Yearly Archives: 2013

It’s fair to say that 2013 has not been a great year for us at Lewington Towers. There has been a pretty significant break in my blogging and, in many ways, our lives over the last 12 months.

I’m not going to go into great detail here (for reasons which will become apparent), but there has been altogether too much illness, downsides and death this year.

But, as I reflect on the previous 365 days I realise I have a huge amount to be grateful for despite everything that’s happened.

My wife and I survived what I hope may be one of the toughest years of our marriage just six months into it; certainly it’s been the toughest year of our relationship together to far, all 8 years of it. We’re stronger now than we ever have been before.

My newest niece was born. Not being a parent myself, I can only imagine the feeling to hold your own child in your arms, but beyond that there can be little else that can compare to the joy of holding your brother or sister’s baby in your arms and feeling such an overwhelming sense of love and protection for them.

In a very mundane way, we are still in our loving, warm home – we can pay our bills, we can afford some little luxuries and, if we were to compare ourselves with others around the world, we are extremely privileged.

We are surrounded by friends and family that love us, who support us and who would stop at nothing to protect us if they could.

Starting fresh

Both K and I sincerely hope that 2014 is going to be a better year for us, but regardless, I’ve realised how important this blog (and its ideas) are to me.

I stopped blogging for long periods in 2013 because I couldn’t see the light – I couldn’t find things to smile about, couldn’t see the positives in the mire of terrible events, couldn’t enjoy life for the gift it was.

So this year I’m resolutely turning over a new leaf. Inspired by Leo Babauta’s Year of Living Without I’ve decided to instigate A Year of Positive Change.

Positive Change

I wanted to focus on positive change because that’s the best way – for me at least – to stay motivated towards doing something good to change things in my life.

Too much of the things people vow to do around the turn of the year is about not doing things, about subtracting from your life the things that you enjoy in the name of some sense of “proper-ness” and a desire to be better.

My theory? We get better by becoming more than we are now, not less. Sure, there are things that giving up will make better. If you give up food, you’ll certainly grow thinner, but who wants to live a life without food?

This year will be about finding positive changes I can make in my life and, each month, choosing just one thing to work on to try to form a lasting habit that will take me forward into the many successful years to come.

Tomorrow I’ll launch my first monthly challenge and I’d love for you to join in. There is no reward or prize, nor any punishment for not achieving what we set out to do, but I hope that the sheer force of the positive energy and willpower will help to shape 12 months of positive change that will get me closer to the happiness I want to feel and the person I want to be.

And if I take anyone else along for the ride with me, so much the better.

Leave me a comment and let me know what one positive change you’d like to make in 2014. Positive means no “stopping”, no “less”, no “fewer”.

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 written before about trying mindfulness. I’m not always very good at it, but this Christmas I want to make more of an effort to get it right.

It’s been a busy and difficult year for us, 2013. Not one I’d care to remember to fondly or regularly.

Don’t get me wrong, lots of lovely things have happened, but lots of really quite horrible things have happened, too. After 2012, when I turned 30, celebrated 5 years post-transplant and got married, this year was always likely to be less exciting/brilliant, but I don’t think either of us expected it to be quite so rough.

The sum of the year is that I’ve not spent enough time with the people I love, for various reasons. Top of that list of people is my amazing wife, who has had to put up with far too much and, if I’m honest, with far too little support from me.

So this next two weeks, while I’m off work and without hundreds of things to think about, I’m going to concentrate on being mindful and present in everything I do with K.

Not only that, but I want to try to do the same with all of my family; to enjoy their company, to let annoyances flow over me and to keep focused on the gratitude I feel for everything they give me in my life &emdash; and I’m not (just) talking about Christmas presents.

Next week I’ll be sharing my plans for 2014 and how you can join in if you’d like. Until then, have a wonderful Christmas and remember to keep that gratitude in mind through everything you do.

PS – if you’re still stuck for Christmas presents, you could always give someone you love my book. (US link here)

I want to restart, reinvigorate, reignite and generally revamp this blog.

I want to make it look nicer and easier to read on your phone.

I want to create a plan for what I talk about and how I communicate my thoughts and ideas.

I have even been considering porting all of this over onto a different site.

I want to do all of this, and that’s my biggest mistake. I’m waiting for things to be perfect, for everything to fall into place before I commit to anything. That, dear readers is never going to happen.

Just get going

“You learn how to pursue great things when your footing is unsure, when the shores are unsteady and the road is far away, when the very next step you plant may indeed be more difficult than the last.” AJ Leon, The Pursuit of Everything

I’ve got to know AJ a little over recent months, through interactions on Twitter, through signing up for his conference next year and through reading his work. I highly recommend the latter to everyone.

Reading AJ’s post in my inbox today made me realise that, like walking on a beach, my footing was unsure. Rather than using that as an excuse not to move forward with anything, I need to use it as the reason to do it.

I’ve tried and failed at so many things over the last 6 years since my transplant and I’m often disappointed in how easily I give up. I don’t stop to praise myself for starting.

Without a beginning, no story can exist. If I want to live the life I want, to help people achieve more, to communicate ideas that resonate with people, simply to write, then I have to keep starting, keep chasing and keep going.

As soon as I stop, I over-think. When I over-think I paralyse myself. Paralysis is an artist’s worst enemy.

So this is me, pushing “Go”. This is me getting started (again). This is me saying things don’t have to be perfect and spot-on and just right before I get things out there. They just have to be.

What are you sitting on and waiting to be perfect?

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.

Last week I wandered down to London to be part of a Parliamentary reception for the CF Trust as part of their CF week celebrations/promotional push. I’m always happy to speak for the Trust because I believe 100% in what they’re doing and hope that, in some small way, my contribution helps to persuade others how valuable their work is.

The CF Trust published this lovely 5 minute video of the event on their website last week, so do take a look. The full text of my speech is below the video. I’d love it if you wanted to connect with me on Twitter or Google+ and let me know what you think.

Hello. I just have to say I love the layout of this event; because you’re all already standing it means I get an automatic standing ovation.

I’m here to give you a personal perspective on CF and transplantation. I was diagnosed with CF at 18 months of age and five and a half years ago, at 25, I received a life-saving double-lung transplant.

It’s far harder for me to convey the horrors of CF than if you were hearing from someone currently enduring them. I used to turn up to speeches dragging an oxygen cylinder and looking like death and tell people it’s rubbish and they would instantly agree. Now it takes a little more nuance.

So, I could stand here and tell you all about a life with CF. I could tell you about the endless rounds of physio, the mountains of medication, the time-sapping regimes of nebulisers and the moral-sapping stays in hospital every few months. I could talk to you about the fear that comes with waking up in the morning and not being able to take a proper breath in.

Or, I could talk about the difference transplant has made to my life – about being able to walk or run up a flight of stairs without stopping halfway for a five minute break to get my breath back. I could talk about how I’ve seen my the 30th birthday no one expected me to see or my wedding day almost a year ago to the day. Or I could talk to you about how it feels to be able to play football with my Godson, to chase my niece or to lift my nephew up for a cuddle.

These are all things I could tell you about, if I had the time.

Instead, let me put this to you: imagine, for a moment, you suffered from a disease where you knew that transplant was your last – and only – option. Imagine being forced to communicate with friends solely through the internet because you can’t be in the same room. Imagine the isolation and the fear and then imagine seeing your friends, slowly but surely, die from the very same thing that is destined to kill you.

That is the reality of a life on the transplant list; it’s a life on pause. That is the reality of day-to-day life with CF: no let-up, no respite, no days off. Just 24/7/365 fear, pain and often despair, mixed with hope, belief and often, a bit of a giggle – we’re known for our dark senses of humour.

Here’s the thing: this is something that we can do something about. If we can increase the number of potential donors in the UK, if we can increase the number of pairs of lungs made viable for transplant, if we better support the teams involved in performing the myriad complex duties of making a transplant happen, we can stop people with CF – my friends – from dying while they wait.

When I was listed for transplant, the stats said I had a 50/50 chance of actually receiving one. With a life-expectancy of less than two years, I lived for two and a half years filled with fear and hope. It’s fantastic to see that people with CF now face 70/30 odds, but they’re not much better than a coin toss.

The real reason I’m here today isn’t to talk about me and my life, but to talk about that 30%. That statistic that represents not just numbers on a list, but real people, real friends of mine and real family of many. That 30% represents people that we can – and we must – do better by. Because their lives are within our power – your power – to save. Thank you.

It’s been a while. Far too long, in fact. I almost quit this blog completely in favour of the other blog that I started a few weeks ago. But I realised that this blog means too much to walk away from.

My issue was that I didn’t know what this place was for any more; I didn’t know how to write about trying to be happy when I was, well, happy.

The whole purpose of this blog has been to focus the mind on the important things in life and to lean into discomfort in the knowledge that there’s always something to smile about. When I found myself without a battle to lean into, it suddenly seemed like an irrelevance.

Now I realise that it’s not that at all: this blog is a place where I can continue to make a difference by simply telling my story and relating it to the world.

Later this week I’ll return with a post about insignificance and why it matters – the main reason for coming back and the main reason for my new-found belief that my writing here matters.

I lead a blessed life, filled with love and abundance and when I compare it to the life I lived for so long before my transplant – in my late-teens and early-20’s – it’s a far distant as to seem like another lifetime entirely.

But it’s not – and that’s the key.

My life has changed immeasurably for the better over the past 6 years. Where I used to try to use this blog to inspire through battling the odds, it’s now a place I can hope to inspire by overcoming them.

Either way, I’m going to do it all with a smile on my face. Join me?

I’ve been down in London a lot over the last couple of months, at least one day a week to fulfill World Vision and my commitments to the Enough Food IF campaign (learn more).

Since travelling on packed-out, wedged-in tubes at peak time isn’t a terribly sensible idea for the heavily immuno-suppressed and since I’m not yet rich enough to have a private driver whisk me round the streets of our capital, I’ve taken to walking a lot more.

And, let me tell you, it’s been pretty enlightening.

Non-ambulatory

I’m embarrassed to confess I’ve never walked a lot. I grew up in Milton Keynes, the first English city to be laid out on a grid system and designed for the car rather than the pedestrian, so I was always used to driving or being driven everywhere.

Then, obviously, I was quite ill for a time which meant I didn’t do much of anything, including what little walking one can do around MK in the main shopping centre and the theatre district where all the nightlife is.

When I worked in London for 9-months last year, it was for a production company that focused on disability, run by disabled people, so I often acted as chauffeur to the producers and directors on each shoot, or simply driving the team to meetings.

But driving around London did teach me one thing (unless you count how annoying/frustrating/irritating and aggravating driving and drivers in London are): it’s not actually that big.

Certainly, it’s a metropolis of different lifestyles, cultures and rhythms, but it’s possible to get across large parts of it relatively quickly.

All of which inspired me to start looking at walking routes whenever I Google Mapped the addresses I was headed to.

And I started to walk.

Why I now choose walking

Once I started walking, it became kind of addictive. You see things from a different perspective. You have the choice to stop, to linger, to consider things you see, rather than keeping your eyes on the road or being whisked ever-onwards by public transport.

I started to notice not just the diversity, but the personality of the areas I was walking through – the little coffee shops and tea-houses, some of which were packed with locals who clearly know best.

I started to see the people of London as more than just an amorphous blob of “Londoners”.

And I started to give myself time to think.

It’s not often in the busy lives we lead that we can take time out for ourselves. Especially working in social media, I always feel a pressure to be checking what’s happening, seeing if there’s anything that needs replying to or finding new content to be sharing.

Walking around London, I started to enjoy the time I had just to walk, to think and to be myself, within myself, without chance to distract myself with something work-related.

I think we all have a habit of rushing: we rush to get to places, we rush to complete things, we rush to respond to emails, text-messages, Tweets or Facebook posts. Rarely do I take the time to sit, think and wonder.

Which is why I’m going to start walking more. Whether in London or at home in the evenings after work, I’m going to choose to step away and spend time in my own head, in my own company, digesting and processing my day.

I think we can all do with a little more “me time” and lacing up some comfortable shoes and taking ourselves out into the fresh air for a stroll is the perfect way to do it.

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.