Emerging from the Darkness: My Rhombencephalitis Story

 

A Sudden Collapse

In April 2023, life as I knew it changed in an instant. It began with an ache in my lower back—something I brushed off as a minor strain. I even visited an osteopath, convinced I had just overdone it somehow. But the discomfort didn’t ease. Within days, I tested positive for COVID-19, and soon after, the real nightmare began.

I started vomiting and took myself to bed, thinking I needed rest. Instead of recovering, my body rapidly deteriorated. I became weaker by the hour, unable to stand or even walk. Two days later, I was drifting in and out of consciousness my strength slipping away. My family called an ambulance.

 

Acute Necrotising Rhombencephalitis – A Rare and Devastating Diagnosis

I was taken to Hospital, where doctors struggled to understand what was happening. My condition worsened rapidly, and I was placed into a coma. For weeks, my body was there, but I was not.

It wasn’t until I was transferred that the diagnosis finally came: Acute Necrotising Rhomboencephalitis (ANRE), a rare and life-threatening neurological complication of COVID-19. This condition causes severe inflammation and necrosis (tissue death) in the brainstem, affecting vital functions such as movement, speech, and cognition.

 

A Battle Unfolding in Silence – The Hallucinations and Other Lives

While I was unconscious, my body endured plasma exchange therapy and IV hydrocortisone in an attempt to halt the immune system’s attack on my brain. I remained in a coma for just under two months, trapped in a void of silence. My family watched helplessly as I fought for my life.

But for me, the coma wasn’t just silence—it was something else entirely. I lived multiple different lives, experiencing entire realities that seemed as real as this one. These weren’t just dreams; they were vivid, detailed existences where I became different people, travelled to places I had never been, and adopted identities that were completely foreign to me.

At one point, I believed I was a tech and crypto billionaire, living in a world where I controlled vast digital empires.

When my son visited me in the hospital, I briefly drifted out of my coma and tried to tell him all about my billionaire life, struggling to find the words to explain the world I had been living in. It felt so real to me, yet I couldn’t articulate it in a way that made sense.

It wasn’t real—but in my mind, it was as real as anything I had ever known.

Even after I fully emerged from the coma, the line between what was real and what wasn’t remained blurred. I genuinely believed that the world I had woken up to was another hallucination.

It took time for my mind to trust reality again. For weeks, I struggled with the idea that I was truly back, truly alive, truly present in this world.

 

Lessons in Resilience

Encephalitis stole so much from me—my independence, my physical strength, and a sense of normality. But it also gave me something unexpected: a profound appreciation for life.

I’ve learned that recovery is not just about regaining what was lost; it’s about adapting to a new version of yourself. It’s about celebrating small victories, even when progress feels painfully slow.

Most importantly, I’ve learned that survival is not the same as living. Encephalitis is more than a medical condition—it’s a battle that continues long after the hospital doors close behind you. But with determination, the right support, and an unbreakable will, life after encephalitis is still worth fighting for.

To anyone facing this journey: keep pushing forward. No matter how dark things may seem, there is light ahead.

 

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Published June 2025