I have Cystic Fibrosis (CF). In the days before the Internet gave people access to look into these things to find out how they affect people there would be an assumption I was incredibly ill. Throughout school I had to have time off but it wasn’t mostly due to my CF but chronic headaches I used to get, and at times very low motivation – what I now see as early signs of depression I have always battled with, but that’s a story for another time.
It did have an effect on me from a young age when students (and sometimes teachers) would come up to me and say things like “Oh, I hear you have Cystic fibrosis. Ah, such a shame. How long have you got to live?” I was quite shy as a kid and a teenager so I didn’t really have the strength to verbally put them right. Id just internalise it and get angry.
Looking back I understand it was just kids being kids and making assumptions based on the little knowledge they had, lack of general life experience and seeing that I had prolonged absences from school for unrelated CF issues. I get it, although there’s no excuse for some of the things the teachers said.
But it did have a lasting effect on me, particularly as I entered my teenage years and kind of gave me a bit of a chip on my shoulder. The only way I felt I could stop assumptions being made about the state of my health was to be fitter than anyone else. Maybe people would think “how can he be so ill as people told me he is if he is doing all that exercise.”
It was a slow process to start with. I was overweight and chubby in my mid teens due to the steroid tablets I was on for sinus issues I used to have but bit-by-bit I got fitter and thinner. It started from walking my girlfriend home after school to gradually getting on my bike and cycling a few miles.
My dad was organising a bike ride from England to Germany to raise money for the Cystic Fibrosis Trust and asked if I wanted to go. I said “Yes!” Training for that ride gave me a personal goal to aim for, it got me fit being able to cycle 70+ miles and it got me thinner. It taught me the importance of having something to work towards outside of education and work.
After that bike ride I felt it wasn’t enough, I still had to prove that I was capable of doing the most strenuous of challenges. That ultimate challenge for me at the time was a marathon. I gave myself three years to train for my first marathon as I knew I couldn’t run but relished the opportunity to push myself. Other people laughed and ridiculed my new goal but my family were always supportive and believed in me.
I hated cross-country at school having been unfit. I was always the chubby kid at the back running out of puff two minutes into the one mile course whilst others sprinted ahead. I knew I had to do what none of my PE Teachers at school had been able to do and that was learn about pace, breathing, what appropriate clothing to wear and put it all together for one long 26.2 mile distance with a target goal of three years.
I went from jogging around the block for 10 minutes three times per week to running six days a week up to distances of 19 miles. I found I began to love every minute of it. I was doing what others thought I’d never be able to do and doing it well. In 2003 at the age of 20 I ran my first marathon – the London Marathon – in 3 hours 52 minutes. I was actually disappointed I couldn’t get it under three and a half hours.
That desire to prove people wrong carried on through my adult life and into work. I’d be very reluctant to let people know I had CF until they knew I was a runner, a cyclist and had a number of events under my belt. I couldn’t bear people feeling sorry for me in any way or to think that my life was limited and I’m sure others would feel the same in a similar situation.
You want to be judged on what people see before them not what people have heard or based upon some preconception of what your life should be like. Whenever people said I couldn’t do something my answer was to say “I can” and then do it. Actions really do speak louder than words.
Now aged 35 when I look back I can see that I have run 6 marathons (with a personal best of 3 hours 42 minutes in New York), ran countless half marathons and other races, cycled 1000 miles from John O’Groats to Lands End twice (first time in 10 days, the second in 9) and took part in dozens of walking events including climbing Ben Nevis three times.
I know now that the only person I had anything to prove to was myself. I never had anything to prove to anyone in the first place. I have been grateful for that chip on my shoulder – it served a purpose in my youth but ultimately all that counts is my own opinion of myself.
During the last couple of years I have let that chip on my shoulder fall off. I’m still running, going on long walks and doing events (hopefully my seventh Marathon in the near future) but it’s completely on my own terms. That push to be a better person in all aspects of life – relationships, temperament, work better, learn better – it still drives me with a passion and energy but this time it’s for me and those closest to me.
Do what you want to do in life, find your passion, what you’re good at and what gets you up in the morning. But do it for you.
With thanks to Simon for this inspiring piece to kick off the New Year in a positive vibe. You can follow Simon’s journey at his Facebook page, Fighting Cystic Fibrosis, found at facebook.com/myfightwithcf