From the Stage to the Abyss: Living with Herpes Simplex Encephalitis

In 2017, I was young, fit, and full of energy. I worked as a primary school teacher and performed on many stages as the singer of a reggae and ska band. Life felt wide open. I had no limitations, no serious illnesses, and creativity flowed easily – writing songs, playing piano, editing videos, building things. Everything seemed to be unfolding exactly as planned, with a lightness I still miss today.

Something Was Different

That same year I fell ill. At first, it felt like a normal flu, but after a few days, when things should have improved, it only grew worse. The fever rose, I soaked my bed with sweat, and eventually I could do little more than move from bed to the couch and back again. Along with the fever and headaches came an unfamiliar, overwhelming nausea – something I had never experienced before in such intensity. Eventually, I could do nothing at all and texted my girlfriend to come over. From that moment on, my memories dissolve into scattered, image-like fragments.

A Doctor Like an Angel

What happened next I know only from my family’s accounts. I was admitted to a shared hospital room, where the lights and noise tormented me. I could only groan, unable to speak or respond. After my relatives insisted, I was moved to a private room. An MRI could not initially be performed because the pain caused me to groan constantly. The attending physician suspected the rare condition herpes simplex virus (HSV) encephalitis and immediately began treatment.

Looking back, I realize how extraordinarily lucky I was. Just six months earlier, this doctor had attended advanced training in the United States, where new treatment approaches for HSV encephalitis had been introduced. I often wonder what my life would look like today had I not been treated by him.

I remained unresponsive for ten days, with no memory of that time. When I finally woke, I could speak a little and react to my family. Several doctors gathered around my bed and asked for my name – I answered correctly. They asked where I lived – again, I answered. When they asked for my phone number, I replied, “Why the hell do you need that?” They looked at each other in astonishment; they had not expected such a response. My family had previously been told that I would most likely remain severely disabled or might not survive at all.

Although I had awakened, I was far from recovered. I tired quickly, could concentrate only for minutes at a time, and needed constant sleep. After three weeks, I entered inpatient rehabilitation and had to relearn many basic skills. I could no longer write, and many memories were gone. One moment in particular shook me deeply: I saw a piano in the rehab center and sat down to play – only to realize I could not even manage the simplest notes. I had been playing since I was five years old, yet suddenly it was all gone.

I tried to sing the songs I had written and performed on countless stages with my band since the early 2000s. I could not recall a single line. In that moment, I felt as if I had fallen into an abyss.

Rehabilitation was long, but it progressed. I spent three months as an inpatient and another six months in a day clinic, and I continue to receive psychological support to this day. The true challenge, however, began when I returned to everyday life. Only then did I fully realize how many ordinary things no longer worked. I had to relearn countless routines, and whenever I encountered something once familiar, it felt as if a storm raged in my mind- as though old memories were slowly being etched back into place.

There and Back Again

Some consequences of the illness will remain with me for life: mild epilepsy and sudden, overwhelming fatigue. I used to be confident – standing on stage teaches you that but now I often find myself uncertain. Are my memories correct? Did I only imagine that? Because of this, I try to resolve misunderstandings quickly and seek clarity whenever possible.

At the same time, the illness has changed my perspective. I pay closer attention to my needs, pursue my goals more consciously, and move forward step by step. I am back on stage again, and when I occasionally hesitate, my singing partner quietly mouths the opening words of my verse. I have learned that time and energy are limited and that sometimes, less truly is more.

Leave Prejudice Behind

To those affected by illness or hardship: do not give up believing in yourself, even when you must accept that some things will never function as they once did. Hold on to the people who love you, not to things that cannot catch you when you fall.

And to everyone else: be a safe harbor. Many illnesses are invisible, yet they shape a person’s life profoundly. When someone seems “different,” remember – you do not know their story. Openness begins when we meet one another with less judgment and more compassion. Keep your heart open, and your arms as well.

If you would like to share your experience of encephalitis you can do so by submitting this story form.

Story Published February 2026