How it happened still is a mystery encased in medical riddles continuing to be untangled today about an auto-immune disease; we know it happens to primarily young women, but other than that, there is no true and consistent understanding. Historically over the past 100 years, there is an unexpected number of documented cases of young women who suddenly were filled with "hysteria." A notion befitting a 1900s novel on high society, women with fainting spells, however in today's advanced medical community, doctors and nurses and researchers might have a tiny inkling of reasonable and sound evidence to prove something significant. Something within the auto-immune disease category, but more specifically the unique and rare anti-NMDA receptor encephalitis.
But even though medical communities might slowly be familiar with this, science is still unfolding pieces every day for more awareness, how to manage it, and one day, hopefully a cure. The "madness" that descended upon the author, one that tested a relationship with her new boyfriend, and also assuredly bonded her once estranged parents, became a goal to combine efforts to figure it out together, in collaboration with doctors who believed. With her family dedicated to her, they shared a common journal in her hospital room to record moments they recorded when they visited with her, seizures, and events that went beyond understanding for a healthy human body, comparing these journaled events with shocking camera footage to decode a pattern, anything to explain why Cahalan was besieged with this medically "new," disease.
What I respected was her acknowledgement that she was lucky, on so many levels. She had a solid family support structure, and a boyfriend who was there for her every step of the way, even though they had just started dating. She had extensive medical health insurance as well, but even with all of that, while it still gave her the luxury to be potentially cared for more than others, she still encountered doubt and disbelief and many diagnosed her initially with mental disorders, paranoia, and more. What about patients who don't have the "right" healthcare coverage, who don't fit into the "approved" and "believable" medical population? What might patients such as those experience?
Moving and heart-wrenching, and downright scary, this memoir of a young woman's spiral into a series of medical appointments, memory loss, physical debilitation, seizures, and more is at times thoughtful and straight-forward, but mostly filled with downright horror. It is completely terrifying to imagine what it might be like for a young mind to go awry, astray, and fall apart, all without any medical research or support for those suffering from an auto-immune disease that many still don't believe exists.
Read this. Recommend it to your friends with young daughters. Watch all and care for them. This is important.
Disclosure: I downloaded this book for free from my library's Libby app.
