Brain on Fire - by Susannah Cahalan
Published:
Brain on Fire - by Susannah Cahalan
Read: 2024-12-24
Recommend: 10/10
Reading this book feels like solving a puzzle alongside the author. We’re fortunate to learn about this newly identified condition from such a gifted writer.
Notes
Here are some text that I highlighted in the book:
I seemed to be able to somehow pull myself together when I had visitors, but it would often leave me depleted and unable to communicate for hours afterward, as if I had devoted all my energy to acting normal.
Dr. Najjar handed me a blank sheet of paper that he had ripped out of his notebook and said, “Would you draw a clock for me and fill in all the numbers, 1 through 12?” I looked up at him with confusion. “As you remember it, Susannah. It does not have to be perfect.”
The doctor shaved a good five-inch diameter section from my head, but, although I appeared fully conscious, I did not scream, call out, or cry. My dad again admired this strength, though it’s possible I simply had no idea what was going on. I sat on the bed unfazed with my head wrapped in a towel, as if I had just received a spa treatment. Fighting back tears, my dad knelt beside me. “Remember what I told you. What is the strategy?” “One step at a time.” “What is the slope of the line?” “Positive.”
There was a time, not so long ago, when neurologists believed that the brain was immunoprivileged, meaning it was completely separate from the immune system’s lymphocytes; now doctors use the careful phrasing “immuno-different.” The blood-brain barrier (BBB) is a dense patchwork quilt of vessels that serve as gates, regulating the passage of substances, like bacteria, chemicals, and drugs, from the blood to the brain. Researchers have discovered that the BBB does allow for certain B-cells and T-cells to squeeze through, in a process called diapedesis, to do regular “checkups.” But this was no routine checkup. The immune cells it had let through, which were supposed to protect the body, were in mid-blitz. This was the evidence Dr. Najjar had needed: I was in the grip of some kind of autoimmune disease.
If he found that I had anti-NMDA-receptor autoimmune encephalitis, it would make me the 217th person worldwide to be diagnosed since 2007. It just begged the question: If it took so long for one of the best hospitals in the world to get to this step, how many other people were going untreated, diagnosed with a mental illness or condemned to a life in a nursing home or a psychiatric ward?
On behalf of our daughter Susannah Cahalan, we would like very much to thank the entire staff of the epilepsy floor at NYU Medical Center. We came to you with a difficult and desperate situation, and you responded with skill and compassion. Susannah is a wonderful young woman who deserved your hard work. Her mother and I will forever be in your debt. I cannot think of more meaningful work than what you do every day.
This she found reassuring. I had defined exactly what was wrong with me. Often those with neurological issues cannot readily identify what is the matter. They don’t have the self-awareness to understand that they are ill. Paradoxically my ability to recognize my own weaknesses was a strength.
By contrast with my newfound connection with my dad, ever since I was released from the hospital, there had been the cloud of the pills and everything else hanging over my mother and me. I think it’s precisely because of how close my mother and I had been prior to my illness that our relationship suffered. Perhaps because my dad had been more of a footnote in my life, whereas my mom was a dominant force, it was easier for my father to engage with this “new” me.
I could tell that he felt sorry for me, and there’s nothing worse than seeing pity radiating from the eyes of a former lover.
I had enough distance from my own madness to view it as a hypothetical. But watching myself on screen, up close and personal, obliterated that journalistic distance. The girl in the video is a reminder about how fragile our hold on sanity and health is and how much we are at the utter whim of our Brutus bodies, which will inevitably, one day, turn on us for good. I am a prisoner, as we all are. And with that realization comes an aching sense of vulnerability.
Survivor’s guilt as a kind of posttraumatic stress disorder (PTSD) is common—a study indicates that 20 to 30 percent of survivors develop it—and it has been documented in those with cancer and AIDS, as well as war veterans. I can sincerely relate to this feeling, even though in some ways, my problem is the opposite of PTSD: whereas most PTSD sufferers are desperately trying to escape their memories of the original trauma, I have none.
I live with this fear. It does not control me or hinder my resolve, but I do live with it. The friends and relatives I interviewed would never have used the term skittish to describe me, but every now and then, when I’m on the subway and the colors seem brighter than normal, I think, Is it the lighting, or am I going crazy again?
Almost every day, something reemerges. It can be something insignificant, like the moss-colored socks at the hospital, or a simple word, like the time in the drugstore when I saw a box of Colace, the stool softener I had taken at the hospital, and the memories of Nurse Adeline came rushing in with it. During these moments, I can’t help but think that the other Susannah is calling out to me as if to say, I may be gone, but I’m not forgotten. Like the girl in the video: “Please.” But with every memory I recapture, I know there are hundreds, thousands even, that I cannot conjure up. No matter how many doctors I speak with, no matter how many interviews I conduct or how many notebooks I scavenge, there will be many experiences, bits of my life that have vanished.