It has taken me nearly 20 years, but a recent film inspired me to finally write down the story of how I survived meningitis. In The Fault in our Stars, a boy with a prosthetic leg is embarrassed about what a girl might think on seeing it for the first time. She tells him to “get over himself”. So, this is my way of getting over myself. If one person reads this and it saves their life because they seek treatment when they need it, then it’s worth sharing.
So, 1997. I was 18 and studying for A-levels. I ran cross country and 800m for school. I was visiting my boyfriend at Lancaster University. It was Halloween, we had been in fancy dress and my fingernails and toenails were painted silver. I ate a pasty for lunch and then sat in on a lecture. My head started to spin and I felt so sick that I rushed back to halls and vomited again and again. I was convinced the pasty had dairy in it, triggering my severe allergy. We went to A&E. They prescribed steroids, which probably lowered my immune system, and sent me back to bed.
When I woke up, I couldn’t move my feet. There was a purple rash, like little bruises, all over my body. We went to the university medical centre and they said I had flu. The rash was spreading and getting darker. My feet hurt even more. The nurse said it was definitely not meningitis – flu can cause a rash. My neck didn’t ache. I could easily look at bright lights.
Eventually, hours later, they called an ambulance and blue-lighted me to A&E. The pain in my limbs was agonising. They gave me morphine. I was scared, I was hundreds of miles away from home, Mum and Dad were on a cruise, and I didn’t understand anything. Somewhere between A&E and intensive care, a nurse tried to keep me calm. Her perfume smelt amazing. It was Sunflowers, she let me wear some. She tried to share a tangerine. I can remember those smells as if they were under my nose right now.
A doctor put a line into my heart. I was awake and felt that I really shouldn’t be. Another doctor cut a hole in my throat and put me on a ventilator. Sometimes there was too much fluid on my lungs and it felt as if I were drowning. They wanted to take out my navel piercing, but no one could figure out how to do it, which made me laugh. Then they put me in an induced coma and I got to trip on acid legally.
While blood poisoning attacked my body with gangrene, and pneumonia attacked my lungs, I drifted in and out of sleep. I remember thinking I didn’t want to die, and willing myself to stay alive. At one point, my kidneys nearly failed. The hospital accidentally tried to kill me with a food drip containing dairy, but thankfully my mum (cruise cut short) noticed in time. The drugs, somehow, began to work.
At first, I was convinced I’d been in a car crash. I couldn’t talk with a tube in my neck, but I was scared when they took it out that the air would escape. Strangely, I could remember my friends’ phone numbers. I cried deep and joyfully when I talked (well, croaked) to them. My brother wrote me a letter saying he was sorry if he had ever been horrible, and that if I made it through, he would always be nice to me. The support from my family and friends was incredible: I can never thank or love them enough.
My toes were black and hard, and the silver nail polish made them look freaky. One finger was black and like a piece of dead wood. The flesh was black and falling off on my shoulder, my bottom and other small patches over my body. I don’t have a photo of my own feet but they looked similar to this, probably worse.
Covered with tubes and full of holes, I was transferred to a high-dependency ward. The pain was immense, intense and unfair. I have since gone through a 17-hour “back-to-back” labour and run a marathon, and the pain of these pale into insignificance compared with the pain of trying to put my feet towards the floor for the first time.
I had lost around 20 kilos (three stone) and all my running muscles had gone. I plucked up the courage to ask a consultant if I’d be able to run again. Without considering the impact of his answer, he said: “Yes, but you won’t win any races.”
They cut off my dead finger. I watched. I can’t play the oboe any more, but I was never that talented. My writing looked like a five-year-old’s. I got extra time in exams and was told to resit a year at college. I didn’t, but I still got three As and went to university at the same time as my friends. I’m stubborn.
I still drop things a lot: even now my brain thinks my finger is there. When I run, I can still feel it in my glove, and I have the same sensation with my toes. They fell off one by one, once I was allowed home. The nurse would come to change the dressings every day. They stank. It was dead flesh, so of course they stank. I handed my mother two dead toes in the middle of the night. We burned them in the wood burner. What else could we have done?
At first, I walked like a penguin: toes give you balance and a sense of space. I had crutches and a wheelchair for a few weeks. The pain eased, but the scars itched constantly. The wounds became awesome big raised red scars and, for a long time, I hid them. It’s hard to be an 18-year-old girl with scars. I have never worn open-toed shoes since and I am only just learning to be confident enough to show my feet to people.
Other lasting side effects? My pupils don’t respond quickly to light, which is no big problem, but I occasionally look like a heroin addict. Sometimes I am so tired I can’t move – but then I have a hyperactive sleep-allergic toddler, I run 30 miles a week and I’m a partner in an accountancy firm, so, of course, I’m tired.
So back to a very important thing in my life, running. In the Easter after my illness, I jogged a mile of the Pennine Way for charity with my intensive care nurse. I ran on and off in the years that followed, but the words of the consultant stuck in my mind. I would tell myself my feet were still healing; in fact, running probably could have healed them (or me) much sooner.
In 2008, I joined a super-supportive running club and started training again. Something clicked. My first 10k race for the club took just under 50 minutes; in 2009, I broke 40. I’ve won quite a few races since then, too, and been placed in many. I have county medals and I’ve been Sussex Grand Prix road-racing senior champion, my personal bests are 19.23 for 5k, 39.00 for 10k, 65.45 for 10 miles and 1.27.27 for a half-marathon. I rank in the top 100 in my age group in the country for these distances. OK, that’s not going to get me into a GB vest, but it’s not bad. It may have taken me more than 10 years to prove the consultant wrong, but tell me I can’t, and I’ll show you I can, eventually.
Would I be a better runner if I had all my toes and more flexible feet? Maybe: my downhill running is awful as I can’t propel forward safely. But perhaps I wouldn’t have the drive and grit that makes me the runner I am if I hadn’t gone through the experience that I did. Meningitis is a cruel, horrid disease; it kills and it maims. There are so many survivors and fighters without arms and legs, without sight or hearing. There are toddlers and babies who have suffered so much more than I have.
Running again after my son was born also proved to be my salvation, after suffering postnatal depression. It let me be me again. I run for my sanity, but also to inspire my son to be fit and healthy, to motivate him to always do his best and not to be afraid of failure. That love that you never knew existed until you have a child, that love that must have nearly broken my parents’ hearts when they were watching over me in intensive care, so close to losing me – well, that love can motivate you to do absolutely anything.
This year I am running all my races for Miles for Meningitis – an awareness campaign that you can read about here. If you would like to sponsor me, make a donation, or follow my race progress, you can visit my justgiving page here
Please make yourself aware of the symptoms of meningitis, and read about the fantastic work, the charity Meningitis Now does at meningitisnow.org