Brain on Fire: My Month of Madness

I didn’t want to face the cognitive issues, which were much more complex and upsetting than mere numbers on a scale. When I worried about being fat forever, marred in the eyes of those closest to me, I was actually worried about who I was going to be: Will I be as slow, dour, unfunny, and stupid as I now felt for the rest of my life? Will I ever again regain that spark that defines who I am?

The same afternoon as that journal entry, I walked the fifteen minutes from my home to downtown Summit to exert my self-sufficiency and get some exercise. Even though my shins hurt when I walked, I insisted on taking the jaunt to town alone. During my sojourn, a lawn worker stared at me. I instinctively put my hand to my bald spot to shield it from his view, but when my hand touched my head, I realized I was wearing a headband. So what the hell was he looking at? Later it dawned on me: he had been checking me out. Sure, I didn’t look my best, but I was still a woman. Momentarily, this boosted whatever was left of my shriveled confidence.

I then decided to take a spin class to address the “roasted pig” syndrome and found myself on a bike next to my high school field hockey coach, who kept looking over, trying to place me. I avoided her gaze, craning my neck to the right, but there I saw two younger girls from high school, also riding bikes. I wondered if they were laughing privately about how fat I was and if they snickered about how I was living with my parents. I felt such shame, but at the time, I couldn’t put my finger on the exact reason.

Now, I think that this shame emerged out of the precarious balancing act between fear of loss and acceptance of loss. Yes, I could once again read and write and make to-do lists, but I had lost confidence and a sense of self. Who am I? Am I a person who cowers in fear at the back of a spin class, avoiding everyone’s gaze? This uncertainty about who I am, this confusion over where I truly was in the time line of my illness and recovery, was ultimately the deeper source of the shame. A part of my soul believed that I would never be myself, the carefree, confident Susannah, again.

“How are you?” people continued to ask me constantly.

How was I? I didn’t even know who “I” was anymore.

After my apartment was packed up and cleared out, I brought home all my unread mail, but I didn’t open any of it until a few weeks later. Amid the piles of bills and junk mail, I found a manila envelope sent from the office where I had gotten my first MRI, before I was admitted to the hospital in March. Inside, there was my long-lost gold hematite ring. My lucky ring.

Sometimes, just when we need them, life wraps metaphors up in little bows for us. When you think all is lost, the things you need the most return unexpectedly.

CHAPTER 43 NDMA

As I recovered more and more of my former functions and personality traits, and began to more fully reintegrate myself into the world, I got used to people asking about my rare and fascinating illness. I never tried to articulate it, though, just falling back on the explanation I’d heard my parents repeat so many times: “My body attacked my brain.” But when Paul, my editor at the Post, wrote asking me to explain the disease to him, I finally decided to try to summarize what had happened to me. This seemed like an assignment in a good way, and for the first time, I felt up to the mission of attempting an answer.

“We want you back!” Paul wrote to me. “God, I sound like Jackson 5. So what exactly do you have?” his e- mail read. It felt strange but also comforting to hear a voice from before my illness: my life was now divided into “pre” and “post” in a way it had never been before. I was determined to get him an answer.

“What is my condition called again?” I yelled to my mom.

“NMDA autoimmune encephalitis,” my mom shouted back.

I typed “NDMA” into the search field. An industrial waste product? “What is it again?” I called.

She walked into the kitchen. “NMDA-receptor autoimmune encephalitis.”

I Googled the correct term and found a few pages, mostly abstracts of medical journal articles, but no Wikipedia page. After scrolling through several sites, I came across a New York Times Magazine “Diagnosis” column on the disease that chronicled the case of a woman who had the same symptoms as I did, but she had the monster tumor, the teratoma.⁵⁰ The day after they removed it, she awoke from a coma and started speaking and laughing with family members. The basic explanation about the immune system and the brain was confusing to me. Was this a viral disease? (No.) Was this caused by something environmental? (Maybe, partially.) Is it the kind of disease that you can pass down to your children? (Probably not.) Questions lingered, but I pushed myself to concentrate. I sent Paul a paragraph-long summary of my medical saga, ending, “It’s been a crazy couple of months, to say the least. I now know what it’s like to go mad.”

Paul responded with, “Clears ups a lot of my own curiosity,” he said, adding, “And you do realize that your sense of humor and your writing skills have returned, right? I mean that. I can see the evolution in your e-mails and text messages from the time you were sick until now. It’s like night and day.”

Buoyed by this new ability to explain, I began to research the disease in earnest and became obsessed with understanding how our bodies are capable of such underhanded betrayal. I found, to my frustration, that there’s more we don’t know about the disease than we do know.

No one knows why certain people, those without teratomas especially, get the disease, and there is no basic understanding of how it is triggered. We don’t understand how much impact environment has versus genetic predisposition. Studies seem to point to all autoimmune diseases in general as being about two-thirds environmental, one-third genetic. So did the hypothetical businessman who sneezed on me in the subway really start this horrible chain of reaction? Or was it something else in my environment? I had gone on the birth control patch around the time that my first symptoms cropped up, so could that possibly have instigated the disease? Though Dr. Dalmau and Dr. Najjar have given me no reason to think so, my gynecologist has decided to play it safe and refuses to put me back on the patch. Could my beloved cat have been a trigger? Angela, who later adopted her from me, told me that Dusty had been diagnosed with bowel inflammation, likely caused by an autoimmune disease. Was this a coincidence, or did she and I give each other something that caused both of our immune systems to pounce? Or was there something pernicious lurking around that messy Hell’s Kitchen apartment? I will likely never know. But doctors do believe that it was probably a combination of an external trigger, like the sneeze, birth control, or a toxic apartment, and a genetic predisposition toward developing those aggressive antibodies. Unfortunately, since it’s so hard to know what causes it, realistically prevention isn’t the goal; instead, the focus has to be on early diagnosis and rapid treatment.

Other mysteries prevail. Experts don’t even know why certain people have this type of autoantibody, or why it happened to strike during that exact time in my life. They can’t say for certain how the antibody gets through the blood-brain barrier, or if it is synthesized in the brain, nor do they understand why some people recover fully while others die or continue to suffer long after the treatment is finished.

But most do survive. And even though it’s a hellish experience, the disease is unique in that way, compared to other forms of deadly encephalitis or debilitating autoimmune diseases. It’s difficult to find another example where a patient can be comatose and near death, even in an intensive care unit, for many months yet eventually emerge relatively, or even fully, unscathed.

One thing this whole experience is slowly teaching me is how lucky I am. Right time, right place. NYU, Dr. Najjar, Dr. Dalmau. Without these places and people, where would I be? And if I had been struck by this disease just three years earlier, before Dr. Dalmau had identified the antibody, where would I be? Just three years marks the demarcation between a full life and a half-existence in an institution or, even worse, an early ending under the cold, hard tombstone.

CHAPTER 44 PARTIAL RETURN

As he tapered off my dose of steroids, Dr. Najjar prescribed biweekly at-home antibody