My Experience of Meningococcal Meningitis and Septicaemia
Today I wake up instantly feeling exhausted. My breath stops for a few moments as I try to work out what day it is. I realise it is Wednesday. I could cry with relief. I don’t work at my day job on Wednesdays. My cat, realising I’m awake comes to hassle me for food. I get breakfast for us both. An action which is enough to exhaust both of us into going back to sleep until noon.
I was in school and absolutely loving it. I had boundless energy which I spent on studying until I was getting A grades across the board. Whatever time was left over, I would spend with my friends, dreaming up ways to live life in a silly, weird and wonderful way. My favourite sound was that of my alarm clock. Telling me another day was waiting for me to live and laugh through.
I dabbled in acting and music, dreaming of making a positive impact one day using my voice. I also secretly wanted to be a lawyer, so I could support stopping the injustices of the world. Sweet innocence.
One day I was at school complaining of a headache. I was never ill, so this was very unusual. I went home, diagnosed myself with a cold and decided to take the next day off school. It was this decision that concerned my Mother. Knowing that it would take a lot to keep me away from school. The next day she went to work, but decided to check on me at lunch hour. As soon as she saw me she knew the situation was much more serious. Between the phone call to our doctor and my Grandad coming to take me to the hospital, my symptoms were increasing rapidly. I didn’t have long.
When I arrived at the hospital, a team were already waiting. I remember them putting me in a room and shutting the blinds before the world went black for a while.
My Mother stayed with me, her biggest memory where she heard my screams every time they opened the room door to check on me. Each time the door opened, a sliver of light would enter. This sliver was unbearable. My Mother was warned that I may not survive, and that if she had not checked on me that day, she would have likely found me dead when she came home from work that evening.
As I slowly stepped away from meeting death, I laid in hospital still convinced I had a cold. As I could tolerate more light I began to try to exhibit my boundless self. Asking for puzzles to pass the time, or doing the cognitive tests they brought me. The results however were very different. I couldn’t stay awake long enough to even wait for a puzzle to be brought to me. And I had no idea what 2 x 10 was. For someone expecting to get an A in GCSE maths, this was a bit of a difference.
When I was realised from my drip, I tried again to be boundless. I wanted to explore the ward. However once I’d got to the end of the corridor I would have to stagger back due to exhaustion. I was sent home with the status that I had ‘made a full recovery’. Meaning, I had no missing limbs and was able to shower and give myself food. My brain was left to figure itself out.
My Mother kept me home from school as she monitored the rest of my recovery. A couple of months later, I was back at school to face another reality. The shock was that not only had I missed 3 months of school at a time when we were studying for GCSE’s, my memory had also been wiped a fair bit. Everything I knew about maths, history, French and music was all gone. I was now expected to not only catch up on those 3 months, but also somehow relearn everything I had lost. All along with a reduced capacity of understanding. I had no idea what I was doing.
My amazing group of friends had no idea how to help me. I didn’t know how to help me. I pushed them all away, not able to understand how I was meant to live my life. Worst of all, I pushed away my best friend who was the person that I did everything with and talked to about everything. I couldn’t figure out how to talk to her anymore. So I let her go.
My teachers didn’t know what to do either. One teacher was new and mocked me constantly for being slow. Fed up, I took my old homework books to him after class one day to evidence my brain change. Shocked, he tutored me after class from there on. It would never be enough.
My GCSE’s came. During one exam I had a nose bleed and passed out on my paper. I woke up to a teacher standing over me with a glass of water, apologising that he couldn’t let me leave the chair. I had no choice but to somehow finish my exam paper, which was covered in blood. I had to write around it. A letter from my doctor was sent to the examination boards to explain my illness. Evidence was sent of my previous work, and I was awarded estimated grades as a result. I am not sure what I would have had without the letter.
On the back on these grades I did badly at A levels. Only finishing one qualification with the support of a friend. I then begged for a place in University to study law. It didn’t take long for reality to hit even harder. Everything I had to get me there, was fake. In reality, I had nothing to offer. I was still behind, having barely lived a truly conscious day since my illness.
I’ve spent my life since trying to figure myself and my brain out. I’ve tried many different jobs, moved home a lot, travelled across the world. All with a brain that constantly erases memories and information. My biggest hurt was realising that I may never have a career. Something that I could make a success of, and use to build myself a nice life. In the jobs I liked, I was never valued enough to be invested in or promoted. In jobs where I took longer to learn, managers often regretted hiring me. They thought nothing of saying things like; “I thought you would be better than what you are”. My self esteem has been in shreds. If I got a job I liked, I would have nightmares that my boss would realise how awful I really am, and figure out I’m not worth it, eventually saying something that would stick with me as a forever reminder that my life is a waste.
It took a long time before I started to unpick these false beliefs about myself in relation to meningitis. I started seeing a therapist who urged me to seek the support I should have had in the beginning. I thought she was mad but went along with it. A charity supporting survivors sent someone to come see me. The lady knew enough to tell me that I had sustained a brain injury under this false status of having made a ‘full recovery’. From there on I educated myself in a different way. Supporting myself as someone with a brain injury and not beating myself up for every failure.
I celebrate the anniversary of my near death every year by facing a fear. I want to die with no regrets. In 2016 I went to Iceland solo, which was terrifying but also changed the course of my life. It was like I had finally come Home. Iceland took me in and seemed to shatter everything I was, creating within me, a baby phoenix. Ready to become someone who is strong, and grows confidence through the use of intuition, wisdom and trust.
Ever since that trip I started carving something new. I started training in yoga, meditation and intuitive coaching. A dream began to form. New hope. New friends. New possibilities. I live my life with brave, spiritual eyes, and Iceland in my heart.