“So how the fuck 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 anticipated.
“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 assignment 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 assignment.
“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’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 class, 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! 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 Yankees–Red 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 hello. “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 assignments, 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 reassess my destinations, but all I wanted to do was keep on moving.
Luckily the 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, documents, and even a paper cup were still sitting there where I had left them.
My first assignments, 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 lackluster 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 eggshells around me that first month, I didn’t notice. I was so focused on the future—on my next byline, on the next assignment—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 assisted 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.
<
br /> 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 assessment.
“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 assessments, by friends’ assessments, and by physicians’ assessments, but they are not back to normal by the same patient’s assessment,” 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 coarse 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.
As I replayed the encounter while I waited on the platform, I caught sight of myself in the oncoming train and noticed how frizzy my curled hair looked, how puffy my face was, and how chubby my frame had become. Would I ever feel comfortable in my own skin again? Or would this self-doubt follow me around forever?
I was nothing like the confident “pre-” person this man had once dated, and I hated myself for how drastically I had changed.
CHAPTER 46
GRAND ROUNDS
Less than a month after I returned to work at the Post, my mother received an e-mail from one of Dr. Najjar’s assistants, inviting us to attend his lecture on anti-NMDA-receptor autoimmune encephalitis at NYU’s grand rounds, the medical school ritual when a doctor presents cases to students and peers.
That late September morning, the commuter traffic was bumper-to-bumper heading from New Jersey into midtown and we were running late. My mom, Allen, Stephen, and I ran to the lecture hall, where my dad, Angela, and Lauren, my friend and the Post’s managing editor, were waiting by the entranceway.
“I think it started already,” Angela said as we entered the auditorium. The hundred or so seats were filled with white lab coats, all intently watching Dr. Najjar, who was onstage speaking rapidly about “autoimmune encephalitis.”
We had missed the introduction of SC, a twenty-four-year-old patient, so I didn’t yet realize he was talking about me as he listed all the tests that had come back clean, including three MRIs, hematology and urine toxicology screenings, and blood work. He added that the patient’s cerebrospinal fluid had higher-than-normal white lymphocytes, and then discussed his decision to move forward with a brain biopsy when they felt out of other options.
“Is he talking about me?” I asked my parents.
My mom nodded. “I think so.”
Dr. Najjar cut to a magnified picture of a biopsied brain sample. It was stained mauve with bluish-purple spots surrounding a blood vessel. The dark spots, he explained, were inflammatory microglia cells.
“He’s talking about my brain,” I whispered, although I didn’t understand then what these slides portrayed. All I knew was that a very intimate part of myself was on display in front of a hundred strangers. How many people can say that they’ve allowed others to literally see inside their heads? I touched my biopsy scar as Dr. Najjar continued to talk about my brain tissue.
He then clicked through to another slide, one that looked like a delicate, chain-link necklace covered with lilac and agate gemstones swooping down in a U shape.
Dr. Najjar explained that the brain biopsy picture showed a blood vessel under attack by lymphocyte cells. As he pointed out, however, there have been only a handful—ten or fewer—of brain biopsies conducted in those with anti-NMDA-receptor encephalitis, so these slides offer a rare and informative look at a sick brain we know very little about.
He ended the lecture with a final statement: “I’m proud to say that this patient is back to normal and is currently back to work at the New York Post.”
Angela nudged me, Lauren smiled, and Stephen and my parents glowed.
When we got back to the office that day, Angela mentioned the presentation to our editors, Steve and Paul. Steve was intrigued and called me into his office.
“Angela tells me that she went to a meeting on your illness,” Steve said. “Would you be willing to write a first-person piece about it?”
I nodded emphatically. I had been hoping my editors would find my story interesting enough for an article, and I was eager to finally indulge my reporting instincts and buckle down to research it.
“Great. Can you get it to us by Friday?”
Today was Tuesday. Friday felt soon, but I was determined to make it happen. It was thrilling, if somewhat frightening and dizzying, to think of sharing those confusing months with the world. Most of my colleagues were still in the dark about what had happened during my extended absence (as, in a sense, was I), and it worried me to think that this story might undo everything I had accomplished in presenting myself as a professional over the past few weeks back at work. But it was irresistible: Now I had the opportunity to uncover that lost time and prove to myself that I could understand what had happened inside my body.
CHAPTER 47
THE EXORCIST
With those conflicting feelings percolating in my mind, I placed my reporter’s cap firmly back on and interviewed my family, Stephen, Dr. Dalmau, and Dr. Najjar to get a portrait of my disease and its larger-scale implications.
What I was almost immediately drawn to is perhaps the biggest mystery: How many people throughout history suffered from my disease and others like it but went untreated? This question is made more pressing by the knowledge that even though the disease was discovered in 2007, some doctors I spoke to believe that it’s bee
n around at least as long as humanity has.
In the late 1980s, French Canadian pediatric neurologist Dr. Guillaume Sébire noticed an unusual pattern among six children he treated from 1982 to 1990.51 They all had movement disorders, including involuntary tics or excessive restlessness, cognitive impairments, seizures, normal CT scans, and negative blood work results. The children were diagnosed with “encephalitis of an unknown origin” (or what was colloquially known as the Sébire syndrome), a disease that lasted on average ten months. Four of the six children made what could be called a full recovery. His hazy description of the disease persisted for another two decades.
An earlier paper, written in 1981 by Robert Delong and colleagues, described “acquired reversible autistic syndrome” in children.52 The disease presented like autism, but two of the three children studied (a five-year-old girl and a seven-year-old boy) recovered fully, while an eleven-year-old girl continued to endure severe memory and cognitive deficits, unable to remember three words provided to her after only a few minutes had elapsed. Now, studies show that roughly 40 percent of patients diagnosed with this disease are children (and this percentage is growing), but children present the disease differently from adults: afflicted children exhibit behaviors such as temper tantrums, mutism, hypersexuality, and violence.53 One parent described how her child tried to strangle her infant sibling; another heard low grunting noises from their normally angelic daughter; and another child clawed at her own eyes to communicate the inner turmoil that her toddler vocabulary could not convey. The disease in children has often been misdiagnosed as autism, but depending on where and when the person lived, it might have been described as supernatural, even something evil.
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