My rating: 4 of 5 stars
“The pages were breathing visibly, inhaling and exhaling all around me. My perspective had narrowed, as if I were looking down the hallway through a viewfinder. The fluorescent lights flickered, and the walls tightened claustrophobically around me. As the walls caved in, the ceiling stretched sky-high until I felt as if I were in a cathedral. I put my hand to my chest to quell my racing heart and told myself to breathe. I wasn’t frightened; it felt more like the sterile rush of looking down from the window of a hundred story skyscraper, knowing you won’t fall.”
This book is a memoir of Susannah’s experience with NMDA-receptor encephalitis. She walks the reader through her experience, as pieced together using parents journals, interviews with medical personnel, video footage etc. since she personally has no memory of the time where the disease was at its worst. Susannah was particularly lucky, because she didn’t face this disease alone. Her parents/friends etc. rallied around her believing that she would be ok. She is also fortunate that she didn’t have any “erratic” behavior in her past that would lead her loved ones to believe that it was possible for her to really be as crazy as she seemed.
This support system, and the need to have one when facing modern America’s medical system, is one of the biggest takeaways I had from reading this book. I feel that I am always being warned that one has to be responsible for their own medical decisions – and forcing second opinions, and requesting the more expensive tests that insurance companies want to try and deny, but the truth is, when you are sick you just aren’t capable sometimes. And this makes that support system invaluable.
Susannah begins with the first things she remember as being signs that she wasn’t well. These are mild things that on any given day could happen to a person and be brushed off as no big deal. All of these things together though were enough for her to get a Dr. appointment fairly quickly. Unfortunately, this is where the medical system immediately begins to fail Susannah. She is told that her tests are all normal, and she needs to cut down on stress in her life. She needs to drink less alcohol. She is suffering from withdrawal from alcohol. Her doctors only listen to the pieces they want to hear, making easy decisions to move her through the office more quickly. As her condition deteriorates her parents now have to advocate for her to get the best care possible. Now if she really had been a party girl with reckless, or harmful acts in her past would her parents have been so quick to say that she wasn’t schizophrenic or bi-polar?
The way the disease quickly devolves its host into a babbling crazy person certainly makes one wonder just how many psych patients out there really just have a disease that we haven’t discovered yet. Not to mention a disease that we are unlikely to discover due to the chasm between the training and research done by medical personnel and psychiatric personnel.
All in all, Susannah is very lucky to be alive and healthy. The book, although medically technical at times, is a very easy, and quick read. I personally would have enjoyed a slightly more scientific analysis of the disease, but I can always do a bit more research on my own. I tagged an extra star on this book because I think that people reading this book and becoming familiar with this hard to diagnose disease could definitely help some people stay out of psych units. For that reason I consider it to be an book of importance and the “easy reading” will help it reach the masses.