Kathleen talks to Meningitis Research Foundation about losing her legs to meningococcal septicaemia and how this has affected her life
It is very difficult to write this almost four years after having meningococcal septicaemia. The way I feel about the experience now is extremely different from how I felt at the time or even in the following first year, or even two. Conveying the rawness of my emotions in the early days and months is something I will never be able to achieve. My experience too, has inevitably incorporated other people’s experiences, especially since I was in a coma for almost two weeks. This entry then, is my experience of meningococcal septicaemia as I feel about it right now. It is an experience which has evolved, and will continue to evolve, has been horrifying and rewarding, caused great heartache and tears and irreplaceable pride.
I had started at the University of Leeds in September 2007. I was having fun, had made many friends and was enjoying life away from home: my first taste of independence. I had danced since I was young and had joined a dance society at university with rehearsals most nights. As the semester drew to a close I was looking forward to my 19th birthday in December.
On 3rd December I had been to a dance rehearsal and felt fine, just tired. I had gone to bed relatively early, having to get up the next morning to attend an important seminar (one I didn’t dare miss!). During the night I remember being delirious, shaking uncontrollably and being sick. In the morning, somehow I dragged myself out of bed and luckily opened my locked door before stumbling out my room into the hall of the flat. The lights were blinding and I just managed to get into the kitchen where, again luckily, a couple of my flatmates were. The next thing I really remember were the paramedics in the kitchen asking what I had been taking and saying I would have to take a trip to A&E.
Sitting in A&E, the two friends who had accompanied me offered me water but I kept slipping in and out of consciousness.
After this my memory is very hazy, (consisting mainly of morphine induced dreams in which the nurses would frequently be trying to kill me, terrifying when I finally woke up properly). I have however, been told of what happened by my parents who ended up staying in the hospital whilst the doctors, and myself, fought to save me.
After we had waited in A&E for almost an hour, one of the doctors had spotted a rash starting to appear on my arm and had taken action straight away and I was rushed to ICU. Multiple organ failure followed and I was placed on life support. After an hour’s drive my parents were confronted with the horrifying news that the daughter who had only left home a few months ago was dying.
However I somehow managed to survive the first 48 hours despite the condition of my heart being described as “shocking” by a heart specialist.
After I had made it out of the most critical stage the doctors were most worried about my kidneys. I was put on dialysis and they feared I may have to remain on it as I just wasn’t weeing! After three weeks in ICU, I was moved to HDU (where I spent Christmas) and then to a kidney ward. This stage of the hospital part of my experience was one of the worst. I was awake most of the time and had a lot of time to think and also to look at the state of my legs, which was horrible because of the effects of septicaemia. It was here that it also turned from 2007 into 2008, New Year’s Eve. The nurses came in at midnight and gave me a celebratory glass of milk (party!) and I remember looking out the window; I could still hardly move at this point 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 was a long way from where I was.
Being told I would lose my legs is to this day 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 were gangrenous and necrotic. Now, I can’t imagine how I coped with looking down at my legs and seeing dead, withered flesh. It is a stark image and one which will stay with me, but not one which causes me much pain. The loss of my limbs, the empty space on the bed where my legs once were, is still emotionally painful to me. It is this sense of loss, which I find hard to comprehend and which causes me the most upset. I remember screaming when the surgeon told me I would lose my legs. I believed I had survived the worst but this news made me realise that meningococcal septicaemia would affect my life forever. I felt it would be a physical hindrance and a daily reminder of this horrific experience I just wanted to forget. I would never dance again. At the time I didn’t even think I would walk again and I certainly never thought I would be beautiful again.
This concept of beauty is something I think about a lot. Before the devastating effects of septicaemia I was very entrenched in the encoded societal views of beauty, those forced upon us by the media. But now I believe beauty can be found in all people, and in all different kinds of forms. There is something very beautiful and very empowering for me, now, to look at my body and see the physical effects of septicaemia and know what they mean: my body is a physical embodiment of overcoming hardship and remaining strong.
After three months in hospital I returned home to my parents’ house to recuperate. My bed had been put down in the living room. I regularly attended physiotherapy in Leeds as we decided to keep all my treatment there at the Seacroft Hospital, where the fittings for my first legs were also done. It is only now that I really appreciate how important these physiotherapy sessions were. Lynn, the physiotherapist there, was, and is, fantastic. Looking back now I never even comprehended not walking again once I realised what was achievable. I was happy to merge my body with the technology if it meant being able to stand tall and walk again.
During this time there were also a number of hospital visits. I went for hormone tests as my hair was falling out. I had a number of weighings and blood tests. But top of the agenda for me was learning to walk! It didn’t take long. I was relatively fit still, just very weak and still only weighing about six stone. Because of my dancing prior to getting ill, my balance and posture were very good. My first pair of legs felt and looked cumbersome. I had imagined I would straight away be walking on legs that looked real and nobody would be able to tell but I was bitterly disappointed. I wanted straight away to be wearing heels and shorts and dancing in clubs but this was not to be the case. I did eventually get a pair of legs which allow me to wear heels but they hurt and so I mostly stick to my “comfy” legs which means I have to wear flats, but it’s a sacrifice I will take to save pain!
I returned to university the following September. Life was very different and it was hard to adjust to the changes. I am immensely proud and it was difficult at first telling my new flatmates what had happened. I felt like they would instantly view me as weaker, but in fact it was the opposite. They were occasionally nervous asking me questions but as we grew closer they would ask things and express how impressed they were at what I had managed to do. Obviously I could no longer dance but 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.
I recently became a befriender with Meningitis Research Foundation and I look forward to helping others affected by meningitis or septicaemia.
As for fitness, it is difficult but I do what I can with the free time I have. Walking great distances can be tough, I suffer from pain and from sweating so my legs slip if I walk more than a mile which is very annoying. To avoid this I bike places rather than walk which keeps me active. I swim and have recently started yogalates which is great for keeping toned and strengthening the muscles. I do miss exercise. I never feel like I am really working myself anymore, never feel completely in control of my whole body as I did when dancing. I can jog very slowly but I would love to be able to sprint and feel that sense of freedom, and my lungs exploding. What I didn’t realise at the beginning of this process is that different exercises require different prosthetic legs but this is very expensive so I make the best of the legs I have, in terms of exercise.
It has taken until this year to begin to regain true confidence. I feel more content with what has happened and especially the way I look and my physical capabilities now.
I have completed my degree and I am now doing a masters. I will continue being active and positive. It is crucial for me to remain so. Having meningococcal septicaemia has been tough but it has given me an irreplaceable insight into myself, my strength of mind, dealing with hardship and also the compassion of others. It is an experience which has added to the rich tapestry of my life.
VIDEO SEPTEMBER 2012