Wednesday, November 08, 2006

“Alcoholism is like any disease - you can either go "oh, poor me, it's not my fault I'm being antisocial, it's just because I'm in so much pain/so depressed/whatever" or you can fight it.” - A. Blogger.

Before I start I want to clarify that I cannot take credit (nor reprimand) for the above quote; I found it on an old blog discussion stimulated by the death of George Best. I don’t want to discuss Mr Best and I don’t want to discuss alcoholism. Simply the essence of the sentence which struck me was the bit about disease and how we can use and view it; that we can either use it as an excuse, or use it as a stimulus.

Over simplification perhaps? But reading this sentence suddenly struck me as holding a profound truth which I have been skating around for some time, and seemed to bring together to me an underlying similarity between many different illnesses, in fact not only illness, but group together something I have been trying to vocalize about perspective in relation to events and happenings which are essentially out of our control and therefore can have a profound affect.

To me this sentence actually sums up a lot about what I want to tell people about how I feel about life. To a certain extent, this isn’t a conscious decision. When events like being told I need a transplant or my close call in the summer, I get the urge to rush forward and take advantage of the fact I am still standing by cramming in even more to life than ever before. But some of it is definitely a conscious decision, and can at times take a lot of work, particularly when feeling particularly puffy or simply having “one of those days” that we all have when hiding under the duvet and steadily consuming our bodyweight in jaffa cakes seems like the most attractive option. At these times I find my health can act as a motivational tool, as merely thinking about how much less I can do this year compared to last, and how much harder it will be in 6 months again pushes me forwards to do it now whilst I can.

There are many things in life we can’t control; bad things happen. In an incredibly over simplistic fashion the opening statement says it all: we can hide behind these things, or we can use them to propel us forwards. And I am not just talking about illness, there are many other examples I have seen of people encountering truly terrible scenarios and rising up somehow stronger than before, moving forward and continuing to live their lives.

Take the label “I have Cystic Fibrosis.” Yes, yes I do. But what exactly does that tell you? Just that label on its own, what does that immediately mean I should be excluded/exempted from? The answer is nothing. There is absolutely nothing (as far as I can see) that merely the label of having this particular illness qualifies me for or excludes me from. Obviously the affects on my body which are now so encroaching on pretty much everything I do speak for themselves, but I am still learning every day that we are too quick to assume that something can’t or shouldn’t be done. There is a girl who was in hospital with me who has been using the breas (which is a non invasive ventilator) for several years now, and actually goes cycling whilst using it! Now I would have assumed that should I need to use that I will be bed bound let alone house bound, I am in complete awe, and healthily this has made yet again me reassess my ideas of what is impossible.

My granddad is a marvelous example here too. He is 90, so by all rights could be being rather difficult by now, insisting that people fetch and carry for him, sitting at home quite stuck in his ways. But he isn’t. He goes to evening classes (despite being one of the most learned people I know he is eager to expand his knowledge), he sometimes walks into town. He has some home help and he does a little dusting himself. He recently got a DVD player. He revels in hearing all about his family’s lives and considers himself to be one of the luckiest men alive. When A and I went to stay with him about 3 years ago we took him for a meal to a nearby pub. I pointed out the OAP menu and he commented (totally genuinely) on how useful that was for the older people in the town to which I wondered with slight awe and amusement at what point he would consider himself old!

Someone was talking to me the other week about my “readership” which since installing a counter I have discovered is surprisingly high (well it surprised me anyway). Whilst I am inclined to think that that is my ever faithful family and friends checking it repeatedly every 6 hours or so, there is the possibility that quite a few people stumble across this blog. Anyway my friend was asking me was there a key message I would like people to be picking up from reading my waffle.

I think to some extent there is. Predominantly of course I use this blog to help me get my own thoughts and feelings in line a bit, as some sort of cathartic, cheap, and rather public therapy, and also to keep people up to date with my health and happenings. But everyone wants certain aspects of their character or behaviour highlighted or picked up on, and I was trying to work out how to word my wants. Ultimately it all rotates around the fact that I love my life, and that without my transplant I have very little of it left. I think I would like people to see from this blog that it doesn’t matter how bad things become, or how close to the edge you get, it will never be “all” bad, it will never be “all” hopeless…and it’s not over till it’s over. My tagline is “this is my life and I choose to love it” not because I think that life is just that easy, but because I do believe we have some control over how much we get out of life and the experiences we have.

Obviously it is not as simple as that, nor do I mean my explanation and theory to be. There is far more depth and far more variables which affect both our outlook and the events in our life, but also my actual thoughts on life and perspective go deeper (yes honestly) and are more complex than this hopefully comprehendible outline. For example I don’t think that my way of viewing things is necessarily the optimum for everyone, in fact I don’t think that is the point, it is more the point to find a perspective and be content with it. Fighting doesn’t necessarily mean in order to extend longetivity of life for as long as possible. Nor does fighting it always mean you will win, (or at least you may have to redefine your idea of winning).

I want to enjoy my life because the way I see it, today is the only certainty we have got so I am going to invest my energies into making the most of it. I want to have fun, I want to encourage others to open their eyes and to do so. I want to show that for me at least, there is not a drawn out process I would label dying, because whilst you are alive, you are living. If I want people to see anything, I want them to see someone who was simply living their life, and loving it to the best of their ability.

I wrote the above some time ago when I was still in hospital, but only tidied it up and blogged it today as I am snuffly with a cold (and yes as such equally as pathetic as the rest of the population) and so decided to post this instead of attempting to write anything new and vaguely coherent. On rereading this I am not quite happy that I have managed to convey what I want to say, but I think I shall post it anyway. Thanks to the bloggers who had that conversation which led me to write this stream of thought.


Anonymous said...

Hi emily.. what a great blog , just want to send you all our love , thinking of you always , Alan and your shining star above xxx

Anonymous said...

Enjoyed reading your blog very much, as always. x x
Kate (& Alice upstairs somewhere)

It's Her said...

Hi Emily,

Just have to say that I completely agree with you. After reading that you were saying 'I'm not quite sure I convey what I'm trying to say..' (Not the exact quote I'm sure)I was trying to think of how I'd put it. But words fail me. But I do understand it anyways!
Hope you're well today anyway, despite the cold. Take care,

Rosie, xXx

Anonymous said...

em, that was beautiful, really insightful.

i agree.

lots of love and hugs from yet another cold-infested one
rach xxx

Anonymous said...

"On rereading this I am not quite happy that I have managed to convey what I want to say, but I think I shall post it anyway."

Well, that was quite a stream of thought, and I would think well harnessed. I love it when my brain is chock full of thoughts like that, at least until it feels like an overstuffed turkey. At that point, it is inevitable that a writer will lose some of their thoughts hat they were trying to put on paper. Putting thoughts on paper can sometimes cause new thoughts to arise, and in the end, not everything winds up being harnessed for one's writing.

You did a nice job with that entry though, and I hope it was as meaningful for you as it was for us. Have a great remainder of the day. See you next post.

fpjmask on livejournal and deviantart

Nicola said...

As always your positivity amazes me,mainly because I know you must not feel like being positive some days,but you choose to be.

I hope you are feeling better soon,and have no nasty cold.

Oodles of hugs


Emmie said...

Very profound and interesting post there sweetie. Your blog really is a great read and I'm determined you will get it published one day ;o) So sorry to hear you have a stupid snuffly cold. Sending you the biggest hugs full of sunshine and blue skies to make it go away quickly. I will try to ring you tomorrow evening if you are around.
Love you muchly poppet
MWAH xxxxxxxxxxxxxxxxxxxxxxxxxxx

Anonymous said...

Wow - she is now waxing philosophical; and what a great philosophy it is!! Emily, you are wise beyond your years and an inspiration to the rest of us. Day by day really is the only way to go, enjoying each day as a wonderful gift. No-one knows when it will be their time to move onwards and upwards to whatever awaits us - I expect our next life to be wonderfully free of bodily pain and human mental suffering. Quite fancy the thought of floating around and communicating telepathically....think of the energy saved. However, for the moment we are all here and I just hope pain and discomfort will stop interfering with your enjoying your life to the full. So get well soon. Love as ever, Janet

klics04 said...

what a great blog, it makes you search in your own brain, excellent reading. Take care, gentle hugs and cuddles from Cyprus. kevnles

Anonymous said...

A great start to my day, Miss. Beautiful as ever...and has left me a little choked, but for all the right reasons. I feel lighter do a good job of lifting the heaviness we take upon ourselves. time for some teacakes in the union bar now, and a peaceful ponder on life...(note to self: people may not share my vauge philosophical stance having not read such an inspiring blog and therefore my benign smiling at them as they walk past may induce slight avoidance of me!) thinking of you as ever

Anonymous said...

As a random 'stumbler' I feel truly awed by both your beliefs (and positive actions as a result) but also by your writing skills - for someone who says they don't how to write what they mean, that was beautifully written.

livvy said...

I think you underestimate the amount of people who care about you - far more than you realise. Your determination to make sure you raise as much awareness of CF and organ donation despite your failing health never ceases to amaze me. The cover girl will always be extra special to everyone, which is why you are the cover girl - your outstanding personality reaches out to many and you are and always will be a true inspiration to me. xx much love xx

Anonymous said...

How true! Livvys comment is so true!!! You are an amazing young woman, admired by soooo many! Keep fighting and hope that call comes very,very soon!!!thinking of you, love Diane

Anonymous said...

Yee God's Em,
That was a big one! No wonder it took two sessions.
I think your take on life, the universe and everything is brilliant, muchly inspiring, as always.

Take care chuck, many hugs, say hi to your mum from me too.

Sue xxx

Anonymous said...

Hi Emily,
I enjoy reading your blog, its great keep up the good work.

In our thoughts as always,Love & Support,
Karen & Colin Prior & Family. X

Anonymous said...

Hi Emily

Thanks for your blog. I'd be surprised if your very positive attitude didn't desert you sometimes, but luckily I read your words today, and they were inspirational - and gave me a good and timely kick up the backside.

Anonymous said...

Hiya Emily Rach did her presentation assembley today about organ donation.It went well and feel sooo proud of her promoting like yourself of plight of more organ donations needed to help people like yourself and many others'. Rachs transplant co-ordinator came too which was lovely and seemed appreciated by teh teens at 6th form. Many dressed up as superman/woman :D being a hero by joining organ donor register etc. Was fun but also got the serious message across too.Thanx also for teh supportive message to Rach .

Sending positive vibes and luv to you Elaine & Rach xx......

Anonymous said...

Hi Emily,

I think the way you write about your situation highlights that we all have a certain amount of choice. Your blog title says it all.
I admire your ability to share some of your personal stuff so eloquently. xx