She spoke at length about these feelings to Allen but, understandably, kept them hidden from my father. When my parents spoke to one another, they stuck to discussing how I was doing and hardly engaged in any personal or idle chitchat. Every two weeks, however, they reunited to bring me to Dr. Najjar at his office. Each time he would lower my dosages of steroids; next Dr. Arslan would follow suit with the antipsychotics and antianxiety medications, reducing the amounts in tandem with the changing steroid doses. These were uplifting appointments because each time I seemed to progress steadily, and my parents seemed to be getting along better.
Dr. Arslan would always ask the same question: “Out of 100, what percentage do you feel like yourself?”
Every time I answered with confidence, only my blushing face betraying my inner uncertainty: “Ninety percent.” Or, when I was feeling particularly assertive, “Ninety-five percent.”
My father always agreed with me, even if he felt differently. But my mom would sometimes gently interject: “I would say more like 80 percent,” and this was even a stretch, she would later admit.
Though recovery is clearly a relative process (you need to know where you’re coming from to see how far you’ve gone), we would soon get an expert’s view when I attended two evaluation sessions at New York University’s Rusk Institute of Rehabilitation Medicine. I was dreading the trip. Although I was clearly getting better, I didn’t want proof of my continued inability to accomplish simple tasks. But my mom was adamant that I go.
I recall little from the first session because I was too exhausted to be tested. All I remember are the young psychologist’s wide and friendly blue eyes. On the second visit, my mom and dad led me into the Rusk Institute’s room 315, where that same psychologist, Hilary Bertisch, led me into her office. My parents stayed in the waiting area. Dr. Bertisch would later tell me that even at this stage I seemed disconnected from my external world and that I often responded to her promptings so slowly that she wondered if I had heard her at all. In some ways, she said, my behaviors resembled the negative symptoms of schizophrenia: inexpressiveness, blankness, lack of feeling, and monotone and monosyllabic speech.
Dr. Bertisch assessed my concentration and memory by providing a letter cancellation test, in which I had to cross out certain words or letters in a normal-length newspaper article, coincidentally enough. She first asked me to cross out all the h’s. I got all of them, but it took me 94 seconds, which placed me in the borderline impaired range. Then she had me cross out all the c’s and e’s. I missed four of these, and the whole thing took me 114 seconds: borderline again. Then came the hardest part: find each use of and, but, and the on the page. I remember feeling confused and constantly forgetting which words to focus on. Out of the 173, I missed 25. Anything more than 15 is considered “severely impaired.” My speed, accuracy, and concentration were dismal.
She moved on to working memory, which checks the ability to hold information in your mind for a short period of time. She read aloud simple mathematical word problems, which were elementary but that I could solve only at the twenty-fifth-percentile range.
My visual working memory was even worse. Dr. Bertisch presented a picture of a shape for a few seconds and then asked me to draw it from memory. No matter how hard I tried, I couldn’t imagine the original shape. Here I was in the first percentile, the most severely impaired.
My ability to conjure up words from memory was also fairly poor. Dr. Bertisch repeated the same style of test that had been done in April, when Dr. Chris Morrison asked me to name fruits and vegetables, but this time Dr. Bertisch gave me a minute each to think of as many f, a, and s words as I could:
F: “Fable, fact, fiction, finger, fat, fantastic, fan, fastidious, fantasy, fart, farm”
A: “Apple, animal, after, able, an, appeal, antiquity, animosity, after, agile.” (Because I had repeated “after” I got only nine.)
S: “Scratch, stomach, shingle, shit, shunt, sex, sing, song, swim, summer, situation, shut”
Overall, I named 32 words in 3 minutes. Though this was a significant improvement from April, when I could name only 5 words in one minute, the average number of responses is 45.
Yet in other tasks, I had made significant progress. My verbal functioning was now “superior,” in the ninety-first percentile. My verbal abstract reasoning, which was tested by using analogies, such as “How are China and Russia related?,” was in the high-average eighty-fifth percentile. And despite difficulties with basic cognitive functions, I was still capable of complex analytical thinking, which surprised Dr. Bertisch. On a test involving pattern recognition, I got everything correct, though it took me longer than normal to do so. I couldn’t draw an octagon from a visual cue card, but I could make complex leaps in logic. Later she would tell me that the way I presented to people did not match up with what seemed to be going on internally. There was a serious disconnect, and I may have actually been more present than I appeared. I felt this divide too. Often, like at the party and the wedding just a few weeks before, I felt as if my “self” was trying to communicate with the outside world but couldn’t break past the broken intermediary, my body.
At the end of our last interview, Dr. Bertisch asked me what I felt were my most pressing problems. “Problems with concentration. With my memory. Finding the right words,” I told her.
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.47 They don’t have the self-awareness to understand that they are ill. Paradoxically my ability to recognize my own weaknesses was a strength.
This explained why social situations were so rough on me: I was aware of how slow and strange I appeared to those around me, especially people who had known me before my illness. I expressed this insecurity to Dr. Bertisch, admitting that I often felt depressed and anxious in groups. She suggested individual and group cognitive rehabilitation, individual psychotherapy to address symptoms of depression and anxiety, and a young adult group.
In the end, though, I was so unsure of myself that I did none of it. In retrospect, this was a big mistake: there is a window of spontaneous healing in the brain after injury or illness, and it’s best to jump at any opportunity for faster revitalization. Though it’s unclear what role cognitive rehabilitation plays in the recovery from this disease, I would have likely mended more quickly had I done it. But these sessions only highlighted my inner disunity, and I was loath to continue. I never returned for a follow-up. As it was, it took me a year to even decide to track Dr. Bertisch down and get the results of this one group of tests. I didn’t yet have the nerve to face how bad off I really was.
CHAPTER 40
UMBRELLA
I couldn’t help but consider another hospital stay as a step backward in the march toward recovery, so when Dr. Najjar called my mother in late May to say that I needed to return to the hospital for a second round of IVIG treatment, I was despondent. I shuddered to think of the harsh lights of the hospital room, the constant interruptions of the nursing staff, and those awful preheated dinners. To get my mind off it, my father invited Stephen and me to spend the night, something we did at least once a week now, in his shady backyard, an oasis in the middle of Brooklyn Heights. We ate barbecue, drank sangria, and donned sombreros. A string of multicolored Christmas lights roped around the length of the yard, and Ryan Adams played in the background.
I remained silent for a large portion of the night, as Stephen, Giselle, and my father chatted. Whenever they’d try to include me in a conversation, I shook my head and returned to unconsciously smacking my lips together.
“I’m boring. I don’t have anything to say. I’m not interesting anymore,” I kept repeating.
“You’re anything but boring,” my dad would often respond adamantly. It broke my father’s heart to hear me say such things. He told me a few years later, in that same backyard and under those same strings of lights, that he would cry himself to sleep thinking of
those words.
But no one, not even my father, could convince me otherwise. I was dull, no doubt about it. And being boring was perhaps the toughest adjustment to my new life. This was partially due to the antipsychotics, since the drugs I was on are known to cause drowsiness, confusion, and fatigue. Still, my broken brain itself was likely the most significant cause of my new lack of spirit. It’s likely that the electrical impulses between neurons in my frontal lobes were not adequately firing, or they were misfiring and taking longer to get to their intended targets.
The frontal lobes are largely responsible for complex executive functions, prompting experts to refer to it as “the CEO.”48 It only fully develops into our twenties, which tempts many experts to hypothesize that the frontal lobe’s maturation is what distinguishes children from adults. But one thing is certain: the frontal lobes make us creative, human, and simply less boring.
(We know, horribly, what happens when the frontal lobe is impaired because of the controversial lobotomy surgeries practiced in the 1950s and 1960s. One such method, the “ice pick” lobotomy, made infamous by Rosemary Kennedy, was a procedure in which a doctor would peel back the patient’s eyelid, insert a metal spike above the eyeball until it hit the top of the orbit, and then tap, tap, tap into the brain for several minutes.49 This imprecise procedure severed several frontal lobe connections, yielding results ranging from dulled emotions to childish behaviors. Some patients were even rendered completely devoid of serious thought and feeling, much like what happened to Randle McMurphy, Jack Nicholson’s character in the film One Flew Over the Cuckoo’s Nest.)
Although my frontal lobes were perhaps taking longer to repair (as some emerging research shows) than other areas, there was nevertheless improvement. In the hospital, one doctor had described my frontal lobe function as being “close to zero.” I had, at the very least, improved from nothing.
By the end of dinner, I was so groggy that I put my head on the table and slept straight through the conversation until my own snores woke me up. Shaking myself awake, I headed up the steep metal staircase to the speaker dock that held my iPod. I had recently downloaded the Rihanna song “Umbrella,” even though it had been out for a few years and it wasn’t even necessarily my typical style of music. Now her stylized, R&B-tinged vocals wafted through the summer night.
I looked down with fondness at my father, Stephen, and Giselle and swayed to the music, suddenly filled with buoyant energy. The music blared, and I began to move my body to the beat, almost absentmindedly, until I was fully rocking out, maybe not exactly gracefully but nowhere near as stiffly and robotically as I had at the wedding a month earlier. Giselle was moved by the glow in Stephen’s face when he glanced up and caught me dancing so freely. For a long time it had seemed as if I had existed in a walking coma, but now they all saw life in this awkward reggae dance.
Stephen joined me up on the steps, took me in his arms, and twirled me around, as we laughed at how silly we looked. My father and Giselle joined hands and slow-danced to the upbeat song.
CHAPTER 41
CHRONOLOGY
The brain is radically resilient; it can create new neurons and make new connections through cortical remapping, a process called neurogenesis. Our minds have the incredible capacity to both alter the strength of connections among neurons, essentially rewiring them, and create entirely new pathways. (It makes a computer, which cannot create new hardware when its system crashes, seem fixed and helpless.) This amazing malleability is called neuroplasticity. Like daffodils in the early days of spring, my neurons were resprouting receptors as the winter of the illness ebbed.
It was during that dreaded third hospital stay that my true moment of awakening occurred; I began keeping a diary, started reading again, and first expressed the desire to understand what had happened to me. Perhaps because the diary provides physical evidence of my budding self (I can literally read the thoughts of that wounded Susannah), I can in essence begin to remember what it was like to be her, unlike the earlier Susannah from those paranoid diary entries before the hospital, who was more like a figment of a shadowy memory, so distant that she might have been a character in a horror movie. Yet the person I read about in my recovery diary is childlike and prosaic, unlike that umbral pre-hospital self who could, even at her most obscured, be eerily illuminating. Yet, there are surprising similarities between this diary and the journals I kept during junior high school. In each, there’s a stunning lack of insight and curiosity about myself. In place of deep thought, there are dozens of passages dedicated to my body (weight gain in the recovery piece and lack of breasts in the junior high journal) and silly, petty issues of the day (hating hospital food versus fighting with frenemies). I sympathize with this vulnerable, budding Susannah, as I do that preteen version of myself, but she is still not entirely me, as I am now.
I wrote my first entry at the hospital, dated June 3, 2009, while I was receiving the second IVIG infusion. My father, who had stayed with me every morning as usual during that third hospital stay, helped me write, suggesting that I try to retrace my lost time by compiling a chronology of events from my own memory. My list began with “numbness and sleepiness” and ended with “seizure 3 in the hospital.” I had nothing to record after I had bought that cappuccino in the admitting area of the hospital on March 23. In making the list I had also gone back and crammed the words “night at Dad’s house” in between “seizure 2” and “seizure 3,” almost as an afterthought. This line is the least legible, and with good reason: I was still uncertain and ashamed of my behavior that toxic night (as I am to this day), and it showed even in my handwriting.
My writing was still unfamiliar, but it was a far cry from the infantile notes I had made during my first hospital stay. I could now write in full sentences and even use a semicolon. But what is most telling about my list is the absence: there are no memories at all from my time in the hospital.
My father looked over the page with alarm. It was the first confirmation of my profound memory loss. But he hid his surprise and helped me add in some pieces from his own recollection, providing a more fleshed-out version of events. However, there are still clear omissions, which were both my father’s and mine. The gaps are minor but telling, since memory loss can occur not only in brain injury but also with emotional trauma. No one close to me during this time had been spared.
My father indulged in this chronology entirely for my benefit, because he despised speaking of that time. His new motto had become: “To move forward, you have to leave the past behind.” But Giselle would later tell me privately how hard the situation had been on him. He was a wreck. When other family members called for updates, he’d wave away the phone, certain that he would lose his hard-won composure once he heard familiar voices. My brother remembers speaking to our dad over the phone while he was still in school and I was still in the grips of a mysterious illness. At one point in the conversation the only sound James could hear on the other line were deep gulps of air meant to mask the sounds of heavy sobs.
Then there is the private journal, which my father, in lieu of talking directly to me about what happened, decided to hand over to me for my research. These entries allowed me to relive the hospital stay from my father’s perspective. I read and reread every line; there were moments of laughter and solemn times, and then there were passages so heartwrenching that I wanted to race over to him in Brooklyn and give him a bear hug. But I knew better than to do that. “To move forward, you have to leave the past behind.” Though I wasn’t ready to do that myself, I could, at least for his sake, follow his motto when it related to him. My strong Irish protector was, at the heart of it all, a big softie, and his love for me, something that during our roughest times I had questioned, was immeasurable. “All I knew was that she was alive, and her spirit was intact. We had more hospital stays for treatments, doctor visits, and lots of medications to deal with, but my baby was on the way home,” the journal ends.
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.
Brain on Fire: My Month of Madness Page 18