It strikes me that how others perceive you has a dramatic affect on how you perceive yourself. My parents have never ever allowed me to feel different, and I was most certainly never allowed to feel “ill”. One of my mum’s biggest fears is that people would tiptoe around me, treating me differently, leaving me out of activities and letting me get away with things due to my illness. They wanted people to get to know me as “Emily” not as “that girl with CF”. Consequently my parents decided not to tell anyone I had CF when I was born. At all. The other main reason for this was they wanted me to have the choice of talking about it to whoever I wanted, whenever I wanted. When I commenced primary school, they informed the headteacher (for safety reasons) but instructed that no one else was to know, and the good woman that she is she kept her word. I merely took my tablets to school in my lunchbox (something that would be grossly frowned upon now with all the health and safety regs) and no one else really needed to know - I could line up, run around in the playground, do PE and every other thing a normal infant had to do at school.
One day on the way to school (which was incidentally nearly a mile from my house, probably what stretched my lungs to be so strong and withstand all the pummeling CF gave them) I was skipping alongside a fellow classmate whilst our mums chatted, and we were talking about cartoons on television. She asked if I watched Captain Bucky O Hare or some such classic, and I replied casually “yes, actually I watch it before school whilst having my fizz” (which was my name for Physio). This left a rather confused friend and an appalled mother with the idea that my irresponsible mum allowed me to sit with a can of coke in front of the TV every morning. I believe she left them with this image for amusement purposes.
As I grew up, it quickly became apparent that I was perfectly happy talking to anyone and everyone about CF, and it became much more public knowledge. But by now I had a reputation for other things, for being good at English, enthusiastic about pretty much everything (whether I knew what it was or not: “I joined the choir today….mummy, what’s a choir?”) and for being undoubtedly the most talkative member of the class. So CF merely became a part of my personality, which people seemed to quickly accept as they already knew I wouldn’t fall apart and break at the slightest cough.
As I say I was never allowed to think of myself as ill. My parents were also fairly strict. Weight gain is a very difficult issue with CF and my parents would not tolerate me not eating at meal times. There was simply no other option. If I didn’t make a good enough attempt, the kitchen door was shut and I was left in there alone till I had eaten sufficiently. Whilst I rather suspect this is not in the CF Trust’s guidelines of how to deal with fussy eaters, it appears not to have done me any harm, and I have never needed any form of artificial feeding (NG Tubes or otherwise) as I am exceptionally talented in the force feeding area. Missing school was an absolute no no, unless I had an arm missing or similar. Again in my opinion good, as I quickly learnt that having CF didn’t allow me to get away with anything, however this also taught me that it didn’t disqualify me from anything either.
I am positive that my parents’ attitude and behaviour has made me the person I am today – all the good and the bad bits. Even the bits which caused me to howl with rage in my bedroom and write viciously about in my diary (well like any child really) don’t seem to have done the long term damaged that at the time I was clearly convinced their tyrannical behaviour would. I suppose I am in a round about way attempting to praise my parents here, but hopefully they won't read it. Particularly my mother as she will become impossible.
Just to ensure her ego doesn't jump too high, I will end with what I find an amusing and classic example which occurred today of why I perceive myself the way I do.
Scenario: Have just picked up my mother to drop my prescriptions into the doctors whilst I hover in the car.
Me: Hello! Did you have a lovely day?
Mother: Yes fine thank you, (serious tone) although I did have to leave work early to go and see the doctor.
Me: (somewhat alarmed) Why is everything ok?
Mother: No, I have had this REALLY BAD rash covering my face for about a month, it’s terribly serious. (proudly) I have been given a real prescription and everything for some important face gel.
Me: (somewhat confused) Really? (trying to be reassuring) I haven’t noticed it at all, honestly.
Mother: (in a fit of indignant rage at said rash not being taken seriously) that is because you are completely involved in your own health and haven’t managed to notice my serious MEDICAL ISSUES!
Cue stupefied pause followed by gales of hysterical laughter from us both.
I love my mum; she really does know how to bring some perspective to ones life.
Now I have finished telling the Harefield part of my story, (and enjoyed telling it) I am looking for other things to write about. Seeing as I am not convinced my life is all that interesting, is there any “chapters” people are particularly curious about? Otherwise, as you may have noticed, I shall just rabbit away randomly about anything and everything (surprised "surely not" faces please....)