Archives: life

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.

The highlight of my day was not (surprisingly) the 6 hours I spent in the car driving to Bristol. I do love long car journeys, especially when it gives me a chance to listen to some of my heavily-stacked Podcast queue, but even 6 hours is pushing the enjoyment factor when I’m in the car on my own.

I did however, love chatting to BBC Radio 5Live Breakfast and BBC West Midlands Drive about the rising CF population and the predictions that it could almost double by 2025. Not sure I agree with the numbers entirely, but we know the number of people being born with CF is relatively stable, so the prediction suggests a definite rise in longevity, which can only be a good thing.

This week on Tuesday it was Kerry’s birthday, then Emily’s, then Jess’s. All three of them no longer with us, all three of them succumbing to the ravages of CF and the complications it brings. The fact that we could be looking at a future where no one is dying from CF is incredibly exciting and definitely brought a smile to my face. What better way to mark their birthdays than helping spread the word about our fight to beat CF for good?

For the last two years on January 1st I’ve sworn to myself I’m going to revitalise this blog and do things differently. I haven’t. I’ve spent the last two Januarys and Februarys slowly failing to keep up with a constant schedule, largely because I can never work out what this blog is supposed to be.

So from tomorrow I’m going back to my roots and this will be about one thing and one thing only: that little thing that makes me smile every day, whatever it may be.

Way back in the beginning, that’s all this blog was supposed to be. Some of it was going to be able daily battles (and that’s what ended up in the book), but it was also here to remind me to keep smiling, no matter what.

Whatever happens over the coming months and years, wherever my health takes me and whatever else life throws at me, this blog will be here not only to document the process, but also to remind me when the going gets to its very toughest, that the world is really a very funny place and you have to keep on smiling, because the other options are too dark to think of.

That’s what I’ll be doing from now on. And don’t worry, you’re excused if you no longer want to listen.

Keep smiling!

Everyone has a story. If you’re sitting there thinking to yourself, “But I don’t,” – you’re wrong.

If someone asks you where you were born, do you have any brothers or sisters, what you do for a living, you answer them with the start of a story.

How you got to where you are today is your story. Everything we do in life is part of our story, each individual moment just waiting to be put into the context of a whole life.

So don’t try to tell me you don’t have a story.

How interesting your story is depends on many things, not least how good you are at telling it. In the hands of a masterful storyteller even the most uneventful of stories can be fascinating; the phone book can surpass War and Peace.

But stories also depend on living a life worth telling people about.

That doesn’t mean we all have to drop everything and go skydiving or bungee jumping just to have a story to tell. A life worth talking about is simply a life filled with rich experiences, things that make us grow and develop as people, whether they’re good or bad.

Vulnerability can be one of the most powerful storytelling devices. We’ve all read (and got bored with) stories of people doing amazing things, of achieving incredible heights in their lives, or splashing their success on fast cars and globe-trotting. But failing creates powerful stories, too.

Stories are all about connection – connection between the teller and the listener (or reader, or viewer) – and connection comes from creating emotional empathy. So making yourself vulnerable and sharing the things that haven’t gone so well is something we can all relate to: at some point or another we have all failed.

It’s that connection that I love most about stories. They give us the benefit of other people’s experiences to empathise with and learn from. I get so inspired by other people’s stories and I love to share both theirs and mine with the world.

I would love for Smile Through It to become a place for stories of change, of people who are embracing their second chance at life regardless of whether it came about through a huge, dramatic, external force (like mine), or through sheer force of will where they recognised a need to change and set about doing it.

Do you have a story to tell (see above: of course you do). Email me and let me know; I’d love to share it with my readers.

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.

If you follow me on Twitter, you can’t have helped but notice that it’s been a very busy week, with no less than five pieces of media telling my story during transplant week. (Links to follow).

Transplant week is always a special week for me, for very obvious reasons. It’s a chance to harp on about the miracle of organ donation and for me to tell my story to inspire people to have difficult conversations with their family and sign the Organ Donor Register to record their wishes.

It’s also a challenging week. It forces my life into a spotlight, not just in the media, but in my own head as well.

Talking about the difference between pre- to post-transplant me shows just how far I’ve come, but also challenges my perception of my life and what I’ve achieved. It challenges my understanding of the world I live in and it challenges the decisions I’ve made in the years since my transplant.

And here’s what it all comes down to:

I feel a pressure to “succeed” and make a difference that my donor would be proud of.

The funny thing is that I know this is silly. I know there’s no reason for me to feel this way, or for it to leave me feeling inadequate if I haven’t achieved what I feel is “success”. Yet it’s a feeling I can’t shake.

As one very good friend said to me during the week when I voiced this to her, “Your donor will just be happy they’ve allowed you to still be here, regardless of what you’re doing and how successful you are.”

The problem I face is that I don’t know that for sure. Yes, it makes sense. Yes, I can see the logic. But I’ve never met and will never be able to meet my donor, so I don’t know what they think.

That’s why I’ve been so busy this week. That’s why I remain so willing to talk so openly about my transplant journey. That’s why I’ll always take advantage of transplant week. Because it’s the one chance I get to demonstrate just how much this all means to me.

To that end, I’ll be sharing links to the various media hits I had this week here on the blog in the next few days. If you’ve heard them already, thanks for listening. If not, perhaps download them and have a listen in the car or when you’re out for a walk. The two radio interviews are the most in-depth I’ve ever done and in both of them I share some thoughts and stories I’ve never shared publicly before.

And, of course, if you haven’t already, please sign the Organ Donor Register.

How do we mourn the loss of a friend?

How do we explain the inexplicable?

Grief’s many forms come to us unexplained, uncontrolled and unblemished – pure, raw and all-encompassing.

My instinct is to write, to share my experience, perhaps in the vain hope that catharsis will come through the words on the screen.

But now as I sit and write, as I try to find the words, wait for them to flow, they refuse to come.

You died on Boxing Day. I’ve been friends with your family through your sister since before my transplant when she set up an organ donation campaign at Durham University and included me in it.

I’ve shared the peaks and troughs of life with all of you over the last seven years of friendship – through the highs of getting married to the lows of losing loved ones – and your death is one of the toughest.

I try to smile. I try to remember the wonderful times we shared, like our mini-tour of Hadrian’s Wall this summer. I try to remember the laughs, the fun, the frivolity.

But grief doesn’t always give us what we want.

Instead I’m left thinking of the hole you’re leaving in your family, a family who have had to endure too much. A family of such belief and faith and certainty that I don’t understand the trials they are being sent. A family of such closeness, such togetherness, that losing another member of it is too much for anyone to contemplate.

At the same time, though, it’s hard not to feel a sense of wonderful gratitude.

I’m grateful to have known you, sir. I’m grateful to have known your wit, your views, your humour, your idiosyncrasies, the broadest of smiles, the most contemplative of minds. I’m grateful to have had chance to discuss the good and bad bits of new Doctor Who episodes as they were broadcast, grateful to have understood your passions and your passionate dislikes and everything that made you the man I knew.

Most of all, I’m grateful to the wonderful donor and their family who, when all else was falling in around them, took the bravest decision of all to grant the gift of life to a then-14-year-old boy whose heart was failing. I’m grateful that your family had nine more years to enjoy their son and brother. I’m grateful that you lived to meet your baby brother, who also left us too soon. I’m grateful that you were given enough time for me to meet you, to get to know you and to consider you a friend.

There is no escaping the sadness that your death brings, the black cloud of disbelieving grief that just wants you to drop a sarcastic comment on my Facebook status update one more time. There is no escaping the fear, the knowledge of the inevitability of something similar happening to me, that comes with transplant-related deaths. There is no escaping the reality that we’ll never hear you laugh again.

But there is no escaping the gratitude we all feel to have had our lives blessed by your presence.

And that’s what I’m going to cling to.

Gareth, sir, look after Theo, keep an eye on us and lie peacefully in the knowledge that you made our lives all the better for knowing you. Thank you.

I’ve been away. Not away in an exciting, travelling-the-world kind of sense, just away.

It’s always hard to get back to blogging when you’re out of the habit. It’s not for shortage of ideas – in fact, part of the reason I want to get back into this SmileThroughIt lark is because I’m brimming with stories, thoughts and ideas I want to share – but it’s hard because you never quite know what to say when you’re returning.

The truth is two-fold:

Firstly, I’ve not blogged because working full-time is pretty exhausting. I hugely underestimated my own capacity for continuing with other projects (like a blog) while working full-time. I love what I do, but maintaining outside interests demands a commitment and organisational level that I haven’t managed to find yet. That and having ‘flu for a week (and needing at least another week to recover from the effects of the antibiotics and Tamiflu my docs put me on) doesn’t help.

Secondly, I became very self-conscious about what I write here.

Back in the early days of SmileThroughIt, it was easy to find things to write about, easy to pour out 500 words on my life at the time and easy to hold people’s attention with the will-he, won’t-he saga of near-death experiences.

Since my transplant, that’s all changed. I’m well, I’m living a ‘normal’ life and I sometimes wonder if anyone’s interested in what I have to write about.

But the release of Smile Through It: A Year on the Transplant List [US version here] has shown me that, actually, people are still interested. The attention and reviews it has received have been hugely flattering, but also confidence-boosting, just knowing that people do want to read my words and, more than that, they have enjoyed and got something from them.

The other reason I’ve had a break (I know, I said two, but hey, it’s my blog) is that, actually, breaks from any creative endeavour can be a good thing.

When we create something over and over and we find a pattern to our work, it can be very easy to find ourselves fitting that pattern just because it’s what we’ve always done. Sometimes it’s a productive, creative habit that helps us achieve what we want to achieve, but often it can be a counter-productive creative rut that allows us to keep rolling along without every really challenging ourselves.

I want to challenge myself creatively; I want to do many things, some of which I’m sure I will, some I probably won’t, but whatever I do or don’t do I want to know that I’m really pushing myself and testing my boundaries. If what I’m doing doesn’t scare me, I kind of feel like I shouldn’t be doing it.

Living the life you want isn’t always about the brave, bold, big choices you make. Sometimes it’s as small as changing a single habit in your life or eliminating something that weighs on you. This blog weighed on me for quite a while because I let my ego take over and worry about what people thought.

In truth, if I want to create the kind of thing I want to read (which, ultimately, is what this blog was all about in the first place), I need to care less about what other’s think and start writing for me again. If you like that, stick around (you can even subscribe and get it straight to your inbox). If not, then be well, be happy and keep smiling.

I don’t know if you’ve noticed, but there has been a major glut in ‘Why New Year’s Resolutions Suck’ posts since the turn of the year.

The strange thing is that even thought people spend a lot of time griping about how awful they are, they still seem to make them. And the biggest issue with any kind of resolution is the kick in the teeth you get when you fail.

This isn’t one of those posts, I promise.

But I did set myself some monthly goals to achieve this year, starting with January’s 3: eating right, daily exercise and daily writing. And success for these is largely subjective: whatever I deem good enough is good enough.

This week, though, I had my attempts to follow-through on my resolutions kicked squarely up the butt by a friend – and completely inadvertently on his part, too.

A bad start

Daily exercise is something I’ve always struggled with. As I’ve written about before, I throw myself into things that are beyond my capability and end up injured, demoralised or ill. Or all three. Which sucks.

The idea of my daily exercise goal wasn’t to hop on a get-fit-quick bandwagon and end up in my usual situation of running for two days then realising I can’t run then abandoning all hope of ever being able to run and then wallowing in a pit of junk-food-laden self-pity on the couch. It was designed to follow the little-and-often maxim and, hopefully, to develop positive habits for the rest of the year.

But I didn’t.

Getting in from work in the evening I’d be tired, it would be cold outside, I’d not really want to go anywhere other than the sofa and my bed.

And I wasn’t sleeping well, despite being tired.

Then, on Monday night, I read an update on Facebook that said:

I have exercised every day since New Year. Today I have clocked up 90 mins of brisk walking. Not much to some but for me that’s impressive seeing as this time last year I could barely stand up without excruciating pain. #grateful

Gratitude

That one word hashtag at the end (let’s leave aside how irritating and pointless hashtags on Facebook are for a moment, because I like this dude and, well, it seemed to work!) made all the difference to me.

I know GB (the dude in question) had a rough ride over the last few years, to which he alludes in the post. And I realised that my lack of inspiration and motivation to get out there and do anything at all to try to develop positive habits and achieve my goals wasn’t just lazy; it was ungrateful.

All of a sudden, from apparently nowhere, I was hit by a stark realisation: of all the things I’ve used to try to drive me, of all the motivational videos I’ve YouTube’d, all the incentives I’ve tried to give myself, none will ever be as strong as the feeling that I’m not being grateful enough for my life.

My donor has afforded me opportunities I genuinely never thought I’d have and although I say I’m grateful and thankful every day, my actions seem to belie those words.

It’s time for me to live what I believe, to match my deeds to my thoughts, to accept the hard things and to remember there’s always someone worse off than more. It’s time to smile through it…

Find your own gratitude

The point is we all have our own spur. We all have something that will connect with us, drive us, keep us going when it gets really tough.

It’s not always apparent what this is and, while we may think we’ve nailed it, a large part of the reason we fail at things like New Year’s resolutions is that we haven’t truly found our motivational force.

For me, it took the example and evidence of gratitude – and my own fears and desires not to be seen as ungrateful – to find the thing that gets me off the sofa and out into the cold, dark evening to walk the village as I have done since Monday.

For you, it may be the motivation of a big challenge, to raise money for charity or dedication to supporting someone else. Whatever it may be, don’t try to find it in anyone else: it will be yours and yours alone.

Have you found yours yet? Let us know what it is in the comments below or on Twitter.

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.