Friday, May 11, 2007

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....)


Anonymous said...

Well ive always been curious about the mysterious 'A', (where you met etc etc) although would be perfectly understandable if you didnt discuss your love life in manner of famous pop star!

With regard to parents - mine were exactly the same when i was younger, I used to get told off for moaning or feeling sorry for myself! They spoil me now though.
Robyn x

Anonymous said...

Hahaha, that last part made me laugh so much! That is such a typical motherish thing to do! Hehe!
Your parents sound so lovely - strict but caring, just as they should be :) And you're right, their behaviour certainly hasn't transformed you into a quiet, shy, delicate little thing...(luckily)!

Looking forward to reading about many other "chapters", whatever they may be!
Love always xxx

Anonymous said...

Emily, do you celebrate Mothers Day on Sunday as we do in the USA??? If so, take care of your mother. I'll be spending Sunday with my parents and sister and family. My brother-in-law and I will do all the cooking, letting the women relax and enjoy the day.

Love, Randall

Anonymous said...

I'd be interested in knowing your thoughts on your donor, and their family. Realise this is personal stuff though - up to you!

It's Her said...

Funny, our parents attitudes to CF have been different but yet they have the same fundamentals - CF means you are NO different from other people. My parents were always very open about it as they didn't want me to be embarrassed about it, or feel that I myself should hide it. Either way I was encouraged to participate in every way that I could in school and socially too. I turned out fine (me thinks!)

I'd love to know how you and Emmie met/became friends. Perhaps you've mentioned it before, thus I've been reading with my eyes shut. If not, please spill!

Sarah Milne said...

Your Mum is fantastic Em and your should be so proud of each other, as I'm sure you are. Your whole family are amazingly strong and that the fantastic parenting you had is so apparent. I hope I can learn from your amazing family
lots of love to you all
Sarah x x x

Rebecca said...

Just had to comment to say, Adrian calls the kids physio 'fizz' as well! Hehe.

I call it "Physio, physio, physioooooooooooooo!" sort of like the 'Figaro' song, lol. Yes, I'm nuts.

We've always been very open about the childrens' CF, mostly to raise awareness, but partly because we don't want the kids to feel they have to hide it, or be ashamed of it.

We've done a number of newspaper articles about CF, mostly to advertise the CF Calendars (and even did an appearance on Anglia Tonight on TV for it), but also as a thank you to the Teddy Charity for donating Dylan's Eflow, and a more serious 'debate' sort of article which was in the Guardian, which I've never spoken about on the CF boards, but the article is in my blog if anyone wants to read (In the March or February archives).

When the children grow up, we'll leave it up to them as to who they tell about their CF. So far, I don't think Seren really talks about it, but all her close friends know she takes tablets with all her meals. Not sure if they know why, but they're all very accepting of it and although if they ask questions, we answer, it's never a hot topic as such.

I too would be interested to read more about 'A', but then I find every single one of your blog entries fascinating, so I'd be happy whatever you wrote, lol.


Becky, Seren & Dylan xxx

Rebecca said...

Oh, and Seren calls it physio, and Dylan calls it 'shoe-show', bless him. :o)

Tinypoppet said...

"it's never a hot topic as such." I think you have highlighted the most important bit Becky - however each person chooses to deal with it, it is dealt with and we move on with life. Am liking the Figaro stylee thing as well ;) Emily (commenting on her own blog, oops)

Mad Asthmatic said...

just hearing about all the little things that you are doing (all those things that you thought you were never going to be able to do)
what are your longer term plans? now that work is a possibility what would you like to do.
Are there places you would like to travel to?
am i nosy - absolutely. Living with my own lung problems there are so many things that I want to do, I have my wish list and am making it my goal to do at least one big wish every year.

Anonymous said...

Grace calls hers fizzgog! ??

Your parents sound very much like Mark and I, and Grace could probably eat for England. She too is highly intelligent and excels at English, at just 6 years old she has read everything she should have read for the year and reads all Roald Dahl books and talks far too much!

If she is following in your footsteps it certainly can't be a bad thing.

Jac said...

I am familiar with the 'not missing school unless missing arm or similar'. I have my parents to thank for making me realise anything is possible, CF or no CF!

I would like to hear a bit about your time at uni, as I really only got to know you as your course was finishing. Also keen to know more about life after transplant - how it feels, the difference it makes and where you go from here.

Jac xx

Anonymous said...

Can't help but think that talent show/school plays deserve a mention, times when you were channeling your cofidence/talking/singing/performing skills in the right direction!

Claire W (Tiara/mummy c)

Anonymous said...

We want to know more aabout 'A'!!

Anonymous said...

I saw you play Sandy in Grease when you were at school. I remember that the feeling was 'Wow' at the end as it was so good.

C's m in law

Unknown said...

We had a similar way of presenting Jonathan's cf to the world and although friends and family knew it was very much up to Jonathan when he went to school. He unlike you, did not broadcast or talk about it at all. His close friends (ie ones who did sleepovers) obviously knew and accepted creon, physio etc. I did sometimes try and keep him off school when he really was struggling a bit buy he wouldn't have it

Then in 3rd year, aged 14, he volunteered for speech competition and the night before still hadn't prepared anything, despite a nagging mum. He said I'll just talk about something I know. He talked off the cuff about cf - I remember picking him up from school that day and he got in the car, gave me that wry grin and said, 'Well I made 2 teachers and all the girls cry, and I only got 2nd place!'

Just keep blogging and keep us all smiling the way you already do.

Anonymous said...

Keep rabbiting Emily - about anything.
Lindy x

Anonymous said...

Talk about anything you like... but if it has kids tv flashbacks in then all the better. Captain Bucky O Hare - that takes me back!

Seriously though, I would love to hear about how you got into public speaking and advice you could give others - esp how you overcome nerves.

Anonymous said...

sounds like you and i had similar parental attitudes. I was also left in rooms to finish my dinner (no matter how long it took) and not allowed to miss school unless a had a decapitated head. I feel for the kids whose parents wrap them up in cotton wool, how will the children ever know what is "normal"?
Lizzie xxxx

Anonymous said...

Keep just being you, and blogging whatever you please, I think thats waht we all love, besides I think you'd manage to make anything interesting/funny/emotional. You really should write a book. x

Anonymous said...

how can you think your life is not interesting Emily..........There's never a dull moment where you are concerned. I agree with everyone else, just keep waffling, we love to hear from you and isn't it great that you don't have anything serious to report anymore. That has to be a good thing.
take care,

Freddie said...

Hey Em you probably dont remember me, but I had the pleasure of having lunch with you and mum and dad in London 2 years ago now.I met mum in Summer School of Music in Cardiff in 95 I think. Just to say you made me smile with the last bit about Annie and yourself. She does have a neat way of making a point (some would call it subtle, I would call it genius)It was so lovely to see the photos on the other entries and how healthy you and your sisters are looking. Be nice to see one of the "old dear" and John sometime (I'm for it I know). Please keep writing the way you do. It puts my own life in perspective a lot and makes my problems seem so unremarkable. You're some girl for one girl Em. x