this talk: is about how a rare brain infection resulted in a misdiagnosis and being sectioned under the Mental Health Act - with Lucy Dawson
On the morning of October 13th 2016, my housemate found me at 6am, frantically screaming her name, sat hunched in a ball in the middle of my room, rocking backwards and forwards. The room around me was strewn with my belongings and it was as though I had been possessed.
By the end of that day, doctors informed my parents that I had suffered a severe mental breakdown and that I needed to be sectioned immediately under the Mental Health Act. This diagnosis was completely incorrect.
All I know of the next three months is what I can recall from sporadic, haunting flashbacks, my medical records, and the recollections of my family of my time spent locked in a psychiatric ward. So, what exactly was wrong with me?
Well, I eventually found out in January 2017, four months after I was sectioned. I must admit, when I first heard the words Anti NDMA Receptor Autoimmune Encephalitis, I had no idea what it meant or what it was. Autoimmune Encephalitis, occurs when the immune system mistakes healthy cells in the brain for bad cells and thus begins to attack them – this is known as ‘friendly fire’ – the body thinks it is fixing itself when its actuality it is destroying itself. As the brain becomes inflamed, NDMA receptors become under attack, these NDMA receptors are critical for judgement, perception of reality, human interaction, retrieval and formation of memory and all unconscious activities or autonomic functions such as swallowing and breathing which means that all these things are affected.
I must mention that I was not in a hospital ward, I was in a psychiatric ward. The implications of this were that I received none of the treatments that are necessary for curing encephalitis, in fact, instead I was pumped religiously with psychotic drugs for a fictional mental breakdown – because of this, my brain disease was able to progress for three months, meaning that my body effectively began to shut down and die. Doctors told my mum and dad that basically I was going to die, and they didn’t know why, but as a last-ditch attempt, they could sign papers for me to undergo ECT, or electroshock therapy. By some miracle, by the third round of shocks, I began to have large seizures which somehow must have shook my brain into resetting.
Unfortunately, after my third round of ECT, I was placed back, unattended, in my ward bed. It was at this moment that I had my next seizure, this time convulsing so much that I fell off the bed and onto an open radiator pipe that was directly next to it. Bearing in mind that this was at the end of November, I’m sure you can imagine how hot the pipe was and being that I was catatonic, I was completely oblivious to this, and being that no one was watching or checking me, I remained on this radiator pipe – fully complete with no cage or protection round it, until eventually one of the elderly ladies on the ward noticed what was happening and screamed for help.
Due to the nature of the disease, I was extremely hazy for a long time after first coming around and I still wasn’t actively thinking or processing anything that was happening. I vaguely remember realising that my left leg and foot were not working when I tried to get out of my bed, but at this point I was so unfamiliar with my own body that I wasn’t sure what was right or wrong anyway.
The next two years of my life were undoubtedly the most depressing I have ever experienced, to begin with I couldn’t speak a single word, couldn’t walk a single step, all my memories had vanished, and I could barely recognise anyone that I encountered. I was under house arrest and my parents were scared to leave me on my own in case I had a relapse. For many months I could do nothing other than sleep.
It wasn’t until a chance appointment with a locum doctor that I finally got some answers about my leg. I wish I could have captured this doctors face when I explained to her the full story of what had happened to me and showed her the position of the 10 centimetre third degree burn located on my left buttock. She believed that the burn had been so severe that it had burnt through my sciatic nerve completely and killed it, thus leaving my left leg paralysed from the knee down.
I had become a complete social hermit since my time in hospital, all my friends were well on their way with careers, relationships, houses and the rest and I was very much stunted and behind – I simply couldn’t keep up. And on top of this, I was so psychologically damaged by the trauma of what had happened to me, and the time I’d spent in a psychiatric ward when I myself was not mentally ill had such a damaging impact on my mental state. This meant that in many regards I was terrified to leave the house on my own, my anxiety around crowds of people or lots of noises or bright lights was extremely high and so I would simply avoid ever leaving my bed.
Overall, the events of late 2016 have altered my life forever, I took for granted the life that I had before when really, I had so much to be grateful for. It is such a strange case as one day I was mentally and physically perfectly healthy and then the next I was visibly physically disabled and invisibly physically disabled through the brain injury I had acquired.
It has taken a long time and a huge struggle for me to get to where I am today and there have been months of tears and wishing I had just died in that hospital bed so that I wouldn’t have to go through many of the awful things that I’ve experienced since, but I have to believe that everything happens for a reason and that I am one of the lucky ones who has a second chance at life, and that any of those who have died from Encephalitis would do anything to have their voice back to spread awareness and make noise about the disease. And so that is exactly what I will do from now on.