Archives: Day-to-day

I don’t often go for personal appeals on here, but the CF Trust‘s recent funding crisis has lead me to write something – to do anything – to help in any way I can.

For years the CF Trust have been pioneering key work in the field of gene therapy and have successfully completed the first stages of a clinical trial. However, due to the current climate and all kinds of funding being slashed, they now nned to find £6million before the end of October.

They’re doing amazingly well, but they need to demonstrate the support of the wider CF community to leverage the private donations from the business community they have lined up.

While crowdfunding for your arts projects are all the rage just now, I implore you to dig into you pockets as deeply as you can and donate anything you can to make these trials happen.

I am hugely grateful for the life I have lead and I can honestly say I wouldn’t change any of it; to change my past would change who I am today.  But in the same breath, I would never wish the things I’ve been through on anyone.

That’s why the work of the CF Trust is so important. Babies being born with CF today face a far better prognosis that I did in 1982 and if the gene therapy work comes off, there will be no need for people with CF to ever face some of the stark and scary issues and choices that were placed in front of me.

You’ll get no perks, no T-shirts, badges, producer credits or invites to the premiere. All you will get is the satisfaction in knowing that you’ve helped a great number of people and families to have a better life and a better future.

If that’s not enough, I don’t expect you to donate – I certainly don’t want to make you. But if it’s a choice between an indie blockbuster looking for finishing fund or a chance to change the world, it’s going to be that latter for me every time.

Click here to donate now, whatever you can give gets us one step closer.

Last week’s post about whether mattering really matters or not stirred up a really interesting debate, both on here and also on my friend Chris Jones’ blog after he posted his thoughts in response.

One of my Twitter buddies also lead me down a really interesting thought pattern with his comment. He said

An audience of one is better than none

I totally agree with his point – at least in relation to filmmaking – but I also suggested that I sometimes count myself as an audience of one for my work.

As I’ve reflected over the weekend, it’s occurred to me that using myself is something of a cop out.

I’ve no problem with creating things in a vacuum and keeping them hidden from view – I like having space to experiment with filmmaking, writing, photography or any other artform I choose to challenge myself with – but it’s a lazy way out to say I’ve nade it for an audience of just myself.

One’s own self doesn’t not an audience make, and if I truly wanted to show things to an audience, I need to open myself up to that through wider dissemination of my work and not keeping it all safely tucked away.

I challenge myself to create more and share more with those around me, whether they be small, personal, family audiences, or a wider community of people in both my real and virtual lives.

Or, by contrast, to be happy creating in a vacuum just for me, but without trying to convince myself that it is anything but fear that’s holding me back from sharing it more widely.

How do you share your art? And how have you enabled yourself to open up to the big, scary world of feedback and criticism?

When I used to work as a workshop assistant and, later, as part of several different Youth Theatre companies around my home town, I remember thinking that adults really ought to spend more time learning from children.

The amazing thing about children is the way they prioritise their lives. To a four-year-old child the thing that matters more than anything else in the world is whatever they happen to be doing at any given moment.

Their play isn’t hampered by when they have to stop and go home. The tears that come when told they have to leave come and go in a matter of minutes. The time they spend with a parent is all-encompassing, as is the time they spend with their friends, siblings and others.

We all work busily on different ways to prioristise our days, to keep ahead of the curve and up-to-date on everything that’s going on around us, but maybe we should be more like children.

Instead of constantly worrying about what’s coming next, perhaps we should put more effort into being truly mindful of one thing at a time.

Try it yourself, see how much richer it makes your life and work.

Stop writing an email with Twitter open.

Stop pausing while you review documents to read the updates in your Facebook feed.

Stop thinking about what you need to do next or when you have to be up in the morning while you’re relaxing and cuddling on the sofa with your loved one(s).

Be present, be focussed and be four years old again. It’s remarkable when you make the effort.

Does it upset us if the art we create isn’t seen by other people?

Does it matter to us if it isn’t?

The truth is, for many people, the act of creation will be enough. But for just as many people, there is no point in creating something that will never be consumed.

The difficult part of making art is to act as if creation is all that matters, because only then can you make something personal and emotionally connected.

Being desperate for your work to ‘matter’ just makes us create what we ‘think’ people want, rather than creating authentic work that really matters to the only person that matters: ourselves.

Finding time for creativity is hugely important to me, but it’s not always easy. Reorganising and relaunching the blog has taken me away from my usual creative endeavours for the last few weeks and now I have to get back into the habit.

I’m hoping that keeping to 3 regular posts will help keep my creative brain ticking over nicely, while giving me the impetus to push forwards with other creative projects.

Every creative person works in a different way, but for me creativity stems from habit. I’ve always liked to believe that my creativity is able to be summoned at will. I now understand that it bows to no master, but I also recognise that it enjoys routine.

I don’t know if its the writer in me, or just the base level of habit-former in all of us, but if I can get myself into the right routine around my work day and my commute, I know I’ll be able to engage my creative brain and start creating things that matter to me.

We’ll just have to wait and see if they matter to anyone else…

How do you create? Are you a ‘do it while the inspiration strikes’ kind of artist, or a ‘head down, crack on’ type. Do you have triggers that set you off on a creatie journey?

I’m always on the lookout for new things. I love learning, growing and expand my horizons.

I have a fairly hefty collection of feeds in my RSS reader and I was noticing more and more of them talking about Leo Babuta and his ZenHabits website, so I figured I should check it out.

When you read something that turns your thinking around and helps create a new way of doing things in your life, it’s tempting to over-egg the proverbial custard by calling it ‘life-changing’. But, in a way, that’s exactly what ZenHabits has been.

I’ve always thought of zen as being more of the kind of eastern mumbo-jumbo that helps martial artists to focus and that many westerners scoff at, a bit like karma ((I should point out that I actually vaguely believe in karma; certainly I believe that what goes around comes around.)). But zen is at once so much more than that, but so much simpler.

Zen is not some mysterious order of blokes in funny outfits telling everyone to be like them. Instead, it’s just more of a simple way to be aware of what’s going around you and to keep things on an even-keel.

I’m a stress-head by nature. I thrive on stress, but it also, well, stresses me out. I inherited a very short temper from my dad, something for which I’m not proud, but always figured I’d just have to live with. But even in the short space of time I’ve been following the zen ideas, I’ve been able to stay calmer, more collected and immediately more productive.

Zen isn’t for everyone. It’s not a cure-all and there is no ‘zen switch’ that you can press to suddenly feel calmer. To truly embrace zen you have to believe in what it can do and invest yourself in it. Only then will you see the benefits of living a zen life.

I’m in the very early stages of developing my zen life, but I can already see the benefits and I’m loving it.

Have you ever tried zen? How did you find it changed you as you learned and adapted along with it?

This blog has been offline for almost 3 months. The first month was spent wondering what to do with it, the following two re-jigging the code and re-designing the site, getting it ‘just so’ before launch.

Why, then, did I launch the site yesterday before it was fully ready, while I’m still not 100% happy with it?

Two reasons:

1. I’m not sure it’s ever possible to be 100% happy with anything – there will always be things that bug me and that I want to change. So I’ll just change them as I go.
2. It’s far more important just to get it out there than constantly be thinking about getting it out there.

In all the huffing and puffing over lines of code and photoshop files, I lost sight of the fact that the purpose of this blog is to keep me focussed on what’s important. Getting the perfect website just right isn’t one of those things.

Far better to get things out there, to open yourself to the world – to ‘ship‘ in Seth Godin terms – than to sit on your butt and think about doing something that you may eventually ship.

What project (or projects) are you sitting on, waiting for an excuse to start? When are you going to start? And when are you going to get it out there?

IF you can keep your head when all about you
Are losing theirs and blaming it on you,
If you can trust yourself when all men doubt you,
But make allowance for their doubting too;
If you can wait and not be tired by waiting,
Or being lied about, don’t deal in lies,
Or being hated, don’t give way to hating,
And yet don’t look too good, nor talk too wise:

If you can dream – and not make dreams your master;
If you can think – and not make thoughts your aim;
If you can meet with Triumph and Disaster
And treat those two impostors just the same;
If you can bear to hear the truth you’ve spoken
Twisted by knaves to make a trap for fools,
Or watch the things you gave your life to, broken,
And stoop and build ’em up with worn-out tools:

If you can make one heap of all your winnings
And risk it on one turn of pitch-and-toss,
And lose, and start again at your beginnings
And never breathe a word about your loss;
If you can force your heart and nerve and sinew
To serve your turn long after they are gone,
And so hold on when there is nothing in you
Except the Will which says to them: ‘Hold on!’

If you can talk with crowds and keep your virtue,
‘ Or walk with Kings – nor lose the common touch,
if neither foes nor loving friends can hurt you,
If all men count with you, but none too much;
If you can fill the unforgiving minute
With sixty seconds’ worth of distance run,
Yours is the Earth and everything that’s in it,
And – which is more – you’ll be a Man, my son!

— Rudyard Kipling

Nothing sums up the way I’m feeling this morning better than this amazing poem. It’s probably my all-time favourite poem and I try every day to live my life by it.

Around 8am this morning, I anticipated being in the middle of deepest Wales, holed up in a little hotel not far from the foot of Snowdon, enjoying a celebratory breakfast with the 3 Peaks team and our nearest and dearest who were all coming out to join us.

Instead I woke at home, in my own bed, many hundreds of miles from where I wanted to be and feeling pretty rubbish about it, if I’m honest.

But, straight from my Life According To Kipling playbook, I’m off out for a celebratory breakfast with one of the team and their wife, both great friends who’ve been hugely supportive through the whole crazy rollercoaster of the last few weeks.

I am facing disaster and treating is just the same as I would have the triumph of completing the 3 Peaks. By celebrating I’m telling whatever higher power has deemed it necessary to prevent me completing it for the 2nd year in a row that I will not be bowed, I will not be cowed and I will never stop appreciating, loving and making the most of the gift I’ve been given. Wales or Wellingborough, it makes no difference to me.

If this post means anything to you, please share the sign-up link for the organ donor register for the trek – http://www.bit.ly/oli3peaks – by copying and pasting or sharing the link to this post. Help us make sure everyone who needs it gets the second chance I’ve had.

The plan was that by this time today ((around 4.30pm as I write this)), I should have been arriving at a hotel in Scotland with the rest of the 3 Peaks team to prepare ourselves to tackle the immense 3 Peaks Challenge this weekend.

As we all know, other things happened to get in the way of that.

I’m absolutely gutted that I’m not going to be with Ben, Dave, Gary and my bro this weekend and that I’m not going to feel the immense sense of achievement (and exhaustion) on Sunday morning that I anticipated feeling. What makes it worse is the fact that this is now 2 years in a row when my health has got in the way of the very same challenge, with the very same team of people.

I’ve dealt for many years with the ups and downs of my health, but I’ve always managed to come out of things with a positive spin and so it is with this. Despite thinking that after transplant I wasn’t going to face these kinds of disappointment, I’m finally starting to hear the sense in my own words, spoken at almost every event I speak at: transplant is not a magic bullet, it’s simply exchanging one set of problems for another.

Don’t get me wrong, there is nothing – NOTHING – that I would change about my life right now. Transplant has saved and transformed my life and allowed me to be the person I always wanted (and believed) I could be. It’s allowed me to do all the things I’ve always wanted (and believed I could) do.

Events like the things that have been happening recently serve only to remind me that although I have downsides, so does everyone else. And thanks to my transplants, my troughs are a hell of a lot shallower than before – and than many other people deal with every day – and my peaks are a hell of a lot higher.

So it leaves me simply to suck it up and move right along – knowing in my heart of hearts that not going this weekend is the right decision and knowing that something else will soon come along to excite, entice and energise me as I move forward.

As a result of recent events, my life is going through a lot of changes, but they are all enormously exciting and I know that the best times of my life lay ahead. It’s time to knuckle down, get on with it and start taking my first steps forward to the brave new world to which I’m being introduced.

By now you’ll have read the other two posts and, possibly, seen my Tweets on the subject, too, but I’m home safe and sound after the craziness of the preceding weeks. Here’s what happened on the final day of investigations at the John Radcliffe in Oxford.

At 8.30am I was informed I’d be going to the angio theatre at around 11am to get everything sorted. 10 minutes later I was told it would be 9am instead. A rapid shower and gowning later, and I was riding my bed down the corridors to the radiology department, where I was met by an assortment of nurses, doctors and, I think, and anaesthetist (although she could have been just about anything).

The nurse checked out my groin and deemed that I’d not shaved well enough, so gave me a rapid going over with a dry razor, following which I was immediately sterilised with surgical alcohol. Yes, yes it did hurt. A lot.

Next came the ironically-painful local anaesthetic injections around the artery in my groin, followed by a frankly disconcertingly painful and uncomfortable pull, pushing, pressing and scratching as the doc inserted a fairly large tube into my artery and begin sliding the angio tube all the way in and up to the base of my neck.

Angiograms are very weird things, where you’re lying flat on your back with an X-Ray machine immediately above your face and one immediately to the side. As they inject the contract dye into you head to highlight the blood flow – and thus show any clots or aneurysms – you feel a hot rush that’s unlike anything you can describe beyond the feeling you get when you tense really hard to make yourself go red in the face.

What’s even weirder with a full angio, as opposed to the CT Angio I spoke about last time, is that they pinpoint very specific areas of your head, meaning you get the flushing sensation in extremely localised areas in your head. It’s incredibly bizarre and although not unpleasant, it’s not something I’d like to repeat to often. Or at all.

Back on the ward, I felt the familiar headache forming, but this time it was accompanied by a significant nausea as well and before long I was beside myself with pain and the urgent desire to throw up, coupled with being forced to lie flat on my back for 6 hours after the procedure to prevent the artery opening up again once it had clotted.

It turns out, although I was unaware of it at the time, mostly through sedative doses of Codeine and Tramadol for the pain, that I’d reacted to the dye they had used. Whereas the CTA had only cuased a headache, the far more significant doses of dye used in the full angio had resulted in a not-insignificant reaction on my part. The only good thing to come from it is that I don’t really remember a lot of it too clearly.

In the end, I improved quite rapidly once I was put on IV fluids and began to eat and drink again and I was discharged the following day with two conflicted reports on what had happened.

The registrar was of the belief that the whole thing had been caused by acute sinusitis and that the LP result had been a false-positive. This is a diagnosis I struggle with having seen my mum suffer through horrendous sinusitis in the past and not recognising a single symptom she described in myself. However, because it was the only thing that showed up on the CT ((ie, that my sinuses were full of muck)), I think the Reg decided to put it down to the visible.

The consultant, on the other hand, strongly believes that it had, indeed, been a sub-arachnoid haemorrhage, caused not by a ruptured aneurysm as is most common, but by a burst blood vessel that was so small it obliterated itself in the process, leaving no evidence whatsoever for the scans to pick up – something that happens in around 15% of SAH cases, she told me.  Her main evidence for this was based on the Xanthochromia found in the LP – a type of cell formed when red blood cells expire – which she doesn’t believe would have formed in the CSF through a badly-performed LP as it takes too long for the RBCs to break down to that stage.

So, essentially, I left the hospital with a clean bill of health, but feeling worse than when I did when I was transferred.  I’m now on an anti-convulsant drug to stop the blood vessels in my head spasming and causing more problems. I’m assured this is purely a precaution and the course only lasts 3 weeks, so I should be back to normal soon.

More on the changes that have been forced on my by this latest hospitalisation later in the week.