Emerging from the Darkness: My Encephalitis Story
By Eldon Lake
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 Rhomboencephalitis – A Rare and Devastating Diagnosis
I was taken to Frimley Park 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 to St George’s Hospital in London 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.
ANRE is exceptionally rare, with a high mortality rate. Studies suggest that the majority of those diagnosed do not survive, and those who do are often left with severe disabilities. The fact that I not only survived but have made significant strides in recovery is nothing short of remarkable.
The severity of ANRE was highlighted in the case of Derek Draper, the husband of ITV’s Kate Garraway. He contracted COVID-19 in March 2020 and developed similar brain complications. His battle became widely known, shedding light on the devastating effects of post-viral encephalitis. Seeing his struggles made me realise just how fortunate I am to have come this far.
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 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.
My mind took me to places I can’t even begin to explain. I travelled, I built empires, I lived in different eras, and I questioned the very nature of reality.
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.
I vividly remember my wife pushing me in a wheelchair around the hospital at Frimley Park and me turning to her and asking, “Is this real, or am I still dreaming?”. I wasn’t convinced I had returned to reality—I thought I was still lost in another hallucination, trapped in yet another version of myself.
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.
A Fighter’s Mentality – Leaning on My Past to Push Forward
This wasn’t the first time I had faced a battle to regain mobility.
In 2019, just after my 50th birthday, I suffered a right-sided brain haemorrhage stroke that affected my left side. I had to relearn to walk, build strength, and regain control over my body. That experience was brutal, but it taught me something invaluable—how to fight back.
Having a sports background helped me in ways I hadn’t realised until I faced encephalitis. Years of training, pushing through injuries, and focusing on recovery techniques meant that I already had the mental resilience and discipline needed to overcome obstacles.
More importantly, my experience as a coach gave me a deep understanding of the power of visualisation and repetition. I knew that to rebuild lost skills, I had to retrain my brain—just like an athlete perfecting technique.
I also understood the central nervous system (CNS) and how neural pathways are reinforced through repetition. Just as I had taught athletes to refine movements through practice, I had to apply the same principles to myself.
Even when I physically couldn’t move, I mentally rehearsed walking, lifting objects, and speaking fluently. This wasn’t just wishful thinking—science backs it up. Neuroplasticity—the brain’s ability to rewire itself—relies on repeated exposure to an action, whether real or imagined.
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.
Father. Husband. Coach. IT Professional. Stroke & Encephalitis Survivor. Passionate about technology, data, and automation. Helping others navigate challenges and embrace resilience.
My moms story
A comeback is possible
Help with rehab at home after acute phase of autoimmune encephalitis for my 16 year old
Hi everyone ❤🧠 
How to accept or come to terms? 
