Archives: oli lewington

Seventeen

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 growth of SmileThroughIt

For those of you who have followed from the start, you’ll no doubt have seen the extent of the changes that have come and gone on this blog since my transplant in 2007.

All of these changes, re-focuses and new iterations have been great, but they’ve always somehow fallen short. It’s only in the last few weeks that I’ve really been able to identify just what it is, and it comes down to two simple things:

  1. I had never clearly redefined the focus of the blog and what I wanted it to be.
  2. I had no idea who I was writing for.

Now, though, I’ve found both.

Continue reading

Old-fashioned, no-perks crowdfunding

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

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

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

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

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

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

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

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

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

Discovering Zen

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

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

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

I’ve always thought of zen as being more of the kind of eastern mumbo-jumbo that helps martial artists to focus and that many westerners scoff at, a bit like karma1. But zen is at once so much more than that, but so much simpler.

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

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

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

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

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

  1. I should point out that I actually vaguely believe in karma; certainly I believe that what goes around comes around. []

Refocusing Life

When I first started blogging, back in the dusty days of 2006, I began with a Statement of Intent. At the time, it was designed to remind me of the reasons I started the blog in the first place as well as letting people know what they could expect from me and it.

Over the years my blogs have changed faces many times, but this new facelift is something more. The simplified design and stripped-down visuals serve to remind me of the meandering thoughts and intentions that I let take over here and to keep me sharply, intensely focussed on what this blog is becoming.

You’ll notice the old name, SmileThroughIt1, is back because rack my brains as I may, I couldn’t think of a better way to sum up the purpose of this site or the ideas I live by.

What is SmileThroughIt? Put simply, it’s a philosophy of life that helped carry me through some of my toughest times. While waiting for my transplant, not knowing if it would come in time, I learned to focus on the good things in life. More than that, I learned that if I could find just one thing every day that made me smile, that day had been worth it.

This site is here to help me make the most of the second chance I’ve been given and if, through that, I can help, inspire or motivate other people, so much the better.

Before the lengthy break in updates, I’d started blogging to please others, to write what I thought people wanted, to ‘optimise’ my posts. But looking back over my archives, both on here and the original site’s archives, I saw that my best writing and the most effective posts came not from targeting an “audience”, but rather writing something for myself.

Although I hate to admit it, it’s not just my blog that has been through many twists and turns and a distinct loss of focus. Everything that’s happened in this blog has been mirrored in my day-to-day life and it bothers me that I feel like I’m letting this second chance slip past me without grasping every second.

This blog will reflect my change in mood, attitude and approach to my second chance at life and, hopefully, will help guide others through similar changes in their own life.

This story has no planned ending, no final goal, no means by which to measure its success or failure. This blog, like all of us, just is. And what it is comes from what’s inside and the people who read, contribute and support its aims, ideals and author (that’s me) along the steps of its journey.

Come along for the ride.

  1. and I’ve moved all of the archives onto this single site, instead of stripped across two blogs []

7 Reasons Transplant Week Is So Important: Day 2

Luck runs out.

In 2007, when I was struggling not just to enjoy but to hold on to life, I inherited what turned out to be a lucky portable oxygen concentrator from my good friend Emily, who had inherited it in turn from another friend.

Shortly after she received her1, Emily got her transplant2 and passed her on to me.

Six months after I adopted Claire, I was blessed with my second chance at life.

In deference to the lives she had touched and the continuing legacy of the lucky little concentrator, I in turn passed her on to my friend Sam.

The thing about luck is, it runs out. As I was celebrating my 26th birthday – a birthday very few, if any, of my family believed I would reach – Sam was slipping away and died shortly afterwards.

We can not – and should not – need to rely on luck to ensure people receive the transplants that will save and transform their lives. Luck should never come into it.

Please sign the organ donor register.

  1. the concentrator had been named Claire []
  2. double lungs, same as me []

7 Reasons Transplant Week Is So Important: Day 1

This is Jo. She was a very close friend of mine.

She was waiting for a double-lung transplant, just like me.

She died in November 2009.

She is missed.

Sign the Organ Donor Register.

An Old Favourite: Choose Your Battles

This week I have been engaged in numerous discussions of the organ donation system in the UK, mostly spurred by my appearance on Channel 4’s 4Thought.tv strand which asked, “Should Organ Donation Be Compulsory”.

Over the week, the show has featured a variety of views both for and against presumed consent and organ donation as a whole. One of these was Derek House, a Jehovah’s Witness who believes that all organ donation is fundamentally wrong.

While his views raised ire among the transplant community, it struck me that Mr House isn’t the man we need to be targeting. His religious beliefs preclude him from supporting organ donation: we’re not going to change that.

If we want to see the number of organ donors in this country increase, we need to tackle the vast disparity between the 75% of people who say they would be willing to donate their organs1 and the 26% who have signed the organ donor register. Those people don’t need convincing of the merits, they just need to be drawn out of their apathy.

Steve vs Roxanne

Focusing our energies on a battle we’re already winning seems like a better use of resources than fighting one we will inevitably lose.

The same goes for any kind of battle you may be facing as an artist or entrepreneur: look at the fights you face and work out which ones are worth your energy.

Picking your battles is not the same as taking the path of least resistance. It’s about using your focus and energies on strategies and tactics that will make a difference, not banging your head against a brick wall.

  1. the oft-quoted figure of 90% is, infact, the people who support the idea of organ donation; 15% of people support the idea, but say they wouldn’t donate their organs []

Make Your Mistakes Great

In yesterday’s post I talked about how mistakes are now open for public consumption thanks to the permanence of the internet.

What does that mean for innovation and leadership?

new mistakes

It means you have to fail bigger. Fail better. Fail publicly.

Too many people see the increased visibility of failure as a reason to go all out to avoid cock-ups.

Au contraire. The bigger, the more significant, the more noticed the fail, the quicker, the stronger, the more good-humoured the recovery, the deeper, the longer, the more profound the admiration will be.

Set an example. Tell the world it’s OK to fail before you get things right.