Lucy S’s story

5th October 2016

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
“On the 9th October 2014 I contracted meningococcal B meningitis.” 

"When people hear about meningitis they think of losing limbs, but that didn’t happen to me: instead I was left with a brain injury causing my memory to be completely wiped, which meant that I had no memory of my childhood and everything that I had ever learned. When I came out of my coma it was like being a new-born baby who was going to have to learn everything; but I wasn’t a baby. I was 18-years-old."

“Even though I survived the disease, I didn’t just walk out of the hospital and go back to the life I was living before getting ill. I was left with a severe brain injury which made me unable to remember my name and anything about myself. I didn’t know how to speak, eat or dress myself, and I had lost the ability to read and write. Coming out of the coma, I didn’t know that the people around me were my family – they were strangers to me. I knew I would encounter many more difficulties on my way to recovery.” 

Rehabilitation unit

“After eight weeks in hospital I wasn’t allowed to go home; instead my parents were instructed to take me to a rehabilitation unit for people who have suffered from brain injuries, as I would need intensive rehab before returning home. When I first started my recovery at the rehabilitation centre I was introduced to a psychologist who played me a video to help me understand what had happened to my brain and about the life I was living before. From this video I learned for the first time that I was living at home with my mum, dad and sister Cara. It also taught me that I was in my second year at Strathclyde Uni, studying Education and Psychology.” 

“I worked with a speech and language therapist too, who helped me slowly get my speech back. She also taught me what basic objects were. Being unable to speak was terrifying as your control is taken away from you. It’s very frustrating being unable to tell anyone how you’re feeling, when your voice is only allowing YOU to hear it even though you’re shouting your loudest inside your head!”

Unable to communicate with friends

“After two weeks in rehab I was allowed to go home every day. Being home meant that my friends were able to visit me, even though I wasn’t very keen on this. I was still very ill and unable to communicate with them and I was also afraid of being treated differently and possibly judged. The first time my friends were allowed to visit I was eating a McDonald’s for dinner: I was only beginning to learn how to eat again and had only ever eaten off a plate before, so I lifted up the box to put it in my mouth, not realising it wasn’t food. My brain injury had left me not knowing what basic objects were. No one can realise what all the life experience that you gather though the years teaches you, until it’s gone.” 

“After almost a year of attending the rehab unit my speech had progressed a great deal and my reading was getting there. I worked closely with my Occupational Therapist Lauren. She used a sequencing technique which then helped me to learn how to do basic tasks such as showering and dressing myself. We also worked on essential skills like telling the time and handling money, which I had completely forgotten how to do.” 

Time to move on

“Taking into account how well I had progressed in that space of time the rehab staff thought it was time for me to move on. They couldn’t help me anymore because I needed education and they weren’t teachers. I still had a lot to learn when it came to basic reading, writing and number skills. My goal was to work towards gaining back my independence and working towards eventually going into further education or employment if possible.”

“When I was discharged from the rehab I felt lost. I was referred to a community brain injury team who didn’t seem used to working with people like me. All health professionals didn’t seem to understand my condition: even when I told them that I had lost all my memory of before I was ill, they would still ask me things like what did I like at school. The OT assigned to me told me that I should forget about re-education and learn to live how I am now. But I wasn’t willing to accept that.” 

“With my parents’ help and lots of research, we found a literacy class which gave me the hope that I was needing. But it wasn’t as simple as just relearning everything for me. Having a brain injury makes retaining information very difficult and also makes me incredibly tired. The impact of being critically ill affects me in many other ways too: I have awful headaches, stomach pains and general body aches.”

Hard to ask for help

“Since being ill I have found it hard to ask for help. I don’t know if it’s because no one would know that I have been ill, or maybe it’s just difficult for me to accept that I still need some help now and again. I don’t want people to treat me like I’m stupid but I would like people to recognise that I am still recovering therefore I’m not a genius.”

“It’s very difficult when I’m out socially to try to act like who I was before, as I don’t even know who that was. Because I look and seem normal people don’t realise that it might take me a little longer to process questions, especially when it’s not what I’m expecting them to say. So, if you’re out and see someone who looks normal struggling, try to remember that not all disabilities are visible.” 

“I am unsure what the future holds for me at the moment as I don’t know what my capabilities will be. So all I can do at the moment is work hard to regain some of the skills and knowledge that I have lost in the hope of being able to go into a job that I would enjoy.”

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