Recovering from Meningococcal Meningitis: A Rare Patient Story, Part One

Written by Lucy Scott

The 9th of October 2014 would be a day I would never forget… but in actuality, I don’t remember that day nor the years before. Every single detail of my past was gone in an instant. Four weeks later I woke from a coma unaware of who I am, where I am or who any of the people around me are. I don’t recognise any of them. I’m so confused. I can hear every word so clearly, but I can’t understand what any of it means.

What is going on? I am screaming as loud as I can but no one can hear a thing… I’m terrified. I have no means of communicating with anyone; I am completely powerless. I catch a glimpse of another figure that I don’t recognise, but there is something strange about the figure in front of me that is making me uneasy… am I looking at my own reflection? Suddenly everything is blank.

Have I fallen back into a coma? It was a long time before I was able to properly understand what anyone was saying or telling me. But when I finally could, I learned who I am and what had happened to me. On the 9th of October, I had gone for a lie-down, as I had a bad headache and was feeling generally unwell. I had been in bed for around an hour when my dad heard strange noises from my bedroom. My mum went to check on me to find me thrashing around in my bed, completely unresponsive.

She noticed a pale pink spot under my eye and on my toes and called an ambulance immediately. While waiting on the ambulance the spots on my toes started to darken and travel up my ankles. At the hospital, I was rushed into resus where I was stabilised and put into an induced coma. I had contracted meningococcal B meningitis, encephalitis, and septicaemia. I spent twelve days in ICU under constant supervision, followed by four days in medical HDU before being transferred to another hospital that had a specialist neurology unit.

After just six days, I was taken off of the sedation which was keeping me unconscious, but I didn’t wake up. While still in HDU a consultant neurologist came from another hospital to assess me. He asked for another CT scan to be done and put me on a further course of antibiotics. The next day I had the brain scan, and the results weren’t good; it showed scarring on my brain. My family was told to prepare for the worst, that it was likely that I might never wake up, and that I could spend the rest of my life in a vegetative state. Eventually I did regain consciousness, but I would never be the same again.

I was left with a severe brain injury, completely wiping my memory of every single thing I had ever learned from being born until the age of 18. I am unable to remember anything about myself or my past. I know now that the people around me were my family, although I still don’t recognise any of them. I have learned that my name is Lucy Scott, and I am 18 years old. I was living at home with my mum, dad and sister, and had been in my second year at Strathclyde University, studying Education and Psychology. It turns out that one in four 15 to 19-year-olds carries the meningitis-causing bacteria in the back of their throats, compared to one in ten of the UK population.

I had no idea that as a young student, I was at risk of contracting meningitis. Learning about myself hasn’t made me feel any less of a stranger in my own body. I know now that the figure in front of me that I didn’t recognise before was in fact myself, and the thing that was making me distressed was the tube in my nose – an NG tube that was used to feed me when I was too ill to do so myself. After leaving the hospital I was taken to a brain injury rehabilitation centre.

Not long after starting rehab some of my friends came to visit me. During the visit we ate McDonald’s, which I was now totally unfamiliar with – after all, I was still learning how to eat. I went to put the McDonald’s box in my mouth, not realising it wasn’t food. My brain injury has left me not knowing what everyday objects are. In rehab, a speech & language therapist helped me to start to speak again. It was difficult, as I was left with dysphasia, a language disorder that happens when the areas of the brain responsible for turning thoughts into speech are damaged and can’t function properly.

This story is to be continued in Part Two.

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