She had, instead: anti-NMDA (N-methy-D-aspartate acid) receptor encephalitis. Her own antibodies were attacking her own brain.
An unsettling look into biology. Let’s just start with the imagery: Re her condition, “about 50% of the time, it is instigated by an ovarian tumor, called a teratoma….from the Greek teraton, or monster. These twisted cysts were a source of fascination even when there was no name for them (before the late 1800s). The first description dates back to a Babylonian text from 600 B.C. These masses of tissue range in size from microscopic to fist sized, or even bigger, and contain hair, teeth, bone, and sometimes even eyes, limbs and brain tissue. They are often located in the reproductive organs, brain, skull, tongue and neck and resemble pus-soaked hairballs….the good news is that they are usually – but not always – benign.”
You still with me? Ms. Cahalan did not have a teratoma, though it might have been ‘good news,’ since if you have one, and it’s removed, you tend to recuperate faster.
Which leads us to the question, what caused the author’s anti-NMDA (N-methy-D-aspartate acid) receptor encephalitis? Sadly, and unsettlingly, the cause of her seven-month descent into hell was never determined. Was it from a sneeze on a crowded bus, her cat, germs in her kitchen? What turned on the rogue antibodies? She doesn’t know and will likely never know what prompted her body to attack itself.
That part of the medical equation we have to live with. Other parts, not, and that’s what results in the author’s scathing indictment of the medical field. On her way out of the book, she lets fly with some well-deserved knockout punches to several of her attending physicians, who were just “too busy” to take time to pinpoint her malady. At the same time, she heaps unlimited praise on Dr. Najjar, who did take time. His story, from a struggling young student deemed a dunce, rising all the way to become one of the top neurosurgeons in the world, is another great and restorative (if your faith in humanity needs some restoring, and after this, it will) comeback stories. If you have a good physician, one who is willing to do what is necessary to prevail against disease, you will get down on your hands and knees and thank God for him or her after reading this harrowing and heart-breaking story.
There is real pathos here, and poetry, amidst the heartbreak: “Recalling moments like these, which occurred frequently during this tentative stage in my recovery, I wish I could, like a guardian angel, swoop down and help protect this sad, lost echo of myself.”
The good news: our author recovered well enough to resume her life and write this book. She documents how it saved at least one life, and the implication is that it has saved many more. She was no. 217 in the world to ever be diagnosed with AMP – the year after, there were hundreds, then thousands. Word was getting around. Yet, she shows how some self-possessed neuro-experts never get the memo. Shame.
You will never, ever think about mental illness or autism in the same way. For many of these individuals, the catalyst is infection, hard to find, hard to treat, and expensive to treat (the author estimates her bill at $1 million, covered by insurance).
In that regard, this book breaks new ground. Not many do. In her book, The Happiness Project, Gretchen Rubin suggests reading catastrophe stories. This true tale is exponentially so, to be trapped in your own body by your own deteriorating brain. Read it and weep, and then be glad our author’s trip to hell was round trip, and she’s back, and now she’s savings others, and changing the entire medical world, through the power of language, once taken from her, now restored.
PS Ms. Cahalan has a back page blurb from my acquaintance and former Clevelander (we grew up in the same neighborhood, few years apart) Mira Bartok, author, THE MEMORY PALACE, another superb and highly recommended memoir.