“Someone once asked, “If you could take it all back, would you?”
At the time I didn’t know. Now I do. I wouldn’t take that terrible experience back for anything in the world. Too much light has come out of my darkness.”— Susannah Cahalan, Brain on Fire: My Month of Madness
Tag: brain on fire
I slurred my words. I drooled. I didn’t have proper control over my swallowing … I kept my arms out in unnatural poses. At one point, I was like the Bride of Frankenstein — I kept my arms out rigidly. I was slow. I could hardly walk, and when I did, I needed to be supported … I started [acting] very psychotic. I believed that I could age people with my mind. If I looked at them, wrinkles would form, and if I looked away, they would suddenly, magically get younger. And I believed that my father had murdered my stepmother. I believed all these incredibly paranoid — a huge, extreme example of persecution complex. And then as the days went on, I stopped being as psychotic, and I started entering into a catatonic stage, which was characterized by just complete lack of emotion, inability to relate, or to read, or hardly to be able to speak.
(Photo credit: Julie Stapen)
I’m truly glad she’s ok. Auto-immune diseases are horrible.
“While he may be an excellent doctor in many respects, Dr. Bailey is also, in some ways, a perfect example of what is wrong with medicine. I was just a number to him (and if he saw thirty-five patients a day, as he told me, that means I was one of a very large number). He is a by-product of a defective system that forces neurologists to spend five minutes with X number of patients a day to maintain their bottom line. It’s a bad system. Dr. Bailey is not the exception to the rule. He is the rule. I’m the one who is an exception. I’m the one who is lucky. I did not slip through a system that is designed to miss cases just like my own – cases that require time and patience and individual attention. Sure, when I talked to him, I was shocked that he knew nothing about the disease, but that wasn’t the really shocking part; I realize now that my survival, my recovery – my ability to write this book – is the shocking part.”
— Susannah Cahalan in Brain on Fire: My Month of Madness
I just finished watching Brain on Fire. It focuses on how doctors often look for the easy answer instead of putting in the work to diagnose and treat people with physical invisible illnesses. The main character is dismissed ignored despite her having some symptoms that would never be mental illness alone. She and her family had to fight to get the doctors to do their jobs.
I can relate to this and I know plenty of other spoonies can to.
I just remembered yesterday that I saw a neurologist really early into my sickness problems. and he was terrible and made me cry and was really dismissive. Because i didnt have a neurology problem.
Several years later, I went to mayo and got sent all over the building to different doctors, and finally, it was the neurologist who was like “oh you have this neurology problem.”
if that first dickhead had believed me and done his job, I could have been saved years of uncertainty and bad doctors
PSA: You should all go watch “Brain on Fire” with Chloë Grace Moretz and Richard Armitage on Netflix. It is a fascinating medical drama that raises awareness for autoimmune disease.
As someone with a number of chronic illnesses- this was very important to me. Getting diagnosed with a chronic illness, especially a rare one, is an extremely arduous process. It involves a lot of luck, but more than anything, persistence and self-advocacy. This is exactly what the movie depicts through Chloë’s beautiful performance.
It really helped me to feel like other people understood what I’ve been through and I hope others of you will feel the same 💕
But more than anything, I hope it inspires someone who needs help, or is still seeking their true diagnosis, to get what they need.
THIS^
Going through doctor and doctor. People telling you that everything is perfectly fine. That your results came back normal. It really is an awful experience. Especially the fact that people just don’t understand.
“We are, in the end, a sum of our parts, and when the body fails, all the virtues we hold dear go with it.”Â
I just saw the movie this book was based on. And it was really good. Made me aware of a rare autoimmune disease I had never heard of. I could really relate to the fact that the doctors could just not come up with a proper diagnosis. Just sort of being pushed aside, as if you didn’t matter or weren’t important enough. Simply wondering what the hell is wrong with you and if you will ever get better.
Needless to say I highly recommend the movie. Chloe Grace Mortez did an amazing job in this movie. Will definitley read the author’s story and book in the future!
🔥 There is beauty in destruction🔥 