Monthly Archives: March 2009

Up at 5.45am as per usual again today – it’s been nice to have a little while off early mornings. Got K to the station then despite the early wake-up I was feeling energised and motivated enough to sit and plough through a wapping 26 pages of the new screenplay, bringing me within about 10 pages of hitting my self-imposed 1st April deadline.

I’m really quite pleased with it all, too. It needs going over and refining, but all first drafts do. The crucial part is that a) I’ve got it down on paper how I saw it in my head and b) I’m actually pretty happy with what I’ve written. Just have to see if I can finish it off now.

The rest of the day was spent catching up on the weekend’s emails and other correspondence. I’d managed to keep away from the computer the whole time which was actually really refreshing. Saturday we chilled at home all day – another total and rare blessing – and then spent the evening with Gramps at the ‘rents. Sunday we chilled in the morning before I headed to work, then got dinner and chats with Gramps again before they leave tomorrow, although it wasn’t a late one as we were obviously both up early-doors tomorrow.

After all my brother’s exploits in the Sun last week (see this article and it’s related links. He’s the dude in the goggles in the pic, plus featured in many of the videos), I got a call from him this morning to let us know he’s on his way home this week.

While that sounds like fab news – and for us, it is – it’s actually really gutting for him. It seems he’s torn the ligaments in his ankle playing some post-ops rugby in camp and now can’t stay out there for the week or so of wrap-up session they’ve got and then their wee company/commando jolly to Cyprus on the way home. Instead, he’s trying to resist letting them put a cast on it and eyeing a spot on the AeroMed home this Thursday. Like I say, fab news, but gutting for him.

Up again around 8am – second lie-in in a row! – and ran K down to nursery before popping in to see a friend who’s right at the end of her pregnancy and trying desperately not to let Baby come along yet. She was feeling awful today and really struggling, but she’s almost full term and there shouldn’t be any issues, which is something I tried to reassure her of.

I ran home quickly before popping down to the nursery to film an interview with K and the nursery manager for her course, which she then has to come home and edit into something coherent for her tutor to observe her clinical practice. Or something.

Had a look around the nursery, too, which is absolutely lovely. It’s a private nursery just down the road from where we live and it’s so beautifully set out with so many stimuli for the children. I dropped in on the babies (3-18 months) who were all unbelievably cute and gorgeous. The nursery itself is a large private house that’s been converted for use and the back garden is jam-packed with awesome play equipment which really let’s the kids throw themselves around and have fun.

Popped home again (lots of popping today, clearly) for half-an-hour before going back to collect K and coming home to polish up the multi-media stuff for the Royal’s scratch performance tonight, when I’ll finally get chance to see the whole piece as one and work a little on the timing of the various elements.

The majority of the afternoon was spent between Photoshop and Final Cut Pro, making logos and composites in the former and editing together a montage of war footage in the latter, all of which went pretty quickly and easily, to my surprise. I wasn’t sure I’d get it all done for the rehearsal/performance tonight, but in the end I did it fairly comfortably, which I was really chuffed with.

Headed to Northampton and dropped K at her appointment, then went on to catch up with a couple of friends I’ve not seen in ages. Suze, who I’ve worked with extensively for nearly 8 years, gave me some really good ideas of how to try to engage the Youth Theatre groups we’ve been struggling with recently, which I’m hoping I’ll be able to put into practice over the next term to try to pull the young people into the sessions and get them to engage.

After a quick coffee and catch-up, I moved on to the scratch performance, which started a little late but was hugely useful in working out how and when my pieces can slot in most unobtrusively, in order to best support the work that the group are doing on the stage.

Late start meant late finish again, getting away from the Royal around 9pm, which was quite a bit later than I’d wanted to get out, then picked K up from her bro’s house where she was babysitting while our niece was out with them for her birthday meal. I did get to see J, though, to wish her a happy birthday, which was really nice because I wasn’t expecting to see her.

Dinner, then, was incredibly late, getting home as we did around 11pm, which then meant I wasn’t getting to sleep until well after midnight as I was wide awake from the food. Ho hum. At least I get a proper lie-in, veg-out session tomorrow morning. Bliss.

Between organising some other bits and pieces today (and having a “lie-in” until 8am) I spent a lot of the day putting together the multi-media stuff for the Royal’s New Connections project, which was quite good fun.

In order to get it all to run properly and easily for the technicians operating it on the night, the best way of working it is to put it all into a Powerpoint presentation, which can then either be automated or run with single-push button progression. The only problem with that is that I absolutely hate Powerpoint. Apart from anything else, it’s so inflexible – there’s so many things I want to do with the transitions and other things, but you have a choice of 3 or 4 options which have no adaptability and no ability to customise them to your wants/needs. Frustrating to say the least.

In the evening I headed into MK Theatre to talk to their script writing course writers about possibly directing a show-case of their work, or part of it. Not sure if it’s going to work out with my dates and availability at the moment, but we’ll see if we can make it work somehow. It’d be great fun to work on some new pieces, but also educational to work with new writers on the first performances and developing/evolving the script.

Hurriedly rushing off from there, I headed over to Northampton to the Royal for their last rehearsal before the scratch performance of their piece for the National tomorrow. Frustratingly, they didn’t get around to a full run-through as the stagger-through took too long, which meant I didn’t really get to look into the timings for the piece, but I did at least get to sit down and go through the presentation with the director, who was very complimentary and had a couple of notes for me to take away.

A later night finish than I’ve had in a while, not leaving until 9.30pm, but it actually feels pretty cool to be back and involved in some proper live performance – something I’ve not really done for almost 3 years now. Exciting stuff.

As part of what I think industry and teaching call “continuing professional development” – in other words, learning new stuff – I spent my day today at the Castle Theatre in Wellingborough training as an Arts Award adviser.

Arts Award is a qualification that young people from 11-25 can take which can not only help boost their confidence and push them out of their comfort zone, but also, potentially, set them up for moving forward with a career in the arts. Encompassing all art forms from theatre and film to stone masonry (really), young people can do projects on Bronze, Silver and Gold levels to achieve certificates which will doubtless then carry weight with applications to Arts colleges, universities and – potentially – lead to avenues for employment.

It’s a great scheme and a really exciting thing for me to be able to deliver. Initially, I’m looking to set up a scheme within the Grove in Dunstable, but I can also register myself as an independent centre meaning I can run and assess young people on the award independently of a venue. It’s a great string to my bow and could open a lot of doors for me.

Yesterday I ploughed through a huge heap of work and finished off very proud of myself for getting through my to-do list, then had a really hard session at the Grove with the Youth Theatre. There are two participants who are really hard to engage and it’s totally baffling me – I don’t know what to do to get them into the fold. Having tried just about all areas of drama this term, the other practitioner in the sessions and myself are at our wit’s end trying to find out why they come and what they want from the sessions – it seems impossible to please them.

On a brighter note, the rest of the group really enjoyed it and seemed to get a lot out of it and we got some really good feedback to signpost where they’d like to go next term, which makes things much easier for us in eliminating the guess work from the planning process.

Got back and chilled out with K watching some random TV as she unwound after her exam which , after considering she’d probably just about managed a pass with 50%, she rocked up to uni today to discover she’s got yet another 1st. Can people please comment on here to show her that she needs to stop underestimating herself and realise that she’s actually pretty damn clever. Enough said. Love you.

I’ve been kind of promising myself a day off for quite the little while now, but not until today did I actually give myself one. Acutally, it was entriely unintentional. I looked into my diary last night and realised I had nothing booked in for the day – in itself something really rather exceptional – and when I woke up this morning, perched with laptop on the sofa bed (on which I’m currently residing as K has a virus of some sort that is as-yet undiagnosed and we don’t want to run the risk of passing it on, which sucks big time) I thought to myself that if I didn’t have to be anywhere today and I didn’t have any deadlines today or tomorrow then what I should really do is just enjoy the emptiness for the day.

Which is just what I set about doing. I managed to spend *almost* the entire day sprawled on the sofa bed watching some old Season 2 Episodes of Entourage (my inspiration of choice at the moment), surfing the ‘net, spending way too much time on Facebook and writing 14 pages of my current script, which has taken me up to 59 pages now and just a little behind my target for getting a first draft done by 1 April.

I haven’t spent a day doing practically nothing for a really, really long time and it was actually completely awesome and much, much needed. It’s amazing how much you can relax and recharge with a day of not doing anything at all. That’s really what weekends should be about but is something both K and I seem to be 100% terribly at keeping clear and free to chill out. We keep promising that we’ll be better at marking things out, but it’s a habit we don’t seem to be able to break. People are so nice they keep asking us to do things. And we appear to be incapable of saying, “no”.

But that’s all for another day and another time. Right now, I still can’t sleep because I apparently didn’t do enough today – ironic, huh? – to send me to street straight away. So I’ve got Devil Wears Prada on in the background and trying to work out if that attitude would work for CF Talk. I’m thinking not…

Today I finally finished my run of 4 talks in 3 weeks with an address to the CF Trust’s regional conference in Oxford.

Rosie, the Chief Exec of the Trust, originally asked my consultant to come along and talk about the adult service, but she couldn’t make it so the baton was passed to me. I love doing talks and things in general, but especially for the Trust. And even more extra-specially when it’s to talk up the amazing team at Oxford who helped keep me alive long enough to reach transplant.

I would pop the text up on here, but it was a 30 minute speech and the text is close-on 3000 words, which is quite a good deal mroe than anyone really wants to read on a blog, but if you really, totally desperately want to read a copy of it, let me know and I can mail it to you.

It went really well – by all accounts so did the entire day – and it seemed to strike the right notes I was trying to hit. It’s always hard to pitch a speech to parents of people with CF, particularly some very young children. You need to make sure you’re not belittling the task that lies ahead, the enormity of dealing with all the crap that life with CF throws at you, but at the same time it’s important to let them know that CF doesn’t strip your life away of all meaning or ability to have fun and it certainly doens’t mean you’re going not going to be able to make something of your life.

I think – I hope – that I managed to pitch it right this time. Certainly all the feedback I received from the day was positive, but then it’s got to be a pretty awful and borderline insulting speech that will make anyone come up to you afterwards and tell you it was rubbish, so it’s good not to get too carried away.

It was nice, though, to have a chance to catch up with the team who came along. Clinic time is so precious I’m always reluctant to stay and chat too long, but today I got there at lunch time with a chance to sit down with them (and my parents, who decided to come along for the day) and have a really good catch up and chat about things – medical and non.

On the way home I developed a killer headache and was running much later than I’d planned, so I had to pull out of a rehearsal visit in Northampton for the project I’m working on with the Royal and instead couldn’t do much more than veg on the sofa and eat a bowl of soup. Really bizarre, hard-core headache, it was, but it doesn’t seem to have recurred as badly since, so it must have been a one off and probably thanks to dyhdration more than anything else. Was a sucky end to the day, but it had been a good one for most of it, so no real complaints.

Tonight I experienced quite possibly the most mesmirising stage performances I may ever have seen, with the possible exception of So I Killed A Few People at the Edinburgh Fringe in 1999, but for very different reasons.

I was at Milton Keynes Theatre to watch the phenominal acting talents of Sir Ian McKellan and Patrick Stewart alongside Simon Callow in Waiting For Godot and they truly blew me away.

I have to confess that I’m not actually a huge fan of the play – in fact, I’ve never managed to read it all the way through as I got a trifle bored with it (sacriledge I know, but the arts are all about personal opinion) – but they made it a remarkable experience.

There’s an old acting lesson that states that acting is not about acting, it’s about reacting and that couldn’t have been more clearly illustrated than in tonight’s performance. McKellan and Stewart are constantly working in support and opposition to each other, always adding depth and flavour to whatever’s going on in the scene without ever battling to steal the audiences attention.

Didi and Gogo are difficult roles to play – emotions varying wildly, constantly on-stage but rarely actually doing anything – but they played them both with the deftness of touch that made sense of the unfathomable.

I could sit here and write about them all day, but I’d soon run out of superlatives and end up on a Lucky-style meaningless rant, so I’ll take my thinking hat off now and leave it at that.

Suffice to say that it’s still touring round the country and lands in London at the end of May at the Theatre Royal Haymarket and if you – or anyone you know – are interesting in a career in performance, don’t waste your money on silly summer schools which purport to teach you all you need to know in a week, or wile away your time at a second-rate acting school on a three-year degree course*, just save your cash and buy a front-row stalls seat to watch these masters in action. You’ll learn more in 2-and-a-half hours in the Haymarket than most acting course can teach you in a year.

*noted exceptions being the top-notch London training centres like RADA, LAMDA, E15 and Mountview. Possibly LIPA, too.

It’s funny because I’ve always laughed off those “Superman” posts from the time of my transplant 16 months ago, but I’m starting to think there might be something in it. I can’t fly, I don’t have X-ray vision and my hair doens’t go all slicked down when I take my glasses off. Most of all, I always wear my underwear beneath my trousers. The operative part of that word being “under”. But he is from Krypton so he may not have realised that yet.

My similarity to Superman merely extends to the fact that I appear to be powered by the sun. I’m very environmentally friendly in that respect – I’m solar-powered, just like Supes.

Last week I had really reached the end of my body’s ability to cope with what I was putting it through. I was sleeping in the daytime for the first time since my CMV set-back in May last year and I couldn’t rouse myself to do anything unless it was fundamentally important to either eating, drinking or earning enough money to eat and drink. I was slow, lethargic and just down-right knackered.

This week, in addition to having a little less to do – certainly less running around – the sun’s been shining and my batteries have been well and truly recharged. It’s such a wonderful feeling. I don’t know if anyone else watched the Comic Relief Kilimanjaro trip, but in it Fearne Cotton hit the nail on the head when she said, “People should never underestimate how good it is to feel normal.” That’s what I’ve go back to this week.

It’s interesting because even when I’ve been running myself ragged over the previous few weeks (or more), I’ve been totally aware of how great it is to be doing it all. I’ve never once taken my ability to do all these things for granted and every day I thank my donor and their family for allowing me to do it. This week has been a reminder, though, that as much as I enjoy what I’ve been doing, I really do need to make sure I leave myself some “me time” – some time just to sit and chill out and enjoy the world around me.

And that’s what the sunshine is great for – it’s 100% guaranteed to make you look out of your window in the morning and smile. At least it is for me. Even waking up at 5.45am, just seeing the first rays of sunlight and walking out to the car at 6.45am in broad daylight makes the day easier. I just feel more happy, more alive, more free when I can see the sunshine out the window.

My energy has returned and I feel like I can conquer the world again. I’ve got work coming in and I’m on target to finish my new screenplay by April Fool’s Day (no joke), which is motivating and energising me any more.

There’s a huge amount to be said for positive mental attitude, which is why the sun and summer help improve life so much. As a good friend of mine is wont to say, “This is my life and I choose to love it”!

I’ve been so busy of late that I’ve fallen way behind on my cinema viewing. Most disappointingly of all, I wasn’t able to get to all the Oscar nominees, which is something I try to do every year. I was really bothered about not checking out Doubt or The Reader in particular, but I also really wanted to see both Milk and Revolutionary Road. But time waits for no man and neither do cinema releases, which are getting shorter and shorter windows at the multiplex now.

Thanks to all of this I decided that I’d spend my first clear-diary-day yesterday at the flicks and catch Watchmen – the kind of film that is likely to make so much more impact on the big screen than when you bring it home on DVD.

Interestingly, I wasn’t expecting to like this very much, which probably served it very well. I have a strong tendency to hype things up in my mind and end up ultimately disappointed by them, so going into a film with low expectations often then works in my favour.

I was suitably impressed – it’s a really good film. The visuals, as you’d expect from 300-director Zack Snyder, are impressive, particularly the open two sequences. But what I liked most about it was how happy it was to let both the people and the story be ambiguous. There’s no clear-cut, black and white definitions in Watchmen at all.

I’ve not read the Alan Moore graphic novel this is based on, but knowing his work I suspect that all of the ambiguity is from him, something Snyder’s clearly worked hard to keep in. I can only imagine the pressure that came from the studio to “lighten it up” and make a few of the characters more likeable. But it’s tribute to Snyder that he stuck to his guns and has turned out a kind of anti-Hollywood blockbuster – it’s big and loud and brash, but it also has a very “indie” sensibility, putting the characters at the forefront and enjoying it’s inherent contrasts.

It’s definitely worth seeing, if for no other reason than it’s a rare comic book movie that ditches the idea of playing to the “tween” market and instead pitch itself exactly where the graphic novel that’s gone before it did. Like the uncompromising Sin City, this features gruesome, hard-core violence, full-frontal (albeit CGI) male nudity and soft-core sex scenes between two main characters. Batman and Robin this is not. Better than that, it is.

The third speech in my 3 week, 4 talk period went down really well at the CF Trust fundraiser 1 in 25 Ball at Wokefield Park near Reading.

The full text of my speech, as delivered, is below.

It’s an amazing place, Wokefield Park. You arrive on a long driveway through the golf course, which is lovely but somewhat reliant on them only allowing 10-handicappers on the course, I’d hope. As you approach the hotel, the first thing you come across is the big conference/exectutive centre, which presumably doubles as the club house, too. It’s an odd looking building that’s not unattractive but doesn’t exactly wow you upon arrival. Instead, it’s more of a run-of-the-mill hotel and conference venue in really, really nice grounds.

Having been inside to check in, I’m told we’re actually staying in the other section of the hotel, the Mansion House, where the ball itself is taking place. So we jump in the (new) car and head over to the other part of the grounds, where we round a copse of trees to discover the most beatiful period mansion I think I’ve ever stayed in. With a newly-refurbished and stylishly modern interior, it’s a perfect marriage of old architecture with 21st century functionality.

The bedrooms are something else – huge beds, loads of room and, best of all, a proper rainfall-head shower that I could have stayed in all weekend it was so gorgeous and refreshing.

The ball itself went exceptionally well – we were kindly put on a table of hugely friendly people who made us feel welcome in a room full of 120+ total strangers (save for Jenny, the CF Trust Regional Fundraising Manager who had invited us down). After a slightly cocked-up (time-wise) but delicious dinner, I was given a really quite lovely introduction, cribbed mostly from this blog and the CF Trust’s website and delivered my short speech.

After dinner there was the usual auction and raffle, followed by a brilliantly organised casino of Blackjack and Roulette, where guests could make a donation of £10 to the Trust in return for $100 in play money. Then when all was said and done at the end of the night, the chips were cashed in and the top 5 walked away with a prize.

I spent a little time teaching K how to play Blackjack and nearing the end she spent a lot of time trying to lose all her chips so she could go to bed and ending up actually winning more back. Riding our luck (and knowing that we were far from chip leaders, so seeing no point in diligently saving our meager stack up), we decided to switch to Roulette, which I usually dismiss as a mug’s game.

As it happens, through a careful system of hedging my bets I was a fair bit up coming into the last 5 minutes. Soon, though, it started to dwindle as I got over-confident and bet stupidly, although I suppose that betting in general is an intelligent thing to do, which is a concept many may struggle with. With one spin left, I had eight chips, so to make it exciting I put half on Number 11 (the hottest number of the night) and one on 25 (a number I’d bet near or around several times and lost out on) and with the final spin of the night, the ball dropped in 25!

Much to my amazement, after cashing out, I found myself landed up as the 3rd place chip holder and the happy winner of a lovely case of Spanish wine from the oldest vineyard in Spain. Not bad for a random guess. It’s quite easy to see how addictive gambling could get in those situations, though, so I’m not dashing off to Vegas to get stuck in for real just yet.

After the casino packed up and as the band were hitting their final numbers, we both called it a night and headed to bed, exhausted from the day’s activities.

Here’s the full text of the speech I delivered to the ball guests:

“Good evening, Ladies and Gentlemen. Thanks for having me here tonight. I’d like to thank the organising committee for what has been a great night so far and I’m sure is only about to get better. I’d also like to thank the sponsors of tonight’s event. I wanted to mention you all by name but so many people have been so generous in support us tonight that it would take me all of my speaking slot to go through you one by one, so instead I’ll just offer up a very big and – sorry – generic thank you to everyone who’s helped us to make sure we’re in profit already before we even tackle the auction, raffle or casino. So thank you.

I do this kind of thing quite a lot for the CF Trust. It used to be really easy. Before I had my transplant, I’d turn up at these events dragging an oxygen cylinder behind me – I was on 24-hour oxygen – and looking terrible. I was incredibly skinny, I had really pale skin and horrible, dark rings around my eyes. I’d just stand at the front of the room and say “Look – it’s rubbish” and people would feel sorry for me and pledge loads of money.

Now I’ve had my transplant it’s a whole different ball game. I stand in front of people and say “it’s rubbish” and they think, “It can’t be that bad, he looks great.” At least, I hope they think I look great. But I feel great, I feel better than I’ve ever felt and it means that when I do these events now I actually have to think of something to say!

The CF Trust is very important to me, as you may know. They’ve helped me through some of the toughest times – in fact, the very toughest times – of my life and been there for me throughout. Which is why I like to do things like this. Because apart from getting all dressed up and enjoying a lovely meal, I get a chance to give something back to them for all they’ve given me.

And the work that CF Trust is doing – the gene therapy work that tonight is helping to fund – is vital to helping make sure that people don’t have to go through what I’ve been through. If gene therapy works the way we all hope it’s going to work, it will remove the need for transplants by stopping the lung damage that proves fatal to so many people with CF. It will – hopefully – help to ensure that children being born with CF today have a much better chance of a much longer life than I will ever have.

I consider myself very lucky to have received the gift I did. When I do events like this and I start talking about luck, I always come back to the same story – the story of my friend Claire. Claire was a slightly odd friend in that she was, in fact, an oxygen concentrator. A portable oxygen concentrator. And she was something of a good luck charm. She originally belonged to a friend of mine called Emily, who had a successful double-lung transplant in January 2007. Once she’d recovered, she realised she had no need for Claire any more, so she passed her on to me and, six months later, I received my transplant. Once I’d recovered I, in turn, passed her on to a friend of mine called Sam.

Now, the thing about luck – as I’m sure you’ll all find out later when you hit the casino – is that it runs out. Last year, when I was celebrating my 26th birthday – a birthday I never through I’d see – Sam lost her fight. She died. And no matter how many times I tell this story, I still find it really emotional. Because it’s hard. The reality of the transplant list is that if you’re waiting for double-lungs you’ve got a 50% chance of getting them. Which means 50% of people die while they wait. I realised just last week that I’ve actually known more people who’ve died on the list than who’ve had a successful transplant.

And 50% is quite a good statistic to look at. Take a look around your table now – 50% equates to every other person on your table dying. That’s too many.

And that’s why the work of the CF Trust is so important. The gene therapy research that they’re doing will remove that element of luck from the lives of everyone who has CF. It’s not a cure, but it will work to prevent the lung damage that puts people in a situation where they face such bold statistics.

We all want you to enjoy yourself this evening, we want you to have fun. But we also want you to remember that you’re hear for a reason. You can help the CF Trust remove that element of luck from peoples lives by digging deep and bidding big in the auction and enjoying the casino.

Have a great night, thank you.”