my affinity for the film is certainly aided by the fact that Susannah and I were about the same age when we began experiencing issues). In both cases, doctors were seemingly ignoring facts in favor of a diagnosis they seemed to have preconceived. The story really highlights something I’ve written about before, that not all doctors are equal, and that you and/or your family have to advocate for you and not give up. You have to keep questioning your medical staff and pushing to find the correct answer and solution to what is wrong with you.
Coming out stronger
So many quotes from the film hit home, too; I felt like it could have easily been me or my family saying them. From the opening quote “Have you ever been trapped? Lost in your own body, lost in your own mind, lost in time? So desperate to escape, to just... Get out” - wow, yes! Her boyfriend pleading with a doctor that she doesn’t seem herself, but that “she’s still in there”. At the end of the film, she agrees to tell her story because “if it helps someone, then it’s worth it”, and that definitely is the only reason I am so open about my experiences. Even the way she ends the movie, saying “This new Susannah is a lot like the old Susannah, but she's so much stronger.”, that’s absolutely how I feel about my life with MS.
Shedding light on rare autoimmune diseases
OK, so I’ll stop gushing over this movie and just reiterate that I really enjoyed it. I will warn you though, that some of it can hit home a little too much. I found a few scenes that echoed my own experiences so much that it really brought me back to them. That isn’t always a pleasant thing to go through, so keep that in mind if you decide to watch this movie. I do hope that the film does well and helps shed some light on what it’s like trying to get the correct diagnosis with a rare autoimmune disease.
How many specialists did you see before finding "The One"?