Drowning

I gave up on Ulysses. I caught the drift, and didn't feel like putting up with another 600 pages of it. Life is too short!

So instead I picked up 'The Drowned World' by JG Ballard. Another possibly pretentious escapade, but at least science fiction is fun! (And I like Ballard, all his books seem so interesting...)

I've only read maybe, 50 pages, but already I love it. This is from the blurb:

"Fluctuations in solar radiation have caused the ice-caps to melt and the seas to rise. Nature is on the rampage. London has been transformed into a primeval swamp, and within its submerged landscape giant lizards, dragonflies and insects compete for dominance. Human fertility is in decline and buildings sink beneath waters infested with decaying matter. Into this wasteland a group of intrepid scientists venture to record the flora and fauna of this new Triassic Age. Soon, ghostly voices haunt their waking and nightmares permeate their sleep..."

Fantastic, huh?

It's a proper dystopia, and despite the cause of this 'global warming' being rather far-fetched, it's a scarily accurate pre-emptive and haunting vision of what's happening to our planet, and what it could become... There are lots of giant bugs, and that in itself is pretty bloody horrifying. He wrote it in the early 60's - spooky.

Anyway, I want to share this paragraph - of course my life and the protagonist's couldn't be more different (duh), but this little snapshot of thought seemed to resonate. Transplant stuff (did you expect anything else!?).

I seem to be caught in this odd form of withdrawal - it isn't unpleasant, far from it. It is strangely calming. I've described it as a bubble before, and it is. It just seems to be becoming larger and noticeably quieter. I don't want to make this looming 'metamorphosis' bigger than it actually is, but it's quite an interesting way of putting it. Things will have to adjust, things will have to change, and I suppose in a sense i'm preparing for this 'radically new environment' by distancing myself from my previously normal(ish) life, whether I was aware of this or not. I think i'm going to be spending a lot of time in this new 'internal landcape', re-adjusting to a life where things i've known before will suddenly become obsolete. Like the whole process of calculating insulin and creon - things that pretty much determine how I live my life, what I eat, what I can do, where I can go - suddenly i'll live my life (in parts) ungoverned by these rules i've seamlessly built in. It'll be so liberating, but I can imagine it'll be weird! Maybe by withdrawing i'm also just getting used to a sort of loneliness or isolation or boredom that soon i'll have no control over, as I lay stewing in crumpled clammy bed sheets hooked up to drips and lines and beeping machines. With messy hair. 

Today is 6 months on the waiting list. So much for 3 months eh! Pah! I don't know if it's gone fast or slow... I couldn't say. It's all a little mushy and formless. Sometimes time flies past so incredibly quick that I blink and suddenly realise the leaves have transformed from a luscious summery green to that luxuriously melancholy autumnal red. Other times, days couldn't drag by any slower, and every hour seems to stretch into an everlasting and bitter reminder of time's slow, cruel passing. Then all these moments blend together, swirl and dissolve into a jumbled and incoherent timeline of... nothing much. It's. so.     bloody.          odd.   

I think Ulysses and it's modernist ways have caused some form of brain damage. Damn you Joyce and your time altering powers! Hate to think what 600 more pages would've done...                    

NATIONAL TRANSPLANT WEEK

Transplants are, luckily, something most people never have to think about. I never thought about transplants or organ donation much before a few months ago, despite having CF.

But now i've been whooshed into this world that revolves around transplants, I feel like I really need to share how important it is.

It's understandable that talking about becoming an organ donor once you've passed away is a pretty intimidating thing. No-one wants to talk about, let alone even acknowledge their mortality. It's all a bit dire. So it gets pushed to the forgotten regions of your brain, while you then continue to live your life to its fullest. And so you should! Everyone should!

Everyone, including people who need new organs to live. So don't forget about it just yet. All it takes is to say to your loved ones, your family, that if something should happen, please let my organs be re-used! Sign the donor register! Live your life to it's fullest, then let someone else live theirs to their fullest too.

Organ donation is such an incredible thing, extremely life affirming, and really shows just how amazing human beings can be. The world isn't such a bad place when strangers give other strangers the biggest gift anyone can give.

Notch up your bravery, confront your mortality for 5 seconds and sign up for a donor card, tell a family member your wishes for after you die. Then you can forget about it. But at least you know that by doing that, you're probably going to save and dramatically improve someone's life.

It's not scary. It won't affect you when your alive.

SO CLICK THIS AND DO SOMETHING AMAZING!

And for everyone on the list, I hope you get your life changing call SOON! (This week would be super cool, non?)

DO IT!

A check up

Had a 'waiting for transplant' check up at Addenbrookes today. First thing, it's unbelievably quick to get to Cambridge from where I live, which is always mighty re-assuring! At the beginning of this process I kept having nightmares about getting THE call and not being able to get there soon enough and missing the organ. Shudder.

There is one thing that does worry me however - I was told that if i'm on IVs and I get the call, they won't go ahead. Ah! I knew keeping my lungs well was important, but didn't quite realise it was that serious. I haven't had any IV antibiotics since december, and my chest has been pretty tip-top since then. Just got to hold up for a little longer. Sometimes the Brompton piss me off, because they maintain their stance that they won't overload me on antibiotics "because it might damage my liver." (Insert another raised eyebrow.) This may seem blunt, possibly short-sighted, but I don't care! I'm getting a new one anyway - but I won't if you don't ply me with drugs! I understand where they're coming from ie don't know how long i'll be waiting, but it's just a little frustrating. I don't want to miss my opportunity. I'm a B+, so only 8% of the population is compatible. Take away another 3% due to size. That isn't a lot of matches...

So i'm keeping well clear of the Bromp. And public transport. And anywhere there may be bugs. In fact, tomorrow I start making one of these:

Bubble Boy!

The doc also seem surprised when I told him how excited I was. Apparently no-one has ever said they were excited... Am I just odd? I know how people can be scared, apprehensive... yes of course i'm a bit of those, it's a major thing. But surely people must get excited at the thought of what new and wonderous life is waiting just around the corner! The odds of not surviving is 1 in 6. That's daunting. A game of Russian Roulette. But surely the allure of playing Russian Roulette is the excitment? I'm slightly tentative comparing it to that, because you probably all think i'm a lunatic adrenaline junkie. It is different though, because a gift of a prolonged, vastly improved life is what i'm gambling all for. And for that, it's a risk i'm willing to take.


P.S. I'm hoping they just gave me that statistic to stop me from wanting new organs... 3 organs must mean a lot of work for the poor surgeons. It'll be a long night for them! I'll be fine somewhere far far away in a drug induced cuckoo-gaga-land...

Limbo

Waiting for a transplant is a lot like being suspended in limbo. The poet Coleridge beautifully wrote that Limbo is "positive negation" - an existent nothingness - it exists yet it is a hollow void, where time stands still and life does not proceed.

   Tis a strange place, this Limbo !--not a Place,
   Yet name it so ;--where Time & weary Space
   Fettered from flight, with night-mair sense of fleeing,
   Strive for their last crepuscular half-being ;--
   Lank Space, and scytheless Time with branny hands
   Barren and soundless as the measuring sands,
   Not mark'd by flit of Shades,--unmeaning they
   As Moonlight on the dial of the day ! ...


There isn't much I can do until I get my call. And not knowing how long you're going to have to wait casts an un-easy and slightly un-settling shadow over the whole thing. It could be NOW, it could be in a month, could be 5, 7 months... a year? How do you plan for that? A proper job is out of the equation, holidays are a no-go. So you wait. Someone pressed pause on my life remote. It IS a strange place Mr Samuel. A strange un-place. Weary, lank, barren and soundless. I imagine this is how a ghost might feel. Occupying a space yet not really there, never aging, simply existing. But of course, unlike a ghost who's immortal time is never ending, at least I know one day this phone will ring, and suddenly time and life and the here and now will burst into motion - someone will have pressed play and Coleridge's soundless barren nothing will be replaced by a deafening "HOLY SHIT!" Never has a silent phone seemed so loud. It is the biggest thing in my life at this moment. At times I forget about this whole weird palaver (transplants are weird. Good, but weird) but when I catch a glimpse of the now pink day-glow monstrosity that is my phone, I think my heart does a little serendipitous jump of joy. I can only equate it to what Christmas eve feels like when you suddenly remember Santa's on his way (eek yay!). The excitement stops both my heart and my breathing for a second, sometimes so strongly to the extent that I hope I won't be needing any of those organs added to my list... just yet. Two is quite enough! (and the bit of gut, don't forget the gut...). In plain english, it's exciting. Coleridge - MY limbo is exciting! Yes quiet and frustrating, but I just know that soon it'll give way to the most important and amazing thing like, EVERRR.

So this silly pink phone never leaves my side. I've turned into one of those chicks who are ALWAYS holding their phones. I know it's far from lame, but it feels really lame. If I ever go clubbing (not likely given my current physique and health) I would be just like those annoying people that are glued to their phones throughout the whole night, twittering or texting or writing a facebook status "omg i'm so drunk i'm having the best time EVER". LIES. Get off your phone then? Anyway, that won't happen. But I just wish my phone would hurry up and ring so I can eventually get back to Oceana.


I'm kidding. Anywhere but Oceana. Even limbo - no, even Hell would be better.

(I could make a pun about going clubbing at Heaven, but i'm just not.)

I have succumbed

According to this little gadget I have on my google homepage, i've been waiting for a liver and a pancreas (and a little bit of gut - don't forget the gut!) for 49 days. The first 2 weeks flew by, but now it's like time has decided to play a cruel and torturous joke on me and go as slow as it possibly can. This gadget is also telling me it's been 32 days since i've had a McDonalds, which is worrying me. Pretty sure i've never gone that long without a MaccyDs before. At school I used to have McDonalds every day for lunch, even when my whole school was banned (inner city comprehensive. Rowdy bunch). This is one of the perks of having Cystic Fibrosis - you can eat all that good shit and not gain a drop of weight. My mum wrote a letter to the manager, explaining my high calorie dietry needs, and from then on, I was the envy of the whole school. My friends could come with me too - luckily I didn't have to choose between fatty goodness and friends. Though if it came down to it, I just might have chosen lonerville... 

So this waiting game is one of the reasons I have succumbed and started this blog. I spend my days doing nothing. I sleep, watch Home and Away, then Neighbours, then sometimes Law and Order but it gets really hardcore, then sometimes the channel 5 afternoon film. Notoriously always absolute rubbish. But so rubbish, it's really watchable. Just like Will and Kate the Movie. Dotted during this crap fest I eat as much food as I can, and work my way through all the physio and nebs and boring things like that. This lazy lifestyle is actually a pretty good way of making sure I do all my treatments. 

I'm not a fan of going out much these days - my crappy scarred liver and fat spleen have made it so I look pregnant, and have constantly low energy levels. It sucks. I don't go out unless i'm wearing a big baggy jumper, which as the weather is warming up, is making it harder and harder. So I stay home, be good, make sure my chest is tip top to deal with the upcoming transplant, and indulge in guilt-free slobbery. There aren't many times in life where that's acceptable, so i'm making the bloody most out of it. This is also why i'm up at 2 in the morning... I don't need to get up until 1.15, just in time for my Australian soap fest.