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Lucy S’s story

19th May 2021

Meningitis left Lucy with an acquired brain injury, completely wiping her memory. She was unable to remember her name or anything about herself, how to speak, eat or dress. She’s encountered many more difficulties on her path to recovery, as she recounts here

Lucy S’s story

"9 October 2014 would be a day I would never forget... but in actual fact I don’t remember that day nor the years before; every single detail of my past gone in an instant.

"Four weeks later I wake 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.

Feeling generally unwell

"On 9 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 the sedation that 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 were told to prepare for the worst; that it was likely that I might never wake up and 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 are 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.

No idea I was at risk

"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. With time my speech improved and eventually I could speak fluently again. I also worked with an Occupational Therapist who helped teach me how to shower and dress myself. Because of my brain injury, I now have dyspraxia, which is a brain-based motor disorder. It affects fine and gross motor skills, motor planning, coordination and sometimes cognitive skills, so I have had to find alternative ways to compensate for this. I have also had to relearn basic things that most people don’t even have to think about, from the alphabet to the days of the week.

"After almost a year in rehab the staff thought it was time for me to move on; I had progressed greatly, but they had taught me everything they could. What I needed now was education, but there weren’t any teachers.

"After that I began working with a tutor and then attended an adult literacy class, which helped me learn how to read and write again. It was by no means easy; I had to start with the very basic children’s books and progress from there. Eventually, I was able to read most things and could start enjoying books of my own choice. That’s when I started to read the Harry Potter books. These books enabled me to escape. I became submerged in this magical world leaving my own life and struggles behind; "Sometimes we need fantasy to survive the reality."

"I learned a lot from these books. When I read Hagrid telling Harry, "I am what I am, I’m not ashamed," I learned to never be ashamed. This meant a lot to me as I had always felt ashamed of what had happened to me. Reading this made me realise that there is nothing wrong with being different; that in fact to be proud of it, because it shows I’m brave enough to be myself and not someone else.

Only with acceptance can there be recovery

"Reading these books was and still is what helps me during difficult times. When I read Dumbledore telling Harry that, "Understanding is the first step to acceptance, and only with acceptance can there be recovery," I needed that more than I ever knew. For a long time, I hated what had happened to me and I didn’t want to accept my new life. I would wish for my old life back even though I couldn’t remember it. Reading that made me realise that I needed to forget about my past and instead focus on my recovery; I had no choice but to accept my new life, my new brain and everything that went along with it.

"One day without warning I started to have OCD symptoms. I started to frantically wash my hands until they were raw. Eventually, with a lot of hard work, I started to be able to manage my OCD, but by no means was I cured. Then the coronavirus pandemic hit the world. I became obsessed with washing my hands all over again. I was being tormented by the need to wash my hands. My consultant believes that my OCD is a delayed reaction to Encephalitis. I have been referred to many different places for my OCD but nowhere knew how to help someone with a brain injury.

"Although it has been a challenge physically and mentally to tell my story, I was determined. I’m tired of having to hide my flaws and insecurities. "It makes no difference if you have acceptance from millions of people, not when they don’t mean anything to you." Having the support of those who do matter is what is most important. This journey has made me realise who my real friends are, the ones who have been with me every step of the way throughout my recovery.

"I am hoping that people will read this and remember that not all disabilities are visible. Strangers see me as a normal 25-year-old, but that isn’t the case. If someone has lost a limb or is in a wheelchair, you know they have difficulties; but I have a hidden disability. You can’t tell that a person has a brain injury from just looking at them, and you certainly can’t tell to what extent it affects them. I hope in the future to help people who have also been critically ill, because I know that you don’t just get out of hospital and get back to life as normal. I have struggled throughout my journey and I wish I had someone to talk to then who would have understood. I hope to be able to support others that need it. "Life doesn’t get easier, you just get stronger.” I am also hoping to learn sign language as I know myself how awful it is to not be able to communicate with anyone. Everybody deserves to be heard, even if it is in a different way.

"Life is at times still challenging for me, but this is my story. I was left with a severe brain injury, completely wiping my memory and robbing me of the future I had planned. I won’t let my brain injury define me. Be who you are and say what you feel, "Because those who mind don’t matter and those who matter don’t mind"."