It was only after getting in touch with Meningitis Now some years later that she realised the disease had left her with an acquired brain injury, leaving her struggling with tiredness, a poor memory and low self-worth. Her dream of becoming an actress had to be abandoned but now she has a new dream, as she tells us here.
“I was 15 and having the time of my life. I had worked hard at school to get great grades. I had an amazing group of friends who I saw regularly and I had so much vitality from my sheer love of life. Each morning my alarm would go off, I would bound out of bed, excited to see my friends and do well at school. I would get a buzz out of doing well and loved doing extra studying outside of class.
“One day I was at school complaining of a headache. I never got sick so this was unusual for me. I got home and we decided it was probably a cold and so I went to bed. My mum recalls checking on me the next day and I complained about the light. This was her indication that it may have been more. She called my doctor to get an urgent home visit while I was then experiencing double vision. He came to see me, lifted my head and I screamed. He suspected meningitis and called the hospital telling them to expect me.
“My mum got me there quickly and a team with a stretcher were already waiting. They took me to a room and my memory consists of just the relief when they blocked out the light. I drifted in and out of consciousness. My mum was told that I may not survive. She says her biggest memory is every time they opened the door to my room, the light would come in and I would scream in pain.
Slowly stepped away from meeting death
“I was told that I did not need a lumbar puncture, which I am very grateful for! Simply because I was far too ill. I was diagnosed with meningitis and septicaemia and for 48 hours I was at death's door. I was unaware of what was wrong with me, and was used to having lots of energy and doing lots of things. So as I slowly stepped away from meeting death, to the point where we could have light in the room, I began to ask the nurses for things to do whilst I was in hospital with a ‘cold’. They tried to explain to me that I was seriously ill, and I would fall unconscious whilst still arguing with them that I wanted a puzzle or something to challenge me.
“Within days I was released from my drip and could move around. I visited another boy with meningitis on request of his mother, as he had given up and she hoped that I would inspire him to keep fighting. I couldn’t understand why he was still in bed. There was a whole ward to explore! However once I’d got to the end of the corridor I would have to stagger back due to exhaustion.
“Once I got home I was skinnier as I had lived off my fat for a week. My mum kept me home from school while I slept lots and tried to find my interest in anything again. I had virtually no attention span. When I was finally released I bounded to school and was hit with a very different reality. My memory had been wiped. I had also missed a lot of school, plus everything now was a struggle. I struggled with my energy levels, staying well and understanding absolutely everything. It was all bewildering to me. I pushed away all of my friends, and I’m not even sure why. But suddenly I was fighting a new battle, one that I didn’t have the capacity to understand or the energy to fight. I was utterly confused. My school reports went from glowing to a constant pressure that not only did I have three months of school to catch up on but I also had to prepare for my GCSEs. There wasn’t enough of me to do both!
Never asked for help
“My teachers had no idea what I needed or that I may have after-effects. One kind teacher took me aside and told me he would help me in any way I needed. I never asked for his help even though I needed it. I just kept telling myself that the doctors said I was ‘recovered’ and therefore I should be able to slot straight back in. I recall losing consciousness during one of my GCSE exams. I woke up to blood all over my exam paper, and my teacher apologising to me, saying I had no choice but to carry on. It seemed like I was just in this constant haze of struggle, and no one could reach me.
“I’m now 40 and I still struggle. I was always told I had made a full recovery, by which they meant no missing limbs, but there have been a lot of things that continued to not make sense to me. I have struggled with persistent tiredness. I spent years working up to 50 hours a week, shifts, nights and eventually I decided to try minimising my life enough to exist on part-time money. I feel more human now than I have done since having meningitis. Although often a day off can be mostly spent in bed if I dare to so much as meet someone for a coffee at the start of it.
“My memory is really bad. But I use my devices and everything on a data cloud to keep me organised. If it’s repeated across my devices, all alarming at me, then I can’t forget. When it’s things like cooking, I can often start something on the hob and then forget about it until I can smell burning. I’ve almost started a fire a few times this way and even done this whilst sat right next to the cooker! My partner walked in that day and asked me why there was a fire behind me. My memory just erases. Which is useful when I experience something I would rather forget. I consciously try to not think about it, and it’s gone. Years ago I documented five years of my life on a journaling website when I was in a particularly dark place. When my life improved I stopped using it and forgot it existed. I found the account by accident one day and was amazed. I had zero recollection of this diary that I had kept consistently for five years.
Couldn’t understand my needs
“I recently tried learning to drive but it was so overwhelming when my instructor would talk a lot. He couldn’t understand my needs so I eventually gave up when I ran out of money to pay for them. Until I learn to drive I can’t be independent and visit friends that don’t live near good public transportation. I worry that I may never find an instructor who can have the patience with me that I need, or enough money to pay for the amount of lessons I may need to gain enough muscle memory to be a good driver.
“My main struggle is my self-worth. Often when I start a new job it can take me longer to learn and it gets commented on. I’ve been told things like ‘I thought you would be better than you are’, ‘Maybe this job isn’t for you’. Although it takes me longer I often end up being one of the best at that job. However, the journey there destroys a part of me. I constantly worry that my colleagues will figure out that I struggle and wish they hadn’t employed me. I have nightmares often that I’ll go into work and they will get rid of me because they found out that I’m not worth it. I feel such a failure. I recently got a job supporting a team with digital communications, which fits me far better. And the team I am in remind me daily that I am valued, so that negative inner voice is finally learning to be quiet.
Not the way I planned it
“My future didn’t turn out the way I had planned. My original dream was to become an actress/singer. Instead I face a life jumping from job to job, getting by, until I retire and then finally die like I was supposed to when I was 15.
“All this time I struggled to understand why I am like this. It is when I contacted Meningitis Now that it was explained to me that all these problems were caused by my acquired brain injury. I felt a sense of relief to know why, but also a sense of sadness as I have struggled for so long and beaten myself up so much when actually I’m different and need to live differently rather than punish myself for not being who I was.
“I celebrate the anniversary of my diagnosis every year by doing something outside my comfort zone. In 2016 I went to Iceland solo, which was terrifying, but also one of the best things I’ve ever done. I connected to the island in a very deep and spiritual way. It seemed to shatter everything I was and created within me, a baby phoenix, ready to become someone who is strong, and grows confidence through the use of intuition, wisdom and trust. My dream is to help others have spiritual adventures in Iceland, find their own inner compasses and release their inner phoenix.”
Clair is happy for anyone in a similar situation to her to contact her if they would like to. “I know mine is a unique story as I’ve struggled to find anyone’s that matches it. Life could have been so much worse and I feel extremely lucky. I really would love to talk to anyone and support them to bypass a lifetime of beating themselves up, like I did. Email Meningitis Now (firstname.lastname@example.org) and we’ll pass your contact details on if you’d like to be put in touch with Clair.