“What else had I forgotten? What else would come back, knocking me off balance and reminding me how tenuous my grip on reality was?”
Paranoia descended on Susannah like a sudden rainstorm. One day she was fine and the next she had uncontrollable thoughts and urges. The paranoia led her down a path that would take years of fighting to recover from. She started having seizures, moving like a zombie and imagining things that weren’t there. As her friends and family saw her becoming a person they did not know, they sought the help of doctor after doctor. It wasn’t until a brain biopsy was ordered that her disease was diagnosed – Anti-NMDA Receptor Encephalitis.
I don’t remember where I heard about Brain on Fire, but I do remember that I put it on my book list right after hearing about it because it sounded fascinating. The subtitle is “My Month of Madness,” because the book also addresses her not having memories during the time she was sick. I didn’t have to wait long for the ebook to become available from my local library.
One of the most striking things about her disease is the lack of being able to have memories. An entire month of her life is missing for her. She has videotapes from the hospital, medical records and her father’s journal to help her find out what happened to her. However, as a journalist, she wanted to find out more. So, she decided to interview people who came into contact with her and write this book to document her journey.
Susannah’s story has a happy ending so far. She could have a recurrence at any point and the odds of recovering again are never sure. Even those who are correctly diagnosed sometimes don’t respond to treatments and either stay in a world where they can’t make memories and have paranoia or pass away. However, she knows at least one person who was diagnosed because of her story going public. If she can help others, she believes her experience could have been worth it – even though it awful.
Do you know of anyone who was diagnosed with a rare disease? Share the story in the comments!