3 Lessons I Learned from the Book/Movie “Brain on Fire”
“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.” – Susannah Cahalan, From the movie Brain on Fire
The journey of the mystery illness in the Netflix’s original, “Brain on Fire” will keep you guessing until the very end, which is a metaphorical sentiment to our lives with chronic illness. When I began to watch the film, I had no idea what it was about, I wasn’t aware it was a book or a true story, I just thought the name was interesting so I gave it a try. I think many people living with a chronic disease can relate to Susannah Cahalan, the true story of a journalist at the New York Post, who one day subtly and gradually fell severely ill. She wrote about her experience in her autobiography “Brain on Fire: My Month of Madness,” which is a New York Times bestseller and now a Netflix original movie.
Due to my unsettling life with psoriasis, I saw much of myself in Susannah. I understood her frustrations of visiting different doctors with no answers or results while your condition worsens. I could relate to being prescribed different medicines which were useless against the wrath of my disease. I know the feeling of a misdiagnosis. I am aware of a single illness can have a significant impact on the entire family. I am familiar with the feeling of being “lost in your own body, lost in your own mind, lost in time.” Brain on Fire is a great movie which gives a true depiction of the unpredictable journey of an illness. Here are 3 lessons from the movie which can teach us about chronic illness.
The importance of having an emergency contact
Susannah’s behavior became more irrational and psychotic as the days went on. While at work she had a major break down in front of her coworkers. Her supervisor calmed her down and excused her from his office. The next thing he did was call corporate and asked for her file to be pulled so he could call her emergency contact. Every job I’ve had ask for an emergency contact, but I’ve never had to use it, nor have I seen the importance of it until this movie. Her boss saw a change in her, and instead of firing her, knew it was time to call in some external support which was, in this case, her parents. It reminded me to be sure to list someone as an emergency contact who I fully trust and understands my health.
The unresolved issues of the health care system
The film depicts the current issues with the healthcare system. In the movie, Susannah had 5 different doctor visits before she was finally admitted, which didn’t happen until her family advocated on her behalf. She was also given ineffective treatments that only attempted to mask her issue oppose to solving it. Can you remember how many doctors you had to see before finding relief or being properly diagnosed? How many treatments did you have to try before finding one that worked? How long did the doctor have you on these ineffective treatments before deciding they weren’t working for you? Most of the doctors only looked at a portion of the story and her symptoms, opposed to the entire picture which led to many misdiagnoses, which only further delayed the proper treatment. The other disheartening part of the story was the doctors asking her questions about her condition which should have already been in her records. The healthcare system needs to do a better job at communicating with doctors inside and outside its network to gain the most accurate information on a patient’s past health occurrences.
The importance of family advocacy
Susannah’s family spoke for her behalf when she couldn’t speak for herself. Her family was her biggest advocate and ally for her health. Her mother refused to accept the very first diagnosis and urged the doctors to do more. Susannah’s father didn’t take no for an answer when the doctors advised there was nothing more they could do to help his daughter. This movie displayed the importance of having people who can speak on your behalf for important health discussions when you can’t do so.