Monthly Archives: November 2012

“Here comes the rain again,
Falling from the stars,
Drenched in my pain again,
Becoming who we are

As my memory rests,
But never forgets what I lost,
Wake me up when September ends”
Green Day, Wake Me Up When September Ends

Over the years I’ve spent with K, first as friends, then as partners, now as husband and wife, she has endeavoured with varying degrees of success to educate me musically.

My musical education was incredibly poor, largely thanks to my older brother’s terrible attraction to boybands no one has heard of and my dad’s predilection for folk and country.

One of the bands K introduced me to quite early on was Green Day.

The song quoted above became something of an anthem for the two of us, but not for the reason you might think. In fact, it was because I so vehemently disagreed with the sentiment of the song, despite how much I love it.

Everything shapes us

As the lyrics say, we become who we are through the experiences we endure: no matter the joy, the pain or the suffering, it makes us the person we are. It may not be a nice thing to acknowledge, but it’s true.

One night when I was really struggling, K turned around and quoted the song at me, saying she just wished we could both wake up when September ended. But I disagreed.

The metaphorical September we were living through was horrendous, for sure – the tiredness, the illness, the constant bouts of IV antibiotics and hospitalisations, the hope and lost hope of the transplant that may or may not be right around the corner. I also knew, though, that September might be all we had left together and I didn’t want to miss a minute of it.

All too often we are too keen to escape bad experiences – and with good reason – but actually, it’s these Septembers of our lives that make us who we are, that shape the world we live in and that give us the strength we need to carry on, get tougher and to know that whatever life throws at us we can endure, no matter what.

And for people on the transplant list, there is no guarantee that there will be anything to wake up from if you choose to skip September.

*****

Smile Through It: A Year on the Transplant List went on sale on Amazon Kindle yesterday. Chronically the final year before my life-saving double-lung transplant it’s just 99p and, in my humble opinion, quite a good read. Buy it here. Tell your friends. And sign the Organ Donor Register.

Photo: Sister72 on Flickr

Five years ago this morning I was on my way out of surgery and into 4 weeks of the hardest struggle I’ve ever known. A struggle so deep, so intense, at times dispiriting and verging on depressing that I never thought I would come through it.

But when someone else has died and you’ve been granted the gift of a second stab at life, you don’t give up. You don’t quit, you don’t say you’ve had enough. You fight. Hard. With everything you have.

Five years later, I still cannot adequately express the gratitude I feel. There are no words, no images, not even the right song to share the immensity of the feeling.

Instead, I’ve chosen to release a book, something to highlight just how hard everything that came before was. And, in doing so, it made me realise that the 4 weeks of struggle I went through immediately after my transplant were nothing compared to the 12 months that preceded it.

Smile Through It: A Year on the Transplant List – consisting mainly of my own blog posts over the year leading up to the big day and highlighting just how hard it is to live in the constant shadow of death – hits Amazon Kindle bookshelves today, soon to be followed by ePub and hard copy versions.

About the book

The journey I took over the 2.5 years I waited and the year documented on this site and in the book was not a pleasant or fun road to experience, nor one I would wish on the worst of my enemies. That’s not to say you can’t still have fun (as I hope the book shows), but it’s not the kind of thing I’d recommend.

The text has been left almost entirely as-is from the blog posts themselves, save for fixing a few glaring spelling errors. I could have edited more heavily, re-written sections to seem more prescient or circumspect, or removed several of the more mundane episodes, but I chose not to because what I think readers will gain, over the course of the 12 months-worth of posts, is an insight into the true roller coaster lifestyle that anyone awaiting a transplant must endure.

The book covers some of the most exciting times in my life – raising over £20,000 production managing a comedy gig for Live Life Then Give Life, being invited on to Radio 4 and speaking to national newspapers about organ donation and transplant.

But it also covers the terrible toll all of these took on my body and my brain. You’ll see how periods of activity are followed all-too-closely by enforced inactivity and the frustrations and anger that comes with them.

I hope more than anything that this book – like this blog – will serve to give people an illustration of just why it’s so important to sign up to the Organ Donor Register.

You’ll also see just what a dim-witted, self-indulgent, melodramatic, pretentious muppet I can be.

Hopefully, you’ll end up smiling through it with me.

How you can help (if so inclined)

There are 5 things you can do to help me spread the word about today’s release, if you’d like to:

1. Sign the Organ Donor Register (or your country’s equivalent) – the reason I’m releasing the book and writing this blog is to raise awareness of organ donation, so sign yourself up if you don’t do anything else. (Links to registering in the UK, US, Australia and New Zealand. If you have others, please let me know so I can add them)
2. Talk to someone else about organ donation – it’s only through conversation that we learn of each other’s wishes and help save lives through awareness and openness.
3. Talk about the book to others and share the link – costs you nothing, but may bring a little light into someone else’s life (I hope).
4. Buy the book – obvious, I know, but significant (and it’s less than a pound!).
5. Once you’ve read it, and if you liked it, leave a review on Amazon to help guide other readers. It take around 5-10 minutes and can really help in spreading the word into the wider Amazon readership.

About my ego

Releasing a book of any kind is something of an exercise in ego, even more so when it’s self-published.

I can’t deny that I hope people will take notice of this book, that I want people to talk about it, share it, encourage other people to buy it. I can’t deny that I want people to read what I’ve written and that releasing some of the posts from this blog into the world in this way is a great way to achieve that.

I also completely understand those who feel that it’s my ego getting the better of me and putting something out there that people can read the vast majority of – completely free – right here on the blog.

But it’s also about reaching an audience who don’t read blogs, who haven’t visited here and who possibly never would. It’s about spreading the message of organ donation as far and wide as we possibly can.

I’ve lost far, far too many friends who’ve succumbed while waiting for a transplant when it doesn’t have to be like that. Arguments about Opt-Out systems and changes in the NHS aside, if everyone in the UK who support the idea of organ donation signed up to the Organ Donor Register, we wouldn’t face 3 needless deaths every single day.

For my donor

I was saved by someone I’ve never met nor will ever have the chance to thank. I’ve been given a second chance to live a life of happiness, fulfilment and joy when one family have had their happiness untimely stolen from them.

If I were to sit and do nothing to show how enormous this unknown benefactor has afforded me, I truly believe I wouldn’t be able to stand proud and say I’d made good use of the time they granted me.

I would love for you to buy, read, enjoy and share my book. But if you don’t want to do that, let’s at least be talking to our loved ones about our own opinions, views and wishes relating to organ donation.

We can all be the hero of someone else’s life; don’t let that chance got to waste.

It’s fair to say I’ve been looking forward to this week for quite a while now.

As I explained on Friday, reaching the 5 year post-transplant mark is a significant step for anyone. It gives a remarkable psychological boost that – for me at least – makes me feel like I may be approaching normal. Ordinary. A regular person.

But, the truth is, I want to be more than normal. I relish abnormality – I want to be as different, as unique and as extraordinary as I have been up to this point. I don’t want to let 5 years pass and think it’s OK to let it rest.

I want to tell the world the impact that my donor has had on my life.

I want to show the world the power of transplantation.

I want to help people understand how important being registered to be an organ donor is and the lives you could save and transform.

I want to be remarkable in the truest meaning of the word.

I want all of these things, but more than anything, I want you to know that extraordinary lives can be lived by all of us every single day. With a deep breath, a smile and a kind word to those around us, we can all have an impact. By signing the Organ Donor Register, we can all leave a legacy. By making sure our loved ones know our wishes, we can all be a part of something bigger.

Tomorrow, on my 5th second birthday, I will be releasing Smile Through It: A Year on the Transplant List on Kindle, closely followed by ePub and physical versions, too. It’s designed to give people an insight into just how hard it is to do nothing but sit and wait.

I want you all to remember that there are too many people in the world with their lives on pause while they wait.

Don’t leave your life on pause; find the play button and let’s make sh*t happen.

Photo: Brian Gurrola on Flickr.

Next week marks 5 years since my transplant. More than that, though, it’s a key landmark on my post-transplant journey. I stop being “a statistic”.

50% of people waiting for a double-lung transplant will receive one. The other 50% will die. I was in the lucky 50%.

25% of people who undergo a double-lung transplant will die within the first 12 months. I was in the lucky 75%.

50% of people who undergo a double-lung transplant will survive to 5 years. I’m in the lucky 50%.

After 5 years, the stats pretty much stop. We all know one day it’ll get you, but to all intents and purposes, everyone has stopped counting.

It’s a big deal.

Planning

Before my transplant, for most of my 25 years, I hadn’t planned beyond the next 12 months. As my transplant got unknowingly closer and closer and I got sicker and sicker, planning shortened to months to weeks to daily ponderings of what I may be physically able to do tomorrow.

I’ve never been able to plan for the long term.

I remember vividly setting the date for our wedding some 18 months in advance and being both incredibly excited and incredibly freaked out by the prospect of planning something that far ahead.

Adapting to planning for the longer-term has been one of the biggest adjustments I’ve had to make in my new life.

New Thinking

Over the last few weeks our little Seat Ibiza has been getting sicker and sicker. It’s at that stage where you’re either going to have to sink a lot of money into it, or get shot of it.

After a service and appraisal of the work that needed to be done, we chose the latter option, which left us on the hunt for a new car.

As we looked around and weighed up our options, we began to think about the life of the 3-year finance plan and what those next 3 years may bring. And the weirdest thing? It didn’t freak me out at all.

It suddenly seems perfectly natural to be sitting here thinking about needing to buy a car that was big enough to fit a large quantity of filmmaking gear in as I develop a plan to increase the amount I’m producing.

It suddenly seems fine to buy a car that’s got great fuel economy to get us good mileage around the country on our mini adventures we’re wont to take.

It suddenly, and strangely, feels fine to know that we can happily start a family without needing to upgrade the car to fit in car seats.

And I cannot tell you how odd it feels that none of that feels odd.

Five Years Gone

Time flies, they tell you, when you’re having fun. And how the last 5 years have flown.

I’ve had my ups and downs, sure, but none of it would have been possible without the generosity of my donor and the courage of their family. You’ll hear more from me on that subject next week, no doubt, but for now suffice it to say that every time I start thinking forward, start planning ahead, start thinking about 3-years deals and 5-year plans, I say a quiet prayer of thanks to my donor for allowing me to even consider thinking about thinking.

What are you planning? Where do you hope you’ll be in 5 years? Let’s look forward together and plan for a better, brighter future.

I’ll admit it, I’ve been neglecting just about every part of my blogging and online world for the last six weeks.

I’m not sharing the same amount of great content I normally share on Twitter, I’m not working to create kick-ass videos on YouTube, I missed an entire week of blogging last week and Saturday was the first time I’d managed to ping an email to my mailing list in over a month.

I’ve been pretty rubbish, all told.

And all in the process of building up to a book launch that should have seen me prepared with a detailed plan and strategy as we raced towards publishing date. Being out of touch with the people who like to read my stuff is pretty spectacularly counter-productive.

But – and here’s the rub – this has been one of the most valuable periods of my life. Why? Let me tell you.

The Lessons

I’ve learned a huge amount about myself and about you, dear readers. Or rather, those people across all platforms who interact with my by reading, talking and sharing my stuff.

Let’s go through them one-by-one.

1. I can’t do it all

Much as I may want to, I can’t commit myself to multiple projects at the same time and expect to get anywhere near decent results.

I used to tackle a million projects and wonder why I never seemed to ship. As a freelancer, I’d work from my study at home and have 4 different windows open on 4 different projects and wonder why nothing was getting done despite how hard I was working on it all.

Now that I’m in the office 9-5(ish) with World Vision, my project focus has had to change. I’ve had to get more organised both at work and at home. At work, I can stay across my workload perfectly well, but juggling multiple projects at home just isn’t happening. I’m too tired and my mind is too taxed during the day to keep that many things going.

Which means I need to pick my projects more carefully and choose where my focus will rest from day-to-day and week-to-week.

2. Prioritising is easy with limited energy

I used to be terrible at prioritising. I’d work all hours to get everything done and end up achieving very little, losing a huge amount of time to procrastination.

Now my job taxes me so much during the day that my energy for my own projects in the evenings and at the weekends is severely limited and I know I can’t tackle everything (see Lesson 1!).

The tiredness and lack of brain-power makes prioritising easy now; if I only have the energy to focus on one or two things (checking and responding to project-based emails and writing this blog post, for example), then that’s what gets focused on – that becomes the priority.

3. I’m capable of more than I thought

Including change.

After my first two weeks at World Vision, I began to fear that I wouldn’t have the energy to do my job properly, let alone keep my own stuff ticking over in the background.

As the weeks have gone on my body has got more and more used to the early mornings and long(er) days and I’ve learned how to manage my energy throughout the day to give me enough left in the tank to cook a healthy meal in the evening (as opposed to junky take-out) and get some of my To Do list done.

It’s been a real adaptation process after almost 5 years of freelance employment to suddenly be an employee again, but the fact that I’ve managed to adapt and grow into my role and my desires to do more outside of work has shown me that you really can have the best of both worlds if you want it.

4. There is too much crap on the internet

I know, it’s pretty obvious, right? But I used to think it was utterly imperative to my personal and professional development that I read all of the 100’s of blogs and articles that people shared on social media or that dropped into my RSS reader.

Without the time to sit and procrastinate while reading through my Google Reader list, I’ve grown to understand that I can cope without reading absolutely everything. I know my job, I know my industry and I know that I’m good at what I do. I don’t need to read a repetitive series of articles about the best use of Twitter for burger companies; I only need to read the things that either truly inform or inspire me.

That’s it.

5. I care less

Not about everything. Not about most things, in fact. Working for an organisation like World Vision means I understand so much more of the poverty and hardship in the world – things that I’m blessed not to be directly affected by, but that I care more deeply about than ever before.

What I care less about is the frivolous things like how people see me, what people thing of the things that I write or share.

I used to be so caught up in whether or not people liked me or cared about what I wrote that I was scared to voice opinions that I thought people might disagree with.

Now I’ve learned that you can’t please all of the people all of the time and there are some people you just can’t please at all. No matter what you do, that won’t change, so all I can do is try to create stuff that I like and work on the basis that some other people might like it, too.

What you can take from this

Frankly, whatever you want.

I’m no sage, no guru, no master of all that is wise.

I’m not here to tell you how to live your life, how to make yourself better or how to do everything you ever wanted. I’m here to tell my story, my way, in my words and if you like it, learn from it and value it, read on. If not then, hey, it’s cool, no worries – go find what you’re looking for elsewhere.

No grudges, no hard-feelings, no ill-will. Just an understanding that I’d rather you didn’t spend what little time we all have reading a blog that doesn’t add value than reading me just for the sake of making me feel better.

I love to learn and I love what I’m doing with my life; I hope you can all say the same.

*****

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