Though I never properly thanked my father (or, for that matter my mom, Stephen, my friends, or even the doctors and nurses), we now met for dinner regularly, which was a vast improvement over the once-every–six months relationship we had had before. Sometimes, now, over a meal, we lock eyes and begin speaking in some sort of secret code, which could be described as an otherworldly connection, inadvertently freezing out everyone else at the table. I never realized how rude we often were until Giselle later brought it up. “I don’t think you guys are aware of it,” she confided, “but sometimes it’s hard for people around you to feel included.”
We didn’t mean to exclude others. My dad and I had gone off to war, fought in the trenches, and against all odds had come out of it alive and intact. There are few other experiences that can bring two people closer than staring death in the face.
. . .
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.
To cope, my mom actively rewrote the narrative of my disease, insisting that I was “never really that bad” and that she “always knew I would recover.” I was too strong to be sick forever, she told herself. She couldn’t come to terms with the fact that I wasn’t yet fully recovered until one afternoon in midsummer when we went out to eat, just the two of us, at J. B. Winberie’s in Summit. It was a magnificent evening, with a slight breeze rustling the umbrellas above the patio furniture, so we took seats outdoors and ordered fish entrees and a glass of white wine each.
As we ate, I began to ask her questions about how I had behaved during those days in Summit before I was admitted to the hospital. I still had only nebulous recollections, mostly of things that had turned out to be hallucinations, and I wasn’t sure what was real or not. The whole thing was still a mystery to me, and I was eager to piece together what had happened.
“You were just out of your mind,” she said. “Do you remember when you had your EEG done?”
EEG? “No, I don’t.” But after some rehashing, I did remember something: the nurse at Dr. Bailey’s office with her strobe light. Unlike the unnerving scene in the hospital video, when my experience of those moments was likely never encoded in my brain at all, this memory had been made and stored. The problem was retrieving it. When the brain is working to remember something, similar patterns of neurons fire as they did during the perception of the original event. These networks are linked, and each time we revisit them, they become stronger and more associated. But they need the proper retrieval cues—words, smells, images—for them to be brought back as memories.
Watching me struggle to remember this, my mom’s face flushed, and her lower lip quivered. She buried her face in her hands; it was the first time I had seen her cry since long before I was sick.
“I’m better now, Mom. Don’t cry.”
“I know, I know. I’m being silly,” she said. “Oh, and you were totally nuts. You walked into a restaurant and demanded food. Just demanded it. Although I guess that’s not too far outside your normal personality.”
We laughed. Just for a brief moment, I could picture the rows of booths in the diner and a blurry man behind the countertop handing me coffee. This recovered image taunted me with the echoes of all the other moments I had forgotten and would never get back. And then it was gone.
More than just the recovery of a memory, though, this was the turning point when my mom finally conceded how afraid she had been, revealing through her tears that she hadn’t always been certain that I would be “fine.” And with that simple, natural gesture, our relationship rounded a corner. She once again became my ultimate confidante, companion, and supporter. It took accepting how close I had come to death (something impossible before, because it was her survival mechanism to deny) to finally allow us to move forward together.
CHAPTER 42
INFINITE JEST
Four months after my initial hospital stay, the lease to my Hell’s Kitchen apartment expired. My disability payments, which had been cut in half once they changed from short to long term, could no longer cover the rental expense, so my father met me there one morning to pack up my old life and clear the way for a new, uncertain one.
The red brick tenement was the same as it had always been, with its broken buzzer, stray marks of graffiti, and the “No Trespassing” sign on the door. Piles of unopened mail cluttered my mailbox. The building’s superintendent, a chubby, middle-aged man with a thick Spanish accent, walked by us with a short, “How ya doin’?” as if I had never left. Maybe he genuinely hadn’t noticed. My father and I climbed the stairs, past the chipping, gray-yellow wallpaper. It was all so familiar that when we made it to my apartment, I half-expected Dusty to still be there waiting for me, even though my friend Ginger had been fostering her for months.
My father and I packed up piles of records, bins of winter clothes, books, pots and pans, and bedding. Halfway through our cleanup, the air conditioner went kaput, which was more than we could bear in Manhattan’s blast-furnace July heat. So we returned the next day in the sweltering heat to finally finish the place off.
There is only one line about packing up the apartment in my journal, and it’s fairly flippant, like most of my early diary entries: “He helped me pack up my apartment (good-bye living alone).” In this short line, I don’t betray the disappointment I felt about having to not only officially abandon my self-sufficient life, but also give up my first real apartment, the symbol of my forgone adulthood. It was one thing to live at my parents’ house for a few months, knowing that I had my own place just a train ride away. Now my only home was with my mom; it was like a complete return to childhood. My life of freedom in Manhattan was officially over, at least for now.
The reality was that I was no longer capable of living on my own. It was a fact that I understood but still didn’t want to face. Instead I focused on getting my future in order. I began keeping to-do lists with names of people I wanted to thank, projects I wanted to start, or articles I someday wanted to write. Every morning I planned out my day, including insignificant things like “walk to town” or “read the papers,” so I could experience the satisfaction of crossing them off. These were crucial little details, because they showed that the frontal lobe, the “CEO,” was starting to repair itself.
Instead of attending the cognitive rehab sessions my doctor had recommended, I studied for the Graduate Record Exam, believing for a period of time that school might be the next step in my murky destiny. I bought several study guides to help me prepare, putting every word I didn’t know on a flash card, going through them, and then writing down the ones I could not remember. That took up pages and pages of my diary, because I could no longer commit new words to memory as well as I used to.
I also began to read David Foster Wallace’s thousand-page dystopian novel Infinite Jest, because a pompous professor had once been horrified that I hadn’t read it yet. With a dictionary in hand, I read through the novel, stopping every other word or so to find a definition. I kept a running file of all the words that I needed to define from the book. The words I picked are obtuse to me even now, but they are also strangely illuminating:
effete (adj): no longer fertile; having lost character, strength, vitality; marked by weakness or decadence
Teratogenic (adj): of, relating to, or causing developmental malformations
Lazarette (noun): sick room
Despite this studious attention to vocabulary, when people asked me what the book was about I’d have to confess, “I have no idea.”
I became preoccupied with my physical state. My diary entries around this time reflect a growing obsession with how much weight I had gained. My d
istended stomach, cellulite-covered thighs, and bloated cheeks disgusted me, and I tried in vain to avoid my image in any reflective surfaces. Often I would sit outside Starbucks and take stock of the many different types of women walking by: “I’d take her thighs,” or “I’d trade bodies with her,” or “I wish I had her arms.”
I described myself as a “roasted pig,” revolted by how my body and face seemed swollen. “Gross,” I wrote on June 16. “I make myself sick.”
Sure, I had gained a lot of weight since leaving the hospital, where I weighed in at an unnaturally skinny (for me) 110 pounds. Just three months later, I had put on 50 pounds, 20 of which were normal recovery weight and 30 of which were due to side effects of the steroids and antipsychotics, as well as my sedentary lifestyle and constant indulgence in mint chocolate chip ice cream. The steroids also made my face moon-shaped and chipmunk-like, to the point where I hardly recognized myself in the mirror. I had begun to fear that I would never lose the weight and would be forever confined to this foreign body. The problem was much more superficial—but easier to grapple with—than my real worries about being trapped in my broken mind. I know now that I focused on my body because 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 auto
antibody, 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.
Brain on Fire Page 19