On Friday I managed my first football team and whilst the result wasn't perfect (we lost 7-2) the team we were playing against were a proper team that knew each other, whilst my team was a bunch of mates and randoms just stuck together. I even got a shot as goalkeeper, but being 5'7"(8") I haven't quite got the height for a keeper. I could barely touch the crossbar while on the goal line, not really ideal for a goalkeeper. Yes, I know I must be a dodgy manager to put a dwarf in goal, but my first choice keeper was having a nightmare and was begging to be taken off. To be honest, I don't think football management is a realistic career move for me, at least not yet.
On Thursday I played footy too. I play at my local sports centre, I say 'play', I tend to walk around the pitch or go in goal, there really isn't any running involved. When you have lungs the size of a packet of crisps it's very hard to run, in fact just to survive the match I have to take pain killers to dull my coughing reflex. Oh....how I love cocodamol! Yes, I know it's addictive, but I only take it for footy - no need for rehab.....yet!
That's one rubbish thing about CF, none of my drugs have a decent street value. I guess I could sell them to third world countries, but I think the large pharmaceutical companies are already dominating that market and shafting various countries in the process. Oooh....I'm being all political.
Anyway, I was planning on telling you about Thursday. As I was saying, I play at my local sports centre. At the sports centre there are specific disabled car parking bays, these are often wrongly taken by non-disabled people. Due to having poor lungs I find getting around tough at times, especially when ill and because of this I have a 'disabled blue badge' which entitles me to park in disabled bays. Anyway, as I was approaching the disabled car parking bays there was one bay left and a car pulled into it right in front of me. I didn't' believe the car in front had a disabled badge so I got out and had a conversation with the driver. There were three guys in the car, I have numbered them man 1=driver, man 2=man2, man3=man3
(me) 'Are you dropping off or parking'
(me) 'Do you have a disabled badge'
(me) 'Well I do, is it possible for me to have the parking space?'
At this point man1 looked me up and down searching for a visible disability.
(man1)'Is the badge yours???'
Man 1 then moved his car, but his two friends man2 and man3 stared at me while I parked. When I got out my car man2 and man3 were standing there, but started walking away. Man2 then spoke,
(man2) 'you don't look very disabled'
(me) 'I've got cystic fibrosis'
(man3) 'well I hope I don't see you running on the pitch'
Some people can be annoying. Whether or not I had been there to ask for the space, these grown men shouldn't have been taking a disabled car parking space in the first place, it makes their questioning of me and my health even more deplorable. Some people!
Sometimes this is the problem with CF, at first glance there aren't any visible problems. On the outside people with CF can look quite normal and I think people find it hard to comprehend that a young person who looks well can actually be ill. For example, on a bus or train there are seats specially set aside for those who need them. If you see an old person, you can distinguish them by the wrinkles on their face, the grey hair or the smell of pee. Pregnant women we can identify by the massive growth on the front of their body and haemorrhoids , but with CF there aren't visible signs of illness. However, if you saw me doing my physio, having a coughing fit, nebulising or with a tube down my nose you might think there was something wrong, it's just I try and keep those things in the home place.
Recently I have done some stuff in the media regarding CF. This has involved being on TV, radio and in the newspaper. For my radio appearances they try to broadcast my cough, for newspapers they want to see my collection of drugs and for TV they try to broadcast my cough and show my huge array of drugs. It can sometimes make you feel like a performing monkey, but sadly performances are needed so the general public realise that I have CF and that there is a problem with me.
All of this has just made me wonder about labels, ones we have placed upon us and also about labels that we choose to display. It made me wonder, are labels good or bad? We use them when we need them and disregard them when we don't. I don't want to be known as a disease, but at other times I talk about CF and use it so people take notice of what I'm saying. I guess it made me think about the contradictions within everyone and more specifically in me. On the outside I look well, but yet I'm not well. Then there are times I want people to know I'm unwell, but yet I don't want to be different and therefore don't want to be known as 'ill' and neither would I want to be known or defined by CF.
I don't know if what I've said is clear, i just hope you get the gist. Anyway, my brain is starting to get mushy, so I'm gonna stop thinking.