Yearly Archives: 2009

On Sunday night I went to bed with my phone on and next to my pillow. I was fully expecting a midnight text to tell me that our wonderful fighter Jess had finally lost her battle after dragging herself through one last Christmas.

In the middle of the night – just after midnight, in fact – the phone did indeed buzz. I fumbled around, picked it up and read the message.

“Jess is having her transplant NOW”

I came on here this morning to leave a message about everything that’s happened with Jess in the last few days, but in fact my friend Sarah has beaten me to it and written such a concise and accurate blog detailing the events, emotions and thanks that we have all felt over the last few days that instead of trying to rehash it badly, I’m just going to send you over there to read about it. It’s also worth taking a look at the previous post as well, detailing as it does a family’s first Christmas together thanks to the wonder of organ donation.

Spare a thought as you read this for the family who have suffered the worst of Christmases and keep Jess in your thoughts and prayers. Although she’s finally been given her gift, she’s got a long road ahead of her and there are no guarantees. But one thing we all know is that she wouldn’t be with us now were it not for her call finally coming after more than four years of waiting.

I’ve been struck again by one of my intermittent bouts of insomnia and have – as usual on nights like this – found myself sitting and contemplating all around me.

In particular, I’ve been reading back over this blog entry from the summer and going back through the last few months on my Facebook. I wanted to break into the “real world” and do something that felt like a tribute to my donor. I know now that the decision to go to Liverpool was made in haste and a fog of ambition and clouded judgement.

I can’t regret that decision, though, as it’s left me in a place now that’s so much happier than I was before I left. Being away has made me realise what it is I want to do, but more than that it’s shown me that I have the knowledge, drive and courage to pursue it.

I’m immensely lucky to be surrounded my my wonderful family, my always-supportive friends and, of course, my wonderful K. Since getting back from Liverpool I’ve been happier in my life, my house and my skin that I can remember for a long time.

At the same time, thinking about the future has made me think about all those around the world less lucky than me. I lost my friend Jo just a few short weeks ago and said my final goodbyes last week and knowing that her family face Christmas without her is heart-wrenching. Added to which I’ve got one friend in hospital over Christmas, another friend’s baby brother in intensive care and two more friends facing the very real possibility that this will be their last Christmas if their transplant doesn’t come in time.

This time last year, my brother was fighting in Afghanistan in one of the longest and most protracted operations of our combat there. On Christmas Eve, in an experience I’ve never had before, I was overcome by emotion during the midnight service thinking about him and the dangers he was facing. Without realising, and something I can only attribute to the kind of sibling bond I’ve always derided, I woke on Christmas morning to a phone call from my parents to say that he’d lost one of his closest friends right by his side that night.

In truth, despite our hardships, my family is undoubtedly one of the luckiest and most blessed in the world. I’ve fought and won battles within my own body and been lucky enough to be given a second chance at life. My mum has battled her own illnesses and come through with flying colours and my bro has fought and survived one of what is turning out to be the bloodiest wars in decades for the British Armed Forces.

I’ve been blessed by so much happiness in my life and as Christmas approaches with people living in fear, in hope and in grief, I realise more than ever that now I know where I’m going, it’s time to put the pedal to the metal and get my arse there.

I can’t wait to get started. Here’s hoping that the New Year brings all of us the things we want most in life and, should it fail to and instead present us with more, deeper challenges, may we all have the strength to fight, battle and rail against them and emerge victorious this time next year.

As a wise man once prayed: “God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.”

Merry Christmas to you all, and a Happy, Healthy, New Year.

This may well be ultimately premature as I defy anyone to go and see this film and come away with their head clear and their mind made up. I currently have two major thoughts banging around my head. Before I explain myself, though, a word of advice. If you are remotely interested in film at all – not this film, just film in general – you HAVE to see this film on a big screen. It simply will not have the same impact on your telly or – God forbid – downloaded to your computer. This is justification for shelling out your hard-earned on a trip to the flicks.

ONE
Amazing. Stunning. Awesome. Incomprehensibly beautiful. Art on an IMAX scale. THe most utterly visually amazing film you will have ever seen, guaranteed, bar none and no exceptions. When they say this film is a game-changer for the 3D world, a concept I didn’t really understand beforehand, “they” are absolutely right.

I’ve never seen photo-realism to this extent. I’ve never so greatly empathised with, nor felt an emotional connection with, any animated characters like this. I’ve never seen near-lifelike creations communicate with such raw emotion and depth.

There has never been a film with digital environments this flawless, with a fantastic world created in such a way that makes you wonder where on Earth it could be. But unlike Middle Earth, you can’t just pop to New Zealand and find the back drops – this is pure artistry from the best in the business. ILM and Weta, two of the CGI and physical effects supremos in the business, have created undoubtedly their best work from first frame to last in this film.

TWO
Style over substance. It pains me to say it, but this is the genuine article. A world so rich and nuanced, a planet so beautifully rendered, a people so carefully crafted and a script so atrociously hackneyed it makes you groan.

However, there is an argument to say that the last thing you want with a movie on this kind of grand scale is a complicated plot which bogs the whole thing down. I would, however, have liked some characters who weren’t straight out of “How To Write A Blockbuster Movie 101”. Giovanni Ribisi is a great, and hugely underrated, actor. But in this he’s given nothing but “conflicted corporate fat cat” to play with and it appears is boredom is only assuaged by marvelling at the brilliance of the effects which weren’t even there when he shot. As if he knew what’s out the window behind him was going to be more interesting than the stuff happening in front of it.

More than this, though, what disappointed me was James Cameron’s shoe-horning of a ridiculous, over-used and way-too-heavy Afghan metaphor into the whole thing. If he was any more overt about the message he was trying to get across, he’d have needed a banner with vast, IMAX-screen, 3D words all over it proclaiming “THIS IS ABOUT NOW, AFGHANISTAN AND WHAT WE’RE DOING TO OUR PLANET AND THEIR LIVES”. And disappoints me is that I know he’s a better filmmaker – and a better writer – than that. Hell, the rest of the film proves that, if nothing else.

I can’t let it lie on a down-note, though. This is undoubtedly the most remarkable film that has ever been made. It contains images, creatures, people and effects that you will never, ever have seen anywhere else. It has a level of beauty in both craftsmanship and sheer visual brilliance that has never been seen and I’d venture to so won’t be again for a good long while.

This is a truly ground-breaking movie of epic proportions and will be a firm favourite of many people for many, many decades to come. It will, no doubt, be a favourite of mine, to. Because despite my misgivings, it’s one of the greatest filmic experiences anyone can ever have.

Once again, I reiterate from the start: do not wait for this movie to come to you: GO AND SEE IT IN THE CINEMA because you simply will not appreciate what this film is until you see it 20 feet high with your sexy 3D specs on. Enjoy. And let me know what you think.

I’ve been reading a friend’s blog this morning after another friend pointed it out to me. It’s a very interesting take on a couple of articles from the Sunday papers. Read it all here.

The pertinent part of the article for me was this paragraph:

“I use this medium to keep writing and putting my ideas out there, but could it also be a sort of safe haven of vanity, mainly accessed by friends and family, hardly ever questioned or criticized? There’s certainly at least a grain of truth in that.”

It made me reflect on what this blog is all about and why I’m still writing it. I don’t think it’s too strong to say that blogs are almost universally vanity exercises to some extent. While some bloggers are clearly onlt writing to massage their own egos and lead people to compliment them in various nice ways, all bloggers to a greater or lesser extent write because they want people to read it and read about them and their opinions.

When I first started writing SmileThroughIt back in 2006, the blog was intended for me to keep an online diary of the ups and downs [hopefuly] leading up to transplant. I wasn’t writing out of vanity – indeed some of the things I wrote about I didn’t particularly want to tell people – but rather out of the hope that someday someone reading the blog could gain some strength from knowing that someone else had been there before, much in the same way as Emily and I helped each other through experiences we shared on our road and the way Emily guided me through the frightening first weeks post-transplant when the world had changed instantly.

Even that, though, has an element of ego in it. I wanted people to read it and feel affected by it. Ostensibly I wanted to make a difference to someone else’s life, but how vast an ego did I have to think that words on a (virtual) page could really impact and comfort someone to that extent?

More recently, I’ve been blogging less and less as the minutiae of my day-to-day life is now not all that different from other people’s. I contemplated stopping the blog, but some of my readers protested and I kept going, but even then I’ve not blogged in the same open and honest way as I had previously.

Take Liverpool for example. If you read the posts on this blog from September, October and November you would have no inclination at all of the struggle I was having at the time trying to keep myself happy and weighing up the option of whether to return home or not. The ego in me didn’t want people to know I was struggling – I didn’t want people to think I was living an unhappy life as I felt it to be some kind of betrayal of my donor.

Now, this blog is here to serve almost nothing but my vanity, or so it seems. I can keep my writing honed, I can keep my family and friends abreast of what I’m up to and I can occasionally comment on something I want to comment on. But I’m not entirely sure what else it’s for, or whether it’s something I should still be doing.

Any which way you look at it, blogs are vanity. Not always consciously and not always in a negative sense (vanity’s not always a vice), but they are very insular and – as Miss Write points out – they largely go uncriticised.

The next month will be blogging as usual on this site, but in the new year you’ll see a radical overhaul to morph the blog into part of a new project that should be hitting the ‘net in January or February 2010. Keep watching, the ego has landed.

Happiness is an often elusive thing. It is at once indefinable and definite – you just know when you’re happy. It’s also vital to life. Or at least to mine.

A long time ago, pre-transplant before I was seriously ill, I promised myself that I would never have “just a job” – that I would always do something that made me happy. It didn’t matter to me if that was street sweeping, rubbish collecting or running the biggest company in the country; if I was happy that’s where I’d want to be.

This has come back to me over the last few weeks and months up in Liverpool. The ultimate truth is that I’m just not happy up here.

The decision to come to university was made in a rush of confused feelings about my past, my present and my future. At the time it seemed like a great option for me to explore what life is like outside the confines I’d previously lived in and that life as a student – something I’d missed out on when I was still in my teens being too ill to go – would suit me and re-energise me.

The theory behind the decision to come to LIPA was sound: I’d always wanted to come and when I saw the place in clearing I leaped at the chance to be a part of an institute I’d always wanted to go to. I didn’t, however, consider well enough the value of the course to the way I see my life panning out.

LIPA is a remarkable place – the people, the building, the students, the tutors, the shows: all outstanding. But it’s not the right place for me to be.

I’ve been unhappy here for nearly as long as I’ve been up here and it’s taken me a long time to reach the decision that I’ve come to. In the end, though, the opportunity to come back and start the rest of my life with my wonderful, devoted and utterly beloved K combined with the chance to pursue a project I’ve wanted to push through for well over 3 years was too good to turn down.

K and I have been through rough times in the last six months or so. We’ve been through rough times in our own, individual lives; we’ve been through tough times in our relationship and we’ve been through hard times in our lives together. But we’ve come out of it stronger and more supportive than we’ve ever been.

When I came back South a few weeks ago, I had a long chat over lunch to two of our closest friends who, when I aired my views about Liverpool, came up with one singular piece of advice: follow your heart and not your head.

I have spent too much time in the last few months thinking through everything. Wondering about what my family would think, what K’s family would think, what my friends would think and – most important of all – what my donor and their family would think. What it comes down to is this:

I want to do something that makes my donor proud to have bestowed this gift on me. And sitting up in Liverpool, miles from the woman and the people that I love and living 3 years of an already-shortened life being unhappy just isn’t right.

So it is with a heavy heart, but high hopes that I take my leave of Liverpool and LIPA later on today. It’s been a great ride: Wind in the Willows was an amazing show to work on and I’ve made some firm friends. But it’s time for me to do what’s right for me, regardless of what anyone may think or feel about it.

Am I sad to be leaving? Yes. Am I disappointed in myself? I am a little. Am I excited about what comes next? You betcha.

After everything that’s happen this week, there has never been a more important time for me to dedicate myself to the life I want. The life that makes me happy.

Nearly five years ago I had a night out in Milton Keynes that broke all the rules of CF – three of us who had become friends on the CF Trust’s messages boards (and another bunch of mates) met up for a party in town.

Toria, a long-held email acquaintance, and Jo, a young, effervescent and far-cooler-than-us teenager, hit the town harder than we probably had for a while and I’m inclined to think harder than we should have, too. Toria came back and crashed at mine, while we all promised this would be the start of many similar nights.

Now, in the space of just over a year, I’ve lost them both after having my life utterly change through my transplant. Neither of them were as lucky as me – both listed, neither got “that call”. I detailed in this post my emotions on Toria’s death, as we’d fallen – stupidly – out of touch over something that was on reflection utterly trivial and should never have come between us.

I was in touch with Jo right up to the end. Her transplant journey, although occurring a couple of years later, mirrored mine almost exactly with treatments, problems, worries and everything else. She was cared for my the same CF team in Oxford and was to be called to the same hospital for transplant.

This morning, however, she lost her fight. Buried deep in the technical rehearsal process of Wind in the Willows at the moment, I didn’t know about this until almost 10pm tonight and it has utterly shattered me.

Over the last few weeks and months, I’ve talked to Jo through all the ups and downs that come with the wait for transplant, but never for once imagined she’d be near the end. I left LIPA this evening and walked home with the night’s light rainfall mixing heavily with my tears as I thought back to that day in the mighty Oceana (pre-smoking ban and all).

Toria’s death impacted on me hard as I felt so removed from it. Jo’s has pole-axed me as I just wasn’t ready for it. Are we ever ready for the death of a beloved friend, or is it just that at some point we’re prepared?

I don’t understand how I can be presented with this chance to live my life how I want to and do all that I can when two of my friends have their chances ripped from them. It doesn’t make sense to me and I guess it never will.

I love you, Jo, you were so much more than just a friend at the end of the phone. I’ll miss you and I’ll think of you every day. The rest of my life is for you, honey – you and all the others who haven’t had the chance that I’ve been given.

Rest easy now, take a deep breath.

Today marks the point 2 years ago when I received the ultimate gift from a wonderful person. It is, therefore, a day to celebrate.

Being currently ensconced up in Liverpool and far away from many of my friends, I’ve developed a slightly novel way of celebrating using the magic of Facebook and Twitter.

I’m asking anyone who wants to join me in celebration to find their own way to mark the occasion, whether it be a party, a trip to the pub or just raising a glass in their living room and to take a picture of themselves doing it and upload it to either the Facebook event page or onto Twitter.

If you’re on Facebook, search for “Oli’s 2nd Second Birthday. Party Where You Are Party” or find my profile and get to it from there. If you’re a Tweeter, simply use the hashtag #oli2nd.

Have a great day today and, if you get chance, raise a glass to me and my donor.

As I wrote this time last year, I hold the 19th of November as a particularly special and reflective day for me.

I received my transplant at 00.15 on the 20th November 2007, from which I can deduce that Monday 19th November 2007 was the day one family lost a very important member.

One family, somewhere in the UK, is today mourning the loss of a beloved child. Although I don’t know anything else about my donor, they may also be mourning a life-partner, a sibling, a parent and, most likely of all, a close and trusted friend.

Today I will be remembering a person whose faith and courage saw them sign the Organ Donor Register and offer me the chance to live again, even after they had died. I will also be saluting the incredible and immense clarity of thinking on behalf of a family going through their worst of experiences in allowing the surgical teams to go ahead and follow their loved one’s wishes.

Without this generosity on the part of people I will never meet, nor likely ever know, I would not be here.

I wouldn’t be here to think of all those friends I’ve lost when their chance didn’t come in time. I wouldn’t be here to support and pray for all those friends who are waiting right now, their lives hanging in the balance waiting for a family to be as courageous as my donor’s family. I wouldn’t be here to realise the things most important to me in life and I wouldn’t be here to effect the changes I know I need to make to live my life to its fullest extent – the only real way I can ever show my appreciation for what has been given to me.

So if you’re watching down on me from above, I want to thank you. I want you to know how much your gift has already given me and I want you to know that I am doing and will continue to do all that I can to make sure that every second you look down on me, you are proud.

I can think of no greater goal in life than the pursuit of the knowledge that, this day and every day, my donor is proud. Proud of me, proud of what I’ve done and proud of what I’m doing.

Thank you will never be enough.

As the years of my wait for a transplant slipped by and my health got progressively worse, I was more and more confined to my flat in MK unable to venture out without massive exertions. Inevitable, I suppose, this led to periods of struggle with my mood and fight to stay positive (of which long-time readers will recall this being a large part).

Another large part of that battle to keep my head above the depressive waters that threatened to flood over me was the DVDs of Eddie Izzard’s previous UK tours, most notably Glorious and Dress To Kill.

Both of these would never fail to make me laugh and would frequently result in intense bouts of coughing which, if nothing else, made my physios happy as it cleared a lot of gunk off my chest.

Last week, when scouting around the ‘net for things to do with K when she came up for her visit this weekend, I discovered that Eddie was playing at Liverpool’s ECHO Arena. Expecting it to be fully sold out, I nonetheless logged on to the ECHO website and to my amazement and joy I bought us two tickets.

After nearly five years since first coming across him and 2 years of a fight for life, following a two-year recovery period with as many lows as there have been highs, I finally got to see the man who helped me through it live and in the flesh.

There’s really no way to describe a comedy gig comfortable in writing, so I won’t try to. All I’ll say is that if you know him, if you like him, you are duty-bound to seek out his nearest date to you and go see him.

The man’s a legend and my ribs still hurt.

Everything I’ve seen about Heath Ledger’s final film has told me two things: 1) It’s Heath Ledger’s final film (he died half-way through production, to be variously replaced throughout the film by Johnny Depp, Colin Farrel and Jude Law) and 2) It’s utterly rubbish.

From watching the film myself today, I’ve discovered three things:

1) It’s almost the ultimate Terry Gilliam movie, combining the tangible, off-kilter world of a only-slightly-stylised reality with the final-given-enough-money beauty of the CGI creating the heavily surrealist world beyond the mirror that take people inside their own minds. Where his previous films have failed for me has been the difficulty in realising this clash of the real and the fantastical, but Parnassus does it almost perfectly.

2) The three actors who came in to finish the film, playing 3 versions of Ledger’s Tony who appear through the mirror did a great job. Admittedly, knowing the story behind the film made me almost predisposed to look on them favourably: all three stepped in as friends of Ledger’s to offer their services, all three fitted the film in around their other filming commitments and all three donated their fees to Ledger’s young daughter. But all three of them also hit just the right balance of the surrealist elements of a shape-shifting lead character by keeping just the right amount of Ledger’s original performance while infusing it with a spirit and attitude of their own. It never feels like 3 people pretending to be Heath Ledger, which would have been dreadful.

3) I really, really, really liked it.

So I may well be the odd one out in all of this, but frankly, who cares? I unashamedly love this movie. I love all that it stands for, I love all that it means, I love all that it’s been through and I love the end product more than any other Gilliam film I’ve seen before.

As a side note, K’s come back up to Liverpool with me today and we saw Parnassus at FACT, an amazing Liverpool cinema and gallery space which impresses me more and more every time I go. Today’s screening was in a small-ish box room with the audience all seated on 2-person sofas; a brand new experience for me, but a great one. There should be a flickhouse like this in every city.