Brain On Fire: My Month Of Madness Part 16

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, 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: 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 (adj): no longer fertile; having lost character, strength, vitality; marked by weakness or decadence Teratogenic (adj): of, relating to, or causing developmental malformations (adj): of, relating to, or causing developmental malformations Lazarette (noun): sick room (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 distended 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 h.e.l.l 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 cla.s.s 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 cla.s.s, 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 hemat.i.te 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, 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 a.s.signment in a good way, and for the first time, I felt up to the mission of attempting an answer. 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 a.s.signment 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. "G.o.d, 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 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. "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 pa.s.s 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." 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 pa.s.s 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 h.e.l.l'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 h.e.l.lish 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 inst.i.tution 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 IVIG treatments once the insurance company finally allowed them to be conducted at home. A nurse would arrive midmornings to hook up my IV to the bags of immunoglobulin over three to four hours. Between July and December, I had twelve infusions.

I continued my correspondence with Paul throughout July. Inevitably every few days he would ask about when I was planning to return to work, and eventually we agreed that the best strategy would be for me to casually stop by the Post Post offices and say h.e.l.lo to the staff without pomp and circ.u.mstance. We picked a date in mid-July. I remember the charge I felt as I blow-dried my hair, applied makeup, and plucked my eyebrows, the first time I had done any of that since before I was sick. Then I stood in front of my closet and examined my paltry wardrobe. Only a few things still fit, since I was well ensconced in my "roasted pig" stage, so I chose my trusty black tent dress. My brother drove me to the station, and I took my first independent train ride into the city. From Penn Station I walked uptown to my offices in the scorching midsummer weather. offices and say h.e.l.lo to the staff without pomp and circ.u.mstance. We picked a date in mid-July. I remember the charge I felt as I blow-dried my hair, applied makeup, and plucked my eyebrows, the first time I had done any of that since before I was sick. Then I stood in front of my closet and examined my paltry wardrobe. Only a few things still fit, since I was well ensconced in my "roasted pig" stage, so I chose my trusty black tent dress. My brother drove me to the station, and I took my first independent train ride into the city. From Penn Station I walked uptown to my offices in the scorching midsummer weather.

But when I got to the towering News Corp. building, the place where I had worked since I was a teenager, I felt the rush of adrenaline exit my system, leaving me depleted. This is too soon, This is too soon, I realized; I realized; I'm not ready I'm not ready.

So I texted Paul instead and asked him to meet me behind the building. I had no idea then, but Paul was nearly as nervous as I was, concerned about how I would be in person and how he should treat this new Susannah. Angela, who had visited me recently in Summit, told him that I was significantly improved but still a far cry from the colleague they were used to.

When Paul walked out of the building's revolving door, he saw me and immediately noticed how much I had physically changed: I looked like a little cherub, he thought, like a ten-year-old version of myself, complete with baby fat.

"So how the f.u.c.k are you?" Paul asked, hugging me.

"I'm good," I heard myself say. I was so nervous that I could only concentrate on the sweat trickling down my lower back, much like when I ran into Kristy with my mom, but this time I didn't have the buffer of another person to keep the conversation going. It was doubly difficult for me to even focus enough to look him in the eye, let alone prove to him that I would soon be ready to return to work. He cracked some jokes and talked about the job, but I couldn't keep up. I noticed myself laughing at inappropriate times but then missing the cues to his punch lines. I could tell he was trying hard to deflect the awkward silences by maintaining a happy-go-lucky facade, but he was struggling. My state was a bigger shock than he had antic.i.p.ated.

"I'm still on a lot of drugs," I said offhandedly, hoping to provide an explanation for my changed self. "But by the time I come back, I will be off most of them."

"That's great. We have your desk all ready for you to return. Do you want to come up and say hi to everyone? I know people miss you."

"Nah. I'll do that another day," I said, looking down at the ground. "I'm not ready."

We hugged once more. I watched Paul disappear through the revolving doors.

When he got upstairs, he went straight to Angela's desk. "That's not the Susannah I know," he said.

It was an untenable position. As a friend he was deeply concerned about my recovery and my future, but as a boss, he couldn't help but wonder if I would ever be capable of returning to my duties as a reporter.

Nevertheless, two weeks after my brief reunion with Paul, Mackenzie called me up about an a.s.signment for Pulse, the paper's entertainment section. As I heard her voice, though, it reminded me of our last interaction: the night in Summit when I had failed to write the article about Gimp, right around when my seizures began in earnest. Along with that memory came a sickening feeling of failure. The self-disgust transformed into joy, though, when I realized she was offering me a new a.s.signment.

"I want you to write about Facebook etiquette," she said.

I may not have been ready to see all my old coworkers, but I jumped at the opportunity to write an article. I spent a week manically working on it, treating it like social networking's version of Watergate, calling up sources, friends, and press people to get their perspectives. But once I put all my notes together in one file, I stared at the blinking cursor and couldn't picture how to begin. The memory of that failed Gimp article only intensified my writer's block. Would I ever be able to write again?

After I sat in front of that blank screen for nearly an hour, though, the words started to come, slowly at first and then like a fountain. The writing was rough and needed a lot of editing, but I had put fingers to keyboard, and nothing in the world felt better than that.

My article ran on July 28 in the Post Post's Pulse section under the headline "Inviting Rudeness." I remember making a special trip to town to pick up the paper that day and glowing with pride when I opened it and saw my article there. Sure, I'd had hundreds of pieces published before, but this one mattered more than any other. I wanted to show the article to everyone, from the Starbucks baristas who had served me coffee all summer, to the younger girls who rode beside me in that spin cla.s.s, to the woman at the wedding who had asked if I would ever regain my spark. This article was my redemption. It shouted to the world: I'm back! I'm back! That was the most excited I had ever been about a story running in my whole career. I wasn't going to graduate school; I was going back to work. That was the most excited I had ever been about a story running in my whole career. I wasn't going to graduate school; I was going back to work.

And a little over a week later I gathered up the courage to do just that-at least for a brief catch-up. Paul and Angela were out that day, so Mackenzie signed me in downstairs, my ID having long ago vanished somewhere in my hospital blackout. She acted as my chauffeur and protector during the visit. Walking me into the tenth-floor newsroom, Mackenzie felt as if she was dropping a toddler off at her first day of kindergarten. I took a deep breath, smoothed out the same black tent dress that I had worn for my first aborted visit, and headed inside.

No one noticed me. They were too transfixed on the YankeesRed Sox game. Mackenzie led me past my old desk on our way to Steve's office. "Look who we have here," Mackenzie said to Steve.

Steve looked up from his screen, and it was clear that at first he didn't recognize me. Then he said an uncomfortable but warm h.e.l.lo. "So, when are you coming back?"

My face flushed. "Soon, really soon."

I shifted my weight anxiously from one foot to the next, trying to think of anything to say, but nothing came. When I walked out of his office, my face still flushed by the interaction, a group of reporters who had worked with me on the Sunday paper started to gather. I hadn't talked to most of them for over six months, and though it couldn't have been more than six people, it felt like a mob. I became claustrophobic and sweaty. It was hard to concentrate on any one thing, so I looked at my feet.

Sue, the mother hen of the newsroom, gave me a full-bodied hug. She pulled back and said loud enough for the crowd to hear, "Why are you nervous? We all love you."

The sentiment was kind, but it just made me feel more self-conscious. Was it that obvious that I was uncomfortable? There seemed to be no buffer between what I was feeling and how I appeared. I suddenly felt violently, emotionally naked in front of all these coworkers and friends. I felt like a lab rat, innards exposed, waiting for the impending dissection. The thought jolted me: Would I ever again feel comfortable in this newsroom that basically raised me?

CHAPTER 45 THE FIVE W'S

I did eventually return to work, but not until September, about a month after that partial return and almost seven months to the date after I had my breakdown at work. I recall agreeing obediently as Human Resources suggested that they would start me off slowly at first, part time for only a few days a week. Instead I jumped right back in as if I had never been gone. For years I had pursued my goals like a marathoner: steadily running off to my a.s.signments, jogging to a subway to make it in on time for work, eyes and ears always attuned to the next career step. Now I had had the opportunity to stop, collect my breath, and rea.s.sess my destinations, but all I wanted to do was keep on moving. did eventually return to work, but not until September, about a month after that partial return and almost seven months to the date after I had my breakdown at work. I recall agreeing obediently as Human Resources suggested that they would start me off slowly at first, part time for only a few days a week. Instead I jumped right back in as if I had never been gone. For years I had pursued my goals like a marathoner: steadily running off to my a.s.signments, jogging to a subway to make it in on time for work, eyes and ears always attuned to the next career step. Now I had had the opportunity to stop, collect my breath, and rea.s.sess my destinations, but all I wanted to do was keep on moving.

Luckily the Post Post made it easy for me to dive back in feet first. As Paul had promised, my desk had been left literally untouched: all of my books, doc.u.ments, and even a paper cup were still sitting there where I had left them. made it easy for me to dive back in feet first. As Paul had promised, my desk had been left literally untouched: all of my books, doc.u.ments, and even a paper cup were still sitting there where I had left them.

My first a.s.signments, both briefs, were relatively trivial: one was about a woman voted hottest bartender in New York City and the other a short profile on a drug addict who had just written a memoir. I was being eased back into the daily tasks of writing and reporting, but I didn't care. This fieriness contrasted with my lackl.u.s.ter performance right before I left work seven months before, when I couldn't muster up the verve even to interview John Walsh. Now I met any article, no matter how insignificant, with full and eager enthusiasm.

Though coworkers almost certainly walked on eggsh.e.l.ls around me that first month, I didn't notice. I was so focused on the future-on my next byline, on the next a.s.signment-that I couldn't accurately judge what was going on around me. Because I wasn't able to type as quickly as I once did, I recorded most interviews. When I review them now, I hear an unfamiliar voice asking the questions: She speaks slowly and ploddingly, sometimes slurring her words. She sounds tipsy. Angela, my bodyguard, discreetly a.s.sisted me with stories without making it seem that I needed the help; Paul would invite me over to his desk as he edited, as if teaching me the five W's of journalism all over again.

It took me over a week to finally get to the task of opening the seven months' worth of unread mail and e-mails. I hated wondering what my sources thought when their e-mails bounced back or were never returned. Did they think I changed careers or moved to a new job? Did they care? These questions plagued me as I trudged through press releases and piles of books.

I was convinced that I was fully back to normal. In fact, I told Dr. Arslan as much when I saw him just before my first week back at work. At that point, I was on such low doses of medication that it was almost negligible. As we did every two weeks, my parents and I sat down around his desk.

"I'll ask you this again. How do you feel out of 100?"

I didn't even hesitate. "100," I replied with conviction. Both my mom and dad nodded their heads this time. My mom finally agreed with my own a.s.sessment.

"Well, then, I have to say that you are no longer interesting," Dr. Arslan said with a smile, and with that short statement, he released me from his care. He recommended that I continue on one more week of antianxiety and antipsychotic medications and then stop. I no longer needed them, he explained. To me, this meant that he had made the global evaluation that I had fully returned to health. My mom and dad each embraced me, and afterward we had a quiet celebration over eggs and coffee at a nearby diner.

Although we were in high spirits about Dr. Arslan's appraisal, in reality I still had a long way to go before returning to the person I once was. It's clear now that I was still in the midst of a very imprecise stage in recovery, which Dr. Dalmau and others are studying closely.

"The patients are back to normal, essentially, by family a.s.sessments, by friends' a.s.sessments, and by physicians' a.s.sessments, but they are not back to normal by the same patient's a.s.sessment," Dr. Dalmau explained to me during one of our early phone interviews. "And this lingers for quite a long time. Recovery takes as much as two to three years, or even longer."

Patients may be able to return to work, function in society, or even live on their own, but they feel that they have more difficulty doing the things that had once come organically, leaving them essentially still far away from the person they were before the illness.

Right after I returned to work, Dr. Najjar gave me permission to highlight my hair, because the scar, which prevented my hair from growing back as promised, had finally healed enough to stand up to the harsh chemical treatment. I went to the Arrojo salon in SoHo, near the entrance to the Holland Tunnel, where my colorist streaked my hair a bold blond and a stylist cut wispy eye-length bangs that swooped to the right, covering up the bald spot. She asked how I got the scar, so I shared a bit of my story with her. She was so moved that she spent another hour putting my coa.r.s.e hair (which had changed texture because of the medications) into rollers.

I was feeling like a million dollars as I sauntered down the subway stairway on my way back to Summit until I heard a familiar voice call out my name. I looked around, hoping that I had misheard, to find my ex-boyfriend a few stairs below me. I had not spoken to him since long before my illness.

"I heard what happened," he said sheepishly. "I'm sorry I didn't call, but I didn't think you'd want to hear from me."

I brushed this comment off, we exchanged a few pleasantries, and we said good-bye. This should have been the perfect moment to run into an ex, fresh out of the salon. But it felt destabilizing, and not in a good way. 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.