My time in the hospital
Upon checking into the hospital, I was severely confused and could not advocate for myself. Completing simple tasks, such as dressing myself in a hospital gown, remained a challenge. Despite COVID-19 restrictions, my mum was by my side and supported me through numerous medical tests, including an electroencephalogram, lumbar puncture (also known as a spinal tap), MRI and CT scans, and various blood and urine tests.
Within 48 hours, my doctor suspected AE and promptly put me on a high dose of intravenous corticosteroids. It’s difficult to fully describe the impact of the steroids, but I can summarise it as everything suddenly making sense to me again – and my family were elated to see it.
Recovering from AE
The journey to recovery was not easy: I felt like I had been in a car crash and everything that had happened was an awful dream. I felt like a robot controlling my body for the first time – speech, thought and movement all under shaky manual control. I felt like my brain was being reacquainted with my body. I was delicate with myself during this time, treating myself as I would a close friend. I coined the term ‘patient imposter syndrome’, as I felt like this illness could not have actually happened to me.
I had to put my life on pause following my discharge from the hospital, and was told there was no concrete timeline for healing. Unlike a broken bone, it is very difficult to monitor how a brain is recovering.
The lack of AE research was frustrating. The first case was officially recognised in 2007, and the main thing that is known about the condition is using steroids as the first line of treatment. I would spend days reading every paper on AE that I could find, searching for answers to all my questions so I could unpause my life. I felt comfortable wading through the scientific literature, with reports becoming like bedtime stories. I clung to hopeful statistics and terms such as ‘monophasic illness’, and researched every medication I was prescribed.
I passed the time by going on long walks, listening to music, doing still-life drawings and exercising daily. I was rarely alone, with each member of my family feeling like a different burst of healing energy that I needed to make it through the day. I am eternally grateful to them.
There was a time when I thought I would never be able to process what had happened to me. I could not see this experience ever settling into the story of my life, nor my identity. Ten months on, however, I’ve found that being in the health and science space has been invaluable to moving forward.