Today is my 17th second birthday: it’s been 17 years since I took my last breath with the lungs I was born with.

Every dawn brings a new day I wouldn’t have had were it not for my donor – and were it not for their family, who chose in their grief to give others a second chance that their parent, child, sibling didn’t get. I feel honoured every day and I hope I continue to honour them in turn.

However, I’d be lying if I didn’t say that there’s something about today that feels different and I’m not sure why it’s this particular year. All of the usual thoughts and feelings of joy, gratitude and celebration are there, strong as ever, but there is something else layered on top: I miss people.

When we held Laughter For Life II seven years ago, we worked out that I’d lost about 20 friends, a rough average of one every two years of my life. After my friend Kirstie died, I simply disconnected from the CF and transplant community; I couldn’t do it any more, it hurt too much. And for the first time since I was a teenager more than five years passed without losing anyone.

Grief behaves in mysterious ways. Like an ocean, it can sit calm and placid then twist without warning and begin to roll and roil, then thunder and crash, terrible and terrifying. Moments after you think you’re fine, you suddenly find yourself drowning again.

That’s where I am today, being buffeted by the malevolent seas of grief. I miss my friends.

I miss getting random texts from Emily about whatever scheme she was about to rope me into. I miss logging onto social media hoping to see comments and posts from the Jesses or Tor. I miss jumping into treatment discussions with Toria on the message boards back when they were polite and supportive. I miss getting CDs in the post from Anders as he tried gamely to further my musical education. I miss all the hours of laughter as our collective humour blackened in the face of unimaginable, unstoppable forces rising against us.

Today’s a day for celebration. I’m still able to enjoy it for the wonder it is. I’m still here and I’m here because of one person who I can never thank. Even when I feel unworthy, I’m honoured by the life they’ve given me.

But I also have a deep sadness in my soul that I can’t celebrate this with my friends. And I’m reminded of the lyrics from Les Miserables:

Oh my friends, my friends forgive me
That I live and you are gone.
There’s a grief that can’t be spoken,
There’s a pain goes on and on.

When we find people we can respect while respectfully disagreeing with them, we grow. We grow because rather than taking offence at their views or thinking negatively about them as people, they help us challenge our own beliefs simply because they’re different.

Difference is important. Difference creates challenge. Challenge is what powers the world.

“To fly we have to have resistance.”

Maya Lin

Without difference, without resistance, without challenge, nothing changes. Not individuals, not organisations, not countries. Only through opposition does anything shift.

Once we open up and take in opposing views one of two things happens: we change our mind, or we understand our own views better.

I subscribe to Seth Godin’s blog because I respect him and love his writing. But I also disagree with him often. When one of his posts lands in my inbox and I disagree with it, it makes me stop and ask myself not just why I disagree with it but what I actually believe (and why). 

When we find people who challenge us our thoughts, views and beliefs clarify in a way that helps us grow and move forward.

I hope you disagree.

When we have decided which boulder we’re going to put our shoulder to, the next question is whether or not we’re able to shift it on our own. 

The size of the boulder is directly proportional to the size of our ambition. The bigger our goal, the bigger the rock.

Our ability to move the rock is inversely proportional to the size of the boulder. The bigger the rock, the hard it is to shift.

That means if our ambitions are lofty, we cannot hope to move the boulder without other people putting their shoulders to it alongside us. We can’t be proud, we can’t be shy, we can’t be ashamed to say that we need help to achieve our goals.

If the rock looming over us is the one we really want to push, other people’s shoulders are the most important part of our efforts. 

Share your work, even when it scares you. Pick up the phone, even when it scares you. Tell someone what they mean to you, even when it scares you. Apply for that job, even when it scares you. Be honest with someone, even when it scares you.

Yesterday I sent the first draft of the first three chapters of my first ever novel to my wife and my brother. I’ve never written anything like this before and I’m not ready to share it yet. I’m not ready for other people to read it. I’m scared of what they’re going to say.

Which is why I had to share it.

Fear holds me back more often than I’d like to admit. It holds me back even in those times I refuse to admit to myself that I’m scared. In those times, fear manifests itself as perfectionism, it surfaces in excuses. Those are the times I need to share my art.

Not despite the fact that it scares me, because of the fact it scares me.

Doing things, even when they scare you, is a mantra I’ve had for myself for a long time. It’s also one I rarely listen to. So I’m trying harder.

When I’m pottering around the house, making tea, washing up, vacuuming or any of the other household tasks I don’t do often enough, I listen to podcasts. Yesterday while doing some extended kitchen cleaning after a messier-than-necessary roast chicken dinner, I was listening to Tim Ferris’s latest podcast with Seth Godin and it helped me to realise that I need to move on from my current state of fear, confusion or just plain laziness and start doing the work.

I frequently battle with Seth’s work. Some of it is inspired, inspirational and intrinsically motivational. Other books and posts seem more polemical, more dictatorial, more out-and-out instructional – the kind of thing that I bump up against. But it always makes me think, which is why I’m so addicted to listening to him talk.

What stuck in my mind listening to this conversation was the same thing that stuck with me in the first conversation Tim had with Seth on his podcast, the same thing that stuck with me the second time Tim had him on the podcast and the same thing that stuck with me reading Do The Work 1 , which seems like the least imaginative and best book title of just about any book you’ll find on the virtual shelves of the Kindle store (if, like me, visiting physical book stores it out of the question at the moment). The idea of showing up every day, doing the work and not making excuses for failing to do something every day has always, always resonated with me even as I’ve consistently failed to do it.

“Just do it” may be one of the best-known and most cited inspirational instructions in the world, but it’s also an inappropriate attitude, Seth says. “‘Just do it’ implies ‘what the hell’, ‘it doesn’t matter’ [which] pushes you to be a hack who’s not responsible for your own work.”

By contrast, “merely” doing the work takes us away from time spent catastrophising the work and its results. And catastrophising is what I do best, both in work and in life. I’ve shied away from continuing to post on here or on my YouTube channel because I’ve been spending too much time worrying about what image I want to project of myself. I’ve worried about how people will see me. I’ve worried about people disagreeing with me. I’ve worried about a lot of things and I am still worrying.

But the worry and the outright fear is stopping me from doing anything. It’s paralysing. So the time has come to start trying2 to spend some time everyday merely doing the work. Merely spending time each day on an act of creation, whether that’s written word on here, a video to share on YouTube or working on the edits to the novel I wrote during lockdown that I’m feeling massive resistance towards.

I don’t want to be afraid of making or sharing my art any more. But the only way I’m going to defeat that fear is, paradoxically, by making and sharing my art.

This post, then, is the first step. One step, every day, will eventually lead me somewhere. Where that is—for now—I’m not sure. I simply know that I can’t wait until I’m certain of my destination to set out because I’ll just spend all my time poring over maps and weighing up the options. Perfection will never happen. The sooner I understand that, the sooner I’ll be able to keep on keeping on.

This might not work. But it also might.

1. This is an affiliate link, which means I get a small amount of money if you choose to purchase the book. If you’d rather not do that, you can use this link instead. [↩]
2. Note: I try a lot of things that don’t work, so who knows where this will end up going? [↩]

For years now (more than a decade, in fact), I’ve lived by the Smile Through It mantra. No matter what happens in life, you can always find one thing each day that makes you smile and hold on to that one thing as a sign that things will get better.

This week, for the first time in a long time, that mantra no longer reigns. For the first time in a long time, I’m not OK.

And this is something I need to share because  in this world of heavily filtered, idealised lives that we all share online it’s too easy for me to pretend everything’s OK and that I’m coping and that I can still smile. I’ve been through mental health battles before, both with my own head and those of several of my loved ones, and it’s hypocritical of me to advocate the need to talk about the difficult times if I’m not prepared to do it myself.

I need to share this because I need people to realise that it’s OK to not be OK sometimes.

Empty chairs at empty tables

On Friday, K and I woke up at 5am to drive to Exeter for Kirstie’s funeral, which was amazing. It was the very definition of a celebration of life and I’ve never had so much fun or laughed so much at a funeral in my life. It was everything Kirstie wanted and it was delivered beautifully.

Twelve hours after leaving the house in the morning, we were back home again, and as I sat on the sofa I realised something that made me crumble: I’m the last one.

More than a decade ago, as I was starting my journey towards transplant, in the days before Facebook, Twitter and other instant-connection platforms that we all now have, there was a band of merry lifers with CF doing what we could to jockey each other’s spirits, connecting on forums, via text message and in some cases living fully-retro and sending stuff to each other in the post. With stamps and everything.

As I sat on the sofa on Friday night, I realised that Kirstie was the last of that group for me. She was my last connection to that world of support, shared experience and shared hopes for the future. Every single one of that group I had stayed in touch with has gone.

In that moment, thinking of the fact that when things get tough in the future — which we all know they will for me some day — I won’t have anyone to turn to who’s been through it, I broke down.

So what happens now?

The next few days passed in a haze of the most intense grief I’ve felt for years. Nothing made me smile, nothing motivated me to get off the sofa, out of bed or out into the world. Things I’d always enjoyed became the last things I wanted to do.

On Monday I went into work and rapidly realised that my mind simply wasn’t there. So I did one of the hardest things I’ve done for a long time: I sat down with my boss and I said, “I’m not coping,” and I left the office (with his blessing) four days early for my Christmas break.

Things are getting better. I can smile again, I can laugh, I can hear all my friends getting angry with me and laughing at me for moping about. But the grief is still present, it’s still pervasive, intrusive, destructive. It comes in waves and I’m just learning to ride those waves.

I can see that things will get better. I know that I will recover, that I’ll feel joy again in the same way I did before. I know I’ll feel the desire to create memories in honour of that amazing group of people, rather than languish in the sadness of what’s been lost.

But right now, I’m not coping and I don’t know how to cope. I don’t know how to regulate the waves of grief, the bouts of sadness or the depths of despair that my brain sinks to at regular intervals.

Bring on tomorrow

What I do know is that everything I’m feeling right now is OK. That it’s OK to not be OK. That it’s important for me to talk about this, to share this, to be open, honest, vulnerable and fragile about it.

Because it’s not OK to hide it. It’s not OK to think I can just bravely plough through it and present my happy face to the world like nothing has happened. Because that helps no one: not me, not other people experiencing the same thing, not my friends and family who will think that everything’s fine.

Because losing this many friends, going to this many funerals, struggling to remember all of them and when they happened and what their faces looked like and sometimes even their names, is not OK. And will never be OK. And shouldn’t be OK.

January was a terrible start to 2015, but when it comes to the habit change I was looking for, I actually achieved quite a lot and am now meditating regularly.

For February, I’m looking to upgrade my writing practice and stop myself slipping, so I’ll be trying to get into the habit of writing at least 500 words per day.

Writing has taken something of a back seat for me in recent years, subsumed beneath the dense foliage of the working world where the lengthiest pieces I compose are emails on strategy and execution. I miss writing for the joy of writing, I miss writing to solve problems and I miss writing to get people to think, to provoke reactions whatever they may be.

Writing is where my passion lies, that’s where my talent lies, where I’m happiest – pouring out words onto a page to eventually engage and impact, in some form or another, the eventual reader, listener or viewer.

So this month I will be writing something every day. I don’t know yet whether I’ll come to focus on just one writing project or flit from thing to thing, but whichever it is, I will make progress one day at a time, 500 words at a time.

The only rule I’m setting myself is that the words I write must be easily countable (ie, written in a writing app of some kind) and therefore social media posts don’t count and nor does journalling at home, which I hand-write. Emails definitely don’t count.

If things go to plan I’ll be back here in 28 days with at least 14,000 words written for something, somewhere. Stay tuned!

I don’t normally do review posts like this, but today I somehow feel it’s necessary.

I’m tempted to say ‘good riddance’ to 2014; the last 12 months (plus a few days at the back end of 2013) have possible been the worst of my life, filled with such depths of sadness as they were, not to mention other rocky patches I stumbled through during their course.

But that’s not the nature of this blog and it’s not my nature either. I may be wallowing in sadness a little longer than I usually might, but I’m not one to rail against the world. I don’t believe in a world with no redeeming features and I’ve continued to try to find life’s little silver linings, to smile through it all.

In that spirit:

This year I lost 4 friends:

Kerry was a friend I first filmed in 2012 who told her story so eloquently and beautifully it even made me tear up, which is tough for someone who has seen and lived through so many stories of life with CF.

Anders was a distant but no less sturdy rock for me when I needed support. Twice, when I was having a rough patch and knowing that I had zero music knowledge, Anders made me a mix tape (on CD) and sent it down for me to stick on to keep me tuned into the world around me.

Emily was the friend who was always one step ahead of me.

And Eugenie was someone who seemed never to ask anything of anyone in life, to offer nothing but her heartfelt support, love and affection to everyone she came into contact with, and to find out today that she’s no longer with us is almost too much for me to bear.

This year I saw my niece turn 1:

Isla is everything I could have dreamt of in a new niece, the perfect addition to the growing cadre of nieces and nephews that light up our life. And she’s the niece I never thought I’d see and, without the kindness of one person and their family, I never would have.

This year I lost my way:

Halfway through the year, after losing three friends in 4 months (Gareth, Kerry and Anders), I didn’t know what to do with myself and everything seemed a bit pointless. But having my wife at my side to guide and support me, not to mention my wonderful colleagues at World Vision, I got through the tough times and found my way again. Unfortunately for my colleagues (or fortunately, depending on your point of view…), it would be elsewhere.

This year I found a new home:

When I saw a job description looking for a master storyteller to join the charity whose work over the last 50 years is largely responsible for me being here today, it felt utterly perfect. How could I not put my name forward for it? Again, thanks to encouragement and support from my wonderful wife, I applied, was interviewed and was given the job. What a way to give back to the people who’ve helped me be here and what a way to help pave the way to a brighter future for all those going through what I went through.

This year I learned how to make mistakes (and recover from them):

K and I upped sticks to move to St Albans to be closer to the CF Trust office in Bromley and make the commute a little easier. We found a lovely little flat at the top of the high street and roped in a cohort of friends and family members to help us shift all our stuff from our 4-bed house to our 2-bed flat.

And then we realised how big a mistake we had made. We were miserable, and making each other miserable. So we reversed our decision. Quickly and quietly we gathered our things and five weeks after we’d moved out, we took ourselves back to our lovely Wellingborough dwelling and I discovered that a longer commute is worth the time if you come back to a place that feels like home.

This year I learned that grief is all-consuming, but that it will pass:

From moment to moment I’m am still struck by enormous pangs of pain in missing Gareth, who was such a big part of our lives and whom we loved so much. And as each death this year has started to mount up it’s become harder and harder to take.

But as I sit here and hope upon hope that 2015 will be kinder to us and to our friends and to our family than 2013 and 2014 have been, I recognise that all these things are fleeting. More importantly, all these things, these experiences, are what make us who we are, are what make me who I am and are what make each and every moment we share with the people we love most the most important moments of our lives.

Hug your loved ones close in 2015, and give thanks for the time we have with them. And if they are no longer here to hug, raise a glass and a smile for the light they brought, not for the shadow that remains in their wake.

Lots of things will be written and spoken of Emily Assen (neé Thackray) in the next few days and weeks. She died yesterday after a second double-lung transplant proved too much for her body to withstand.

Emily’s unique ability – using unique in its literal sense, as I’ve never come across anyone with the same gift – was to make everyone she ever came into contact with feel like they were the most important in her world.

There are dozens of people who will be grieving the loss of a best friend today, because that’s who she was to everyone: selflessly sharing her love and compassion for the world with all she brushed against and, in the process, making everyone she touched feel special, feel like they mattered. She made a difference.

Equally, everyone who knew her will have their own ‘Emily’ with whom they spent time, shared laughs and cried when it was warranted. We all new a different friend who gave different things to our lives.

My Emily came into my life in the early days of the internet when I first discovered the Cystic Fibrosis Trust forums: she was already there and dispensing support and advice as needed. I struck up a friendship with her and with some of the other frequent posters and we supported each other through tough times of losing friends that we were terribly close to. It seems nothing much changes in a life with CF.

When she set up the organ donation campaign (now charity), Live Life Then Give Life, with her great friend Emma after the loss of more than one mutual friend on the waiting list for transplant, I offered to help in any way I could. I ended up being one of the first Trustees of the charity and being part of the team that one Best Campaign Team at the 2008 Charity Times Awards and Best New Charity the following year.

My Emily was always one step ahead of me on my CF journey. She was the first of us to start needing supplementary oxygen. She was the first to use a wheelchair. She was the first to have a lung collapse. She was the first to be assessed for transplant and, thank God, the first to receive it. She was the first to be married after her transplant, and the first to have serious complications. Now, she’s the first of the two of us to go.

What became indelibly unique, thought, was that everything she went through became a source of help and information for others. She never hid away from anything and always used her own lived experience to make it even a tiny bit easier for others going through it. She supported me as I took every step and misstep she took a few months further down the line.

The day I finally got my transplant call I remember sending her a message and getting an immediate phone call back.

“Take some paracetamol now,” she told me.

I wasn’t sure if I should, but she countered immediately, “The stress of the situation might raise your temp and if it does they won’t go ahead. Take two paracetamol now and it will drop your temp if you have one, but it won’t mask anything more serious that could be a real contraindication.”

I took them. I passed the tests. I got new lungs.

The story that sums up Emily, though, came through on my Facebook last night from one of my oldest friends and was one that I’d never heard before. This stands as testament not only to her willingness to help and support anyone and everyone, but also to be humble and quiet in going about it.

“She was so wonderful when you got your call, patiently, calmly keeping me informed about the stages, what to expect, what were the good signs, what to worry about & what to cheer.

“All the way through your surgery and recovery she stayed in touch, answered my many emails and sent me random messages asking how I was doing – she had volunteered herself to essentially be my support as I didn’t want to bother your parents or K too much with my need for information and updates. It meant such a lot to me and I was incredibly appreciative knowing she was a message away to answer a question or calm a worry.”

That’s Emily: friendly, warm, generous and patient. And not just my Emily, that’s everyone’s Emily.

Em, you will be missed far more than most of us can understand, but we remain ever grateful for the joy and happiness your brought to our lives, for the connections and friendships you forged that will last long into the future, and for the blessing of finally understanding one of my favourite quotes:

“She was a line of poetry in a world of prose.”
Polly Toynbee

Last week I had a Nissen fundoplication. Exciting, huh?

It’s an operation that wraps the top bit of your stomach around the base of the oesophagus in order to prevent stomach acid (and anything else) from travelling the wrong way up and, potentially, creeping into the lungs where it can do a fair amount of damage.

That is to say it’s a fairly major operation to correct a potentially very serious problem.

I’m now the owner of five (count ’em) new holes in my stomach, taking my torso scar-count to 13 – awesome!

I also currently have scars healing both on the outside and also on the inside. Scars healing internally is the weirdest feeling every, because it hurts and is uncomfortable, but you can’t actually see any of what it is that’s hurting you. It is, quite, genuinely, one of the weirdest sensations that I’ve ever felt. I also have no idea how well (or badly) it’s healing and when the pain may subside.

So I’m now recovering at home and trying my best not to go out of my mind with boredom or let my brain get too over-excited with creativity while I’m largely unable to act on it.

Hopefully the process won’t take too long.