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Viral Encephalitis Lived Experience — Julian’s Story

Julian shares his experience of viral encephalitis

Julian shares his experience of viral encephalitis

My name is Julian, 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, I only know 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—the day after celebrating my birthday with family and friends. Then, I collapsed. I immediately stood up without crying and started hitting my right arm, over and over again as if I was trying to wake it up.

My parents saw my tumble and took me to the emergency room. She thought I had just banged my arm. After X-rays, the on-call doctor returned and said everything looked normal; there were no breakages or tears. They advised us to go and see a bone specialist, so my mother set up an appointment for the following day.

The next day I had a low-grade fever and I developed focal seizures in my right hand. The specialist looked me over, reviewed my X-rays and said he didn’t see anything abnormal in my bones or muscles. My mother then contacted a paediatrician for his advice.

Treatment

The seizures spread up my right arm and to my right leg. I woke up the following morning and my entire right side was seizing. My parents took me to the hospital and I was rushed into the emergency room, placed on a gurney in a hallway and given a spinal tap.

I was then taken to the paediatric ward, transferred to a bed and hooked up to an IV drip of antiseizure medicine. The hospital quarantined me for two days; puzzled by my symptoms, the doctors feared I was contagious. My parents petitioned to be allowed to stay in my room, considering that I was so young, so my mother stayed beside me in the daytime and my father stayed with me through the night. Family friends who visited could only see me through the window, like scientists studying an experiment.

The only time I left quarantine was for several MRIs, and the quarantine was only lifted once it became clear I was not contagious.

Diagnosis

During the following 2 weeks, the doctors had spirited debates about the nature of my illness. At first, it was whether I had brain leukaemia or viral encephalitis. Then, when the evidence ruled out leukaemia, it was which type of viral encephalitis; they never found out, with all the tests coming back inconclusive. All the same, there were no known treatments for most types of viral encephalitis. I was given herpes antivirals as a Hail Mary. All anyone could do was wait and see. My body and my brain were the deciding factors now.

My body stabilized after those 2 weeks and the virus was successfully treated. It left damage to my left motor cortex and hypothalamus. My right arm and leg atrophied and became spastic: no signals were travelling down my spine; with no neural current to keep them in shape, my right cheek became slack. I couldn’t even control my internal body temperature.

The day before I left the hospital a nurse came into our room carrying 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 manoeuvre. The dislodged bread ball catapulted across the room, hitting the wall. She sighed and held me tight, wondering what the future would bring.

Returning from the hospital

A few weeks after I returned from the hospital, I had a fever that spiked to 1070F (41.670C) and exhibited 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. 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, clinging to my skin, working to bring down my temperature.

Recovery

This was the last time my temperature swung out of control, and slowly 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 learned how to walk again in the Spring, nine months later. There is even 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 favouring his left side, just as I did following recovery. Over the next decade, I attended regular physical therapy sessions and checkups with the bone specialist, wore a thick orthotic, had major surgeries on my ankle and grew up.

I grew like a survivor of encephalitis: no roadmap, no relatable experiences from anyone else I met. Even today, after meeting people who have recovered from encephalitis, everyone has a different story, from symptoms to experiences to recovery. Having a relatively rare disease comes with a level of isolation and misconceptions from those around you. Many people would assume things about me and my body.

There was no clear guide for how to move forward or 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, dealing with issues as they arose. My father went back to work while my mother focused on getting me to my therapy appointments. They hoped that the accumulation of steps would eventually make a difference. I imagine it was tiring, with very few guarantees.

What have I learnt

Those who recover from encephalitis are survivors, in the most literal sense. And after surviving, we then use our creativity and resourcefulness to regrow in ways we never would have expected. So many people in my life, such as authority figures, thought they had to set expectations for me. At such a young age, I had gone through something they couldn’t 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 far outside any comfort zone, with every basic assumption challenged.

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

I’m aware I was lucky. I was young, and only suffered lasting damage to specific parts. I know other people have varying experiences with encephalitis, with a wide range of symptoms and an array of lingering effects.

Where I am now

How can I help the next generation who will face viral encephalitis? What could I pass down to them? What kind of support could I give? That’s something I’m still thinking through.

I do think that spreading awareness can help. It’s important for both survivors 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 can imagine it was heartwrenching. 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 history, perhaps others will feel less lost and alone when faced with viral encephalitis.

 

Some elements of this story have been edited. Julian has shared his full story on a blog post here https://www.juliantaub.com/the-bitwise-malandro/my-encephalitis-story

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Page Created: 16 January 2025
Last Modified: 15 January 2025
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