Tanisha, Age 28, Geneva/ London
I never thought I would write about my experience because, to be honest, I’m not sure what really happened. However today (22nd February) appears to be World Encephalitis Day and I thought it would be fitting to share my story about such an unfamiliar yet deadly disease.
Summer 2018, I had packed up my life in London and stopped by home in Geneva before setting off to a new start in Hong Kong (little did I know I was about to embark on a completely different type of ‘new start’). It was a summer filled with emotions, saying goodbyes and hellos, with my sister’s wedding going on and family visiting from near and far etc. As the days were nearing my departure date, I began to feel more stressed and excited at the same time.
See, the problem was that I’m already quite crazy in nature so no one would have suspected any unusual behaviour at the time. Therefore, the early onset of typical symptoms I was exhibiting were only realized in retrospect after the events unfolded
“Do you hear that music? It’s like a flute guiding me…I can hear this song playing all the time, why can’t I turn it off in my head?” → auditory hallucinations.
“Ma, I know the truth now, I know who God is and Abbu is the prophet. Everything makes sense now.” → hyper-religiosity.
“I need to do this NOW! There is no other choice!!” → obsessiveness.
“I can’t feel my right arm… oh my god I literally can’t write anymore! How am I going to teach if I can’t write???” → movement disorder.
“I’m twitching in my lips” → seizure-like symptoms.
I threw up almost 13x in a day for a few days during that period. Enough physical symptoms led me to a first doctor visit. The doctor put me on an IV drip, said it was an infection and it would pass away. I felt a bit better, but as I felt ill again I convinced myself of a truth… “CAN YOU BELIEVE IT? A SCAM doctor in Geneva?! I am shocked that a city like this would even let someone like that in this profession! He gave me fake medicine! It’s him that made me ill! He’s trying to kill me! Better call Saul!” → delusions and paranoia.
I felt the need to inform everyone about this scam doctor, at which point my family decided to take my phone from me because I wasn’t making sense anymore.
My extremely intuitive mother rightfully decided that I was not to take the plane to Hong Kong, and instead I was admitted to the hospital emergency. Unlike many patient stories that I have read regarding being misdiagnosed for mental health problems, I was enormously lucky that the doctors had picked up funny signals from my MRI scan. This meant they knew it was an underlying neurological issue and they quickly put me on anti-viral, anti-inflammatory and anti-bacterial medicine. Through later tests, they were able to rule out that it was not a virus or bacteria, but indeed an inflammation of the brain i.e. encephalitis. Which type of encephalitis was still unknown, but later it would be discovered and for most of us as something entirely unheard of.
My siblings, namely my sister and her newlywed husband, attended to me the first week I was in hospital. Mind you, I literally just met him for the first time. This week was the most arduous for anyone to witness. My parents were prevented from seeing me in such an awful state that can only described as something out of an exorcist film. Inexplicable hateful words, an unrecognizable voice, running out trying to escape from the hospital… all of it. Unsurprisingly I had to be strapped down neck to toe, like a madwoman in a mental hospital. The psychosis stage.
The following stage is called catatonia. This is where a patient becomes unresponsive, unconscious and totally withdrawn from their surroundings. Only very close friends and family were allowed to visit now, though it threw them off course completely, rendering nothing but grief and shock at first sight. No one understood how or why this happened, only that it was happening. What was to come next? How long would I be like this for?
They predicted I would be in the hospital for 6 months, but unbelievably I was only there for one. Why? The incredible doctors of Geneva took to my care and did every possible test including EEGs, MRIs and gynecology exams to try to identify exactly what I was going through and a possible cause. Teams of magical staff members scrutinized my case to get to the bottom of it. After several test results, 3 weeks into the hospital, I was diagnosed with anti-NMDA receptor encephalitis. What a mouthful right? With a sigh of relief, the doctors immediately put me on the Rituximab drip.
When I came to, I awoke to loving people around me. It took me a while to recognize faces at first, but it took me a while longer to realize what more I had to learn. This attack on the temporal lobe meant I had forgotten my ability to speak, read, write and walk, to name a few. I had all types of therapists ranging from speech, ergonomic, occupational, neurological, who all helped me return to a normal life. The appreciation I have for everyone at this hospital, with the best medical practitioners and top-line medicine, is unworldly. Without their support I would not have recovered as miraculously as I did, in the timeframe that I had done so. It really makes you think how underappreciated their services are yet how they save millions of lives.
Science plays one part of my recovery story, but another part I firmly believe in is the spiritual healing I received. Angels. People from near and far, strangers I did not know, people who don’t even believe in God were all praying for me all around the world and believed in my recovery. Candles were lit every night and even animals were sacrificed in my name. Of course there were those people who came to see me Every. Single. Day. Took weeks or months off of work to be by my side. And there are those who came to take care of them too. The power of prayers is really something extraordinary that it is impossible to ignore during such an unfathomable incident.
People always ask me “Wasn’t it scary? To have undergone such a traumatic experience?” The truth is that the real heroes are everyone else around me who had to endure this. I, on the other hand, was wallowing away at nothing but a dream… or rather, one hellish nightmare. I can only come out of this feeling extremely grateful about all the right ingredients that fell into place- the fact that I got ill in my hometown and not in some foreign land, the speed at which I was diagnosed and then recovered, the facilities available to me, the amount of love and support surrounding me. My experience lies more in the after-story. Will things ever go back to normal? Probably yes, but one thing has certainly changed and that will never go away… I am a survivor.
So you can be too.
Spread the word and let people know about this condition.