My Encephalitis Story

For this post I’m going to do something a bit different…

There are things about myself that I rarely share, nor do I feel the need to share. The origin story of my disability is one of them. There is always a fear that disability origin stories will eclipse the self in all contexts, flattening my life into a neat, narrative arc. Developing my every act into a mine for metaphors and parables, into a “mirror of the human spirit.”

But this time it is important. Not only did the foundations for how I see the world and adapt to my surroundings begin with my experience with encephalitis, but I have a chance to bring awareness to this disease and the uncertainty and upheaval it causes. And through that, help others who might be facing what I experienced 37 years ago as a toddler. Because there will be others like me.

So here it goes…

My name is Julian Taub. I was born and raised in New York City. When I was 2 years old, I contracted viral encephalitis. I don’t remember much from this period of my life. All I know are stories that have been passed down to me. Pieces of a chaotic time.

It was the summer of 1987, a warm Sunday in early July. I was a chubby toddler with chin-length strawberry-blond ringlets. Friends gathered in our apartment, and my parents, who I called Mommy and Abba, brought out a big cake with two candles in the middle. A frozen vanilla ice cream cake, with a horse drawn in frosting on the top. 

Everyone sang “Happy Birthday” and I closed my eyes.

I loved horses. I remembered that a few weeks earlier, my family had taken me to horse stables near Central Park. My eyes had glimmered at the chance to pet the “horsies” and watch them graze. That day had been filled with excitement and curiosity. 

I opened my eyes, and in one big breath, blew out the candles. We filled our bellies with forkful after forkful of cake.

After the party, I ran into the room where my mother was nursing my month-old brother. And I collapsed. I immediately stood up without crying and started hitting my right arm, over and over again. Thwack. Thwack. As if I was trying to wake it up. Thwack. Thwack.

My mother saw my tumble and my parents took me to the emergency room at a nearby hospital. She thought I had banged my arm. After taking X-rays, the on-call doctor returned and said: “Everything looks normal. There are no breakages or tears, as far as I can see. Go see a bone specialist.” My mother called and set up an appointment for the following day.

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Monday: The next day I had a low grade fever. Every light was too bright. I developed focal seizures in my right hand. It would open, close. Open, close. Continuously like a metronome. I looked at my hand strangely. Was I doing that? I wasn’t telling my hand to do that. I didn’t want to do that. The hand kept opening and closing on the way to the specialist, in his waiting room, in his office. Open. Close. Open. Close. He looked me over. Then reviewed the X-rays taken the previous day. His brow furrowed in confusion and concern. He turned to me and smiled, offering me a small vanilla cookie from his coat pocket. “I don’t see anything abnormal in his bones or muscles. I don’t know why he’s moving his hand that way. Maybe your pediatrician will have some answers.” My mother contacted the pediatrician.    

Tuesday: The seizures expanded up my right arm. My hand would still open and close, but now was accompanied by other muscles, other rogue movements. Repeatedly, uncontrollably. One part of my arm would start moving for a while, then suddenly stop, and then another movement would start at another part of my arm. A twist of the wrist, or a shrug of shoulder and release, or a wild flapping, backwards and forwards. Disappearing and reappearing, each time in a new place, cycling through my muscles, like a traveling carnival under my skin. 

The pediatrician examined me in his office. Again, another concerned and confused doctor. He told my parents to watch me closely to see if my symptoms got worse. He gave my parents a referral for an MRI for later in the week.

Wednesday: The seizures now spread to my right leg. Toes curl and uncurl, curl and uncurl. Ankle flexing in every way possible. Knee shaking, thigh clenching or kicking out. Following the same pattern of the arm: one at a time, each location on my leg taking its turn to seize, as if they were all standing in a queue. All involuntarily.

I slept in my parents’ bed that night. My parents found someone to look after my brother.

Thursday: I woke up that morning and my entire right side was seizing. My face, my arm, my leg, my stomach. All in synch now. My right eye blinking rapidly, my right cheek and lip contorting, torso clenching and twisting. My father scooped me into his arms and raced down the stairs with my mother to hail a taxicab. My mother, petite and usually unassuming, body-blocked the first cab she saw in her pajamas. The driver turned white at the sight of my parents, a pale, frightened couple in their late 20’s. My father, broad shouldered and nearly 6 foot, cradling a seizing, flailing, twisting toddler. He let us in. We all sat, tense and terrified, as the driver weaved us through New York traffic to get to the big hospital on the other side of the city.

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At the hospital, I was rushed into the emergency room, placed on a gurney in a hallway and given a spinal tap right there. The doctor tried to distract my parents with small talk: politics, movies, current events, thoughts on Reaganomics, anything to draw attention from the fluid that was being siphoned from a toddler’s spine to a series of test tubes.

I was then wheeled to the pediatric ward, transferred to a bed, and hooked up to an IV drip of antiseizure medicine. The hospital quarantined me for two days. The doctors were puzzled by my symptoms and feared I was contagious. Alone in a single room, with anyone who entered covering themselves in protective gear and minimally touching me. My parents petitioned to be allowed to stay in my room, on account that I was so young. My mother stayed beside me in the daytime, my father through the night. Family friends who came to visit could only view me through the room’s window, like scientists studying an experiment. A stock scene from a contagion-horror film. 

The only time that I left quarantine was for the MRI room. The technicians filled me full of sedatives, but still I fidgeted during the imaging, so my mother crawled in halfway to settle me, her butt sticking out the machine. That night, my father climbed into my hospital bed. My Abba, the son of a baker, who would roll up his sleeves and wear khakis to his finance job, who would often spend evenings holding court among friends, whiskey in hand, bantering about every topic and no topic for hours, was curled in the fetal position around me, his thick wavy hair strewn across the pillow.

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The doctors developed a working theory for my illness: brain leukemia. This theory was kept secret, hidden from my parents and I. In the late 1980’s, doctors were more opaque about their process, withholding information from patients until it was absolutely necessary. Especially with potentially terminally ill, minor patients. Doctors would filter in, glance at my scans, ask questions, maybe give a broad recommendation, not explain themselves, and leave. 

The quarantine lifted once it became clear I was not contagious. My first visitor was the July Santa, visiting all the kids in the pediatric ward with presents. I was confused but happy for the company. He reached into his sack and pulled out a stuffed bunny with a bandaged ear and handed it to me. When he left, my mother joked out loud about how the hospital is the place where Santa brings gifts to little Jewish boys like me.  

During the following two weeks at the hospital, the doctors had spirited debates about the nature of my illness. At first, it was whether I had brain leukemia or viral encephalitis. Then, when the evidence ruled out leukemia, it was which type of viral encephalitis. They never found out. All the tests returned inconclusive. All the same, there are no known treatments for most types of viral encephalitis. I was given herpes antivirals as a Hail Mary. All anyone could do was wait. Wait for me to see what happens. My body, my brain was the deciding factor now. No other option was left.

Once the virus enters the bloodstream, it penetrates the blood-brain barrier, charting its own unique path of destruction through your brain. Feasting on neuron after neuron. Only your immune system to fight back. Your brain swells hot in battle, your body using all of its energy to reclaim every space, every fold, nanometer by nanometer. Clawing your way back from death.  

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My body stabilized after those two weeks and the virus was gone. It left damage to my left motor cortex and hypothalamus. My right arm and leg atrophied and became spastic: there was no signal for them traveling down my spine, no neural current to keep them in shape. My right cheek became slack. I couldn’t control my own internal body temperature.

The day before I left the hospital a nurse came into our room carrying hospital food. After the nurse retreated, my mother pulled back the plastic and broke a dinner roll into pieces, handing me one. I chewed and chewed the roll, but my jaw and tongue were too weak. I started to choke. My mother grabbed me and administered the Heimlich maneuver. The dislodged, saliva-coated bread ball catapulted across the room, hitting the wall. She sighed and held me tight, both of us wondering what the future would bring.  

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A few weeks after I returned from the hospital, I had a fever that spiked to 107⁰F (41.67⁰C). With hallucinations. I woke after trying to sleep through a lower grade fever. There, flying above my bed was a giant purple pterodactyl, and it was hungry. I screamed as it dive-bombed towards me, mouth open and aiming for my neck. “No! Peetree! No!”, I shrieked. I screamed and I screamed at this cartoon dinosaur from a movie I had watched the other day. I screamed until there was no scream left in me. My father burst into my room and picked me up. My mother calmed me down while my father ran a cold bath. I sat in the bathtub, ice water up to my stomach, soaked t-shirts draped around my shoulders, numb-cold clinging to my skin, working  to bring down my temperature. 

This was the last time my temperature swung out of control. Little by little my brain’s homeostatic ability strengthened. I continued taking anti-seizure medicine for another year. Neurology and intensive care were quickly replaced with outpatient physical, occupational, and speech therapy. My mother would bribe me with chocolate to get me to go from appointment to appointment.

I relearned to walk in the Spring, nine months later. There is a home video of my brother and I taking our first steps at the same time. In the video you can see him imitate me, scooting across the floor while favoring his left side, just as I was doing following recovery. Over the next decade, I attended regular physical therapy sessions, checkups with the bone specialist, wore a thick orthotic, had major surgeries on my ankle, and grew.

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I grew like a survivor of encephalitis grows: no roadmap, no relatable experiences from anyone else I met. Even today, after meeting people who recovered from encephalitis, everyone’s story is different, from symptoms to experiences to recovery. Having a disease that’s relatively rare comes with a level of isolation and misunderstanding from those around me. Many people would assume things about me and my body. Once I would explain, the conversation would end there. I could see the fear on their faces that what happened to me might happen to them. Ableism folding in on itself. 

Nor did my parents have any clear guide for how to move forward, what to expect. According to the neurologist, there was only one other case similar to mine in the area at that time, and that child fell into a coma for a year. My parents just put one foot in front of the other, trying to make due, dealing with issues as they arose. My father went back to work. My mother focused on getting me to my therapy appointments. They hoped that the accumulation of steps would eventually build and make a difference. I imagine it was tiring, with very little guarantees. 

Those who recover from encephalitis are survivors, in the most literal sense. And after surviving we then use all of our creativity, all our resourcefulness, to regrow and repattern in ways that we never would have expected. Many people in my life, authority figures, thought that they needed to set expectations for me. I had, at such a young age gone through something that they couldn’t even comprehend. My parents, in turn, experienced something that no one in their  tight-knit community could advise them on. Both survivors and our support systems are pushed terrifyingly far outside any comfort zone with every basic assumption challenged. 

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Yet, having encephalitis at such a young age, there’s no sense of loss. Any feelings of inadequacy come from expectations of how a body ‘should’ work, or comparing ourselves to others, not personal experience. Despite all the pain, all the fear of death and lack of answers, I don’t know what I would be like if this had never happened.

I’m not sure what I’m trying to say, to accomplish speaking about my experience. I know I was lucky. I was young, and I only retained damage in specific parts. I know other people have such varying experiences with encephalitis, with a wide range of symptoms and varying lingering effects. My own experience can never speak for everyone, nor would I want it to. I think that setting definitive categories or expectations around this disease is counterproductive. 

I want people to know that this can happen to anyone at any time. I don’t gamble; My own experience and ‘bad luck’ (so to speak) points to it being worthless. Who would have bet that the blue-eyed toddler with ribbon curls, waving at horses on a bright summer’s day, would endure this over the next months of his life. Wanting control is an understandable impulse, but it’s not helpful to point to statistics and say: “This shouldn’t be happening. We’re too well-off an area, a country; too advanced, too important, too normal. This only happens in other, far-away places. Outside our protective societies; outside our understanding.” Life at that moment is present and visceral and unknown. Though it’s hard and destabilizing, when one’s brain and body are fighting to hang on, we have to stare at the uncertainty clear-eyed and navigate our way through it, step by step. 

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I do think that spreading awareness from the people who experienced encephalitis can help. It’s important both for those surviving this disease, and those around them. I don’t fully know what my parents’ experiences were when interacting with people in their community at that time, but I imagine that it was heartwrenching. The shock and confusion they felt when they were hurled past their expected life paths. Their fears and disbelief bubbling up at random moments throughout the day. The talks among friends, the empty reassurances, the community prayer lists. If I could add to the conversation, currently filled mostly with silences and question marks, with my own history, perhaps others will feel less lost and alone when faced with encephalitis.

I still have no idea how I got sick, how this all started. One theory I have is that the encephalitis was transmitted through a mosquito. A few weeks before my symptoms started, I did have mosquito bites on my stomach. I also was a pretty sheltered one year old. We didn’t travel a lot at that time. But this is just a guess: since I don’t know the type of virus, I also don’t know the possible incubation period, and when I might’ve contracted it. The idea of having mosquito-borne encephalitis resonated with me because, in the years that followed there were cases of West-Nile virus in New York City and I would use West-Nile as a shorthand to explain to people approximately what happened to me. It was a convenient reference, and I started to associate my illness with mosquitos. That still doesn’t make it true and I have no way ever uncovering the real cause. Probabilities and hypotheses don’t count for much here, except for crafting narratives, organizing what I don’t know.    

Recently, I saw in the news that there were outbreaks of encephalitis in New England over the summer. There were public service announcements, curfews, and a lockdown. Something that so few people understood about my life suddenly became national news. If that means that the frequency of the people contracting encephalitis is increasing, what can I do for the next generation of people who will go through what I did? What could I pass down to them from my own experience? What kind of support could I give? I’m still thinking through that.

Featured Image: Left - Myself at 2 years old. Right - Myself today at 39.