Kathleen, Meningitis Research Foundation, United Kingdom
I started at the University of Leeds in September 2007. I was having fun, had made many friends and was enjoying my first taste of independence. I had danced since I was young and joined a dance society at university. As the semester drew to a close I was looking forward to my 19th birthday in December.
On the 3rd of December I had been to a dance rehearsal and went to bed relatively early, having to get up the next morning to attend an important seminar. During the night, I remember being delirious, shaking uncontrollably and being sick. In the morning, I dragged myself out of bed and opened my locked door before stumbling into the hall of the flat. The lights were blinding and I just managed to get into the kitchen where, luckily, a couple of my flatmates were. The next thing I remember is the paramedics asking what I taken and saying I would have to take a trip to Accident and Emergency.
After we had waited at the hospital for almost an hour, one of the doctors spotted a rash on my arm and I was rushed to Intensive Care. Multiple organ failure followed and I was placed on life support. My parents were confronted with the horrifying news that the daughter who had only left home a few months ago was dying.
I somehow managed to survive the first 48 hours despite the condition of my heart being described as ‘shocking’ by a heart specialist. My parents were told twice that there was nothing more the doctors could do and I was most likely not going to make it. Somehow I survived, maybe it was my age, maybe because I was fit, or given a new trial drug but I made it through that critical stage. However, after I had made it out of the most critical stage, the doctors began to worry about my kidneys as they had failed. As well as this my legs were completely black because of the effects of septicaemia and my body was covered in big scabs.
I was put on dialysis and they feared I might have to remain on it for life. After three weeks in ICU, I was moved to HDU (where I spent Christmas) and then to a kidney ward. This stage of my hospital experience was the worst. I was nearly always awake and had a lot of time to think and to look at the state of my legs, which were horrible.
I remember looking out the window on New Year’s Eve. I could still hardly move and could hear the fireworks but not see them. I thought about all the happiness and positivity that was being celebrated at that moment and which felt a long way from where I was.
Being told I would lose my legs is still the hardest moment I have encountered. Initially, the plastic surgeon thought it would just be my toes and heels, but as the time went by my legs showed no sign of improvement and became gangrenous and necrotic. As he told me I remember screaming out loud. I didn’t know anything about prosthetics at this point, I didn’t think I would be able to walk again let alone dance.
Now, I can’t imagine how I coped with looking down and seeing dead, withered flesh. The loss of my limbs, the empty space on the bed where my legs once were, is still emotionally painful to me. I believed I had survived the worst, but the surgeon telling me I would lose my legs made me realise that meningococcal septicaemia would affect my life forever. I would never dance again.
After three months in hospital, I returned to my parents’ house to recuperate. Top of the agenda for me was learning to walk. I regularly attended physiotherapy and was happy to merge my body with technology if it meant being able to stand tall and walk again. It was horrible to have felt so confident, so free and be hit by this disease so hard that I weighed 5 stone, couldn’t get out of bed and relied completely on my parents to carry me to the toilet, wash me, and do the simplest of tasks I had once taken for granted.
I returned to university the following September. Life was very different and it was hard to adjust to the changes. While I could no longer dance, I attended rehearsals regularly and helped with choreography. I also took up photography and art and helped to set up a disability society in the university.
It took me a long time to begin to regain my confidence. Now I feel more content with what has happened and especially the way I look at my physical capabilities but to begin with I was scared about meeting new people, telling them about my legs and nervous about going out. I don’t view this in the same way now, prosthetics are a part of my daily life and I am happy to talk openly about what happened and my disability. People need to learn about this disease and that disabilities are normal and should be accepted.
Now I am working as a journalist at the BBC after gaining a place on their trainee scheme. Looking back it amazes me to think how far I have come. There have been low points definitely, and having meningococcal septicaemia made me question things and go through things that I believe nobody should have to go through. This disease is horrific, it needs to be fought and I am a firm believer in circulating a vaccine that is already available. That there has been any opposition to this is baffling to me. However tough it has been, having meningococcal septicaemia has given me an irreplaceable insight into myself, my strength of mind, how I deal with hardship and also the compassion of others. It is an experience that has added to the rich tapestry of my life.
Kathleen is a befriender and regional Ambassador with Meningitis Research Foundation in Bristol, UK.
To read another personal meningitis story from around the world, click here.