People with cystic fibrosis spend an extraordinary amount of time in hospital, either visiting briefly for a quick once-over in out-patients, or for longer in-patient stays for intensive courses of treatment.

And whatever anyone else says about the NHS, I can confidently say that my medical team are some of my best friends in the world.

There were periods of my life when I spent more time with my CF team than with my friends, when the people I confided in most were my nurses and physios, and when I felt like they were the only people who understood me.

Of course, it goes without saying that without the healthcare they provided, I’d be dead. So that’s also a plus.

When I was 18 I transferred to adult care from my paediatric team in Northampton to the adult unit in Oxford. They call it “transition”, which implies a smooth and calm process, but mine was here one day, there the next — sudden, brutal and very discombobulating.

I knew things would be fine from my first appointment, though: the physio had the same birthday as me (albeit a few years earlier than mine!) and she treated me like an actual person.

She asked how much physio I was doing (correct answer: two to three sessions a day) and when I said, bluntly, “None really,” expecting my head to get chewed off with a lecture about how important it was, she just nodded and made a note. That was it.

When I was going downhill rapidly, I remember sitting in my hospital room with my CF nurse and telling her, “I’m going to have to think about transplant soon, aren’t I?”

She put down my notes, pulled up a chair and we sat and talked about life, death, transplant, treatment options, end-of-life care and a whole load of other things for well over an hour without her once looking at the clock or answering her bleep. She knew what I needed then more than anything was to talk. Three weeks later I was referred for transplant, knowing it was the right move fro me.

“I am part of all that I have met.”

Alfred Lord Tennyson

I’ve grown into the person I am today because of the love, support and overwhelming kindness I’ve been shown by my medical teams since I was a child.

The team at Oxford, two of whom are still there almost 15 years on from when I first met them, have played a massive part in shaping my outlook on life and my health, and have managed it all without ever “telling” me what I should be doing.

My CF nurse once asked me four times in a row how I was one day, knowing each time I was putting a gloss on things because I honestly didn’t know what to say. When I finally relented and just said, “Sh*t,” she was able to help me talk through everything I was worried about.

These people are the true heroes of cystic fibrosis.

Living with CF we have no choice but to fight our battle each day. I don’t see that as brave, it’s just life. But these are people who have chosen to dedicate their lives to helping people like me stay alive.

They’ve seen more people pass through their doors and pass away than I care to imagine, and yet they still smile, they still encourage, they still push us to be the best we can be.

Here’s to the doctors, the nurses, the physios, the dietitians, the social workers, the psychologists and everyone else who helps make the NHS such a special place. There aren’t enough boxes of chocolate in the world to adequately say thank you for what you do, or what you have done for me.

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This post was first published on Medium as part of a five-part series for CF Week 2016.

Earlier this week, Ciara shared this video explaining cystic fibrosis in which she not only covers what CF is, but also the effects it has on people.

From the lungs (which most people know about), to the pancreas and stomach (which some people know about), all the way through to CF-related diabetes, osteoporosis (brittle bones) and more (which most people don’t know about).

She also touched on a really important point that affects most people with CF (in my experience at least):

CF is not just physical

It’s tough growing up knowing you’re likely to die much younger than your friends. It’s tough to be forced into making decisions based on health not desires when all your friends are off for a night out. And it’s tough not knowing if you’re ever going to be able to study or work full-time, or if you’ll always be too ill.

When you look at your friends in the prime of their lives, seemingly free to do and enjoy whatever they choose, whenever they choose, having CF starts to grate a bit. Your friends fly off to the far reaches of the world for the most remarkable gap years while you know that a developing country doesn’t offer the emergency healthcare you might need.

By far the hardest part of a life lived with CF, though, is watching the condition slowly whittle down your circle of friends. I’ve lost more friends that I care to count to the same condition that I know will one day kill me, and that’s a brutal reality to live with.

The challenges only multiply when you’re listed for transplant: you know you’re only on the list because the docs don’t expect you to live much longer, yet you’re so weak and so frequently ill that you can’t do all those bucket-list things you want to do before you do pop your under-used clogs.

Add to that the fact that you know waiting for a pair of lungs means you’re waiting for someone else to die and you’ve got a whole mess of different emotions and expectations to deal with.

Strength is all relative

Ciara put her finger right on the button in her video when she says this is all made harder by how often people tell you how strong you are.

“People are always telling me how inspired they are by my strength.” Ciara Hillyer

I’ve never begrudged inspiration — who am I to tell people what they should and shouldn’t be inspired by ?— but for a lot of people this perception of strength can enhance a greater weakness: a refusal to seek help. As if asking for help negates people’s admiration because you’re not doing it on your own.

I have a secret: that’s bullsh*t.

Brian Shaw is the world’s strongest man. Do you think he does it by sitting on his sofa all day? No, he trains. He worked hard to get to this point he’s working hard to stay there. And he doesn’t do it on his own, either. He has a team of trainers, advisors, supporters who are with him every step of the way.

It’s not weak to seek help, it’s a sign of ultimate self-knowledge and strength. When we can stand up and recognise our biggest challenges, we’re already winning the battle against them.

There is no simple solution

Even after transplant the issues don’t go away. Survivor’s Guilt is common, questioning why I’m still here when so many of my friends aren’t.

The first Christmas after my transplant we were all overwhelmed by joy, but I was also crushed by the devastation that one family was feeling somewhere in the world.

But the last nine years have taught me something vital in my fight against my mental health battles — a lesson I learned from an amazing friend of mine, also a transplant recipient, and no longer with us:

“This is my life and I choose to love it.” Emily Thackray

I’m here, I’m alive, I’m breathing. I’m working, I’m playing, I’m learning. I’m married to an incredible woman and I’m surrounded by incredible family and friends. Why I’m still here doesn’t matter.

Maybe I was chosen, maybe I’m just lucky. Maybe there’s a reason for this, maybe there’s no reason to anything. Who are any of us to judge our places in the world?

My choice is to live my life in the best way I know how and to hope that someone, somewhere is looking down on me and thinking, “I’m glad it was him.”

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This post was first published on Medium as part of a five-part series for CF Week 2016.

Take a moment to imagine your best friend. The person who truly understands you, who you can be totally yourself with. Take a moment to summon up all the memories you share together, good and bad, highs and lows, peaks and troughs.

Take a moment to imagine you’ve been diagnosed with a health problem. Doesn’t have to be life-threatening, don’t bum yourself out. What would you do? Go online, probably. Google around. Chances are you’ll find a support group somewhere nearby and turn up nervously next Wednesday to find some bad coffee, cheap donuts and common ground with other people going through the same thing as you.

Take a moment to imagine your favourite hobby or pastime. Maybe it’s singing, dancing, performing with other people. Maybe it’s building and racing cars, karts or model planes. Maybe it’s knitting, crafting or baking, especially with friends while you create your new masterpieces. Whatever it is, chances are you like spending time doing it with other people who like spending time doing it.

What if you couldn’t hang out with your best friend? What if a support group was the worst possible thing for you to go to? What if like-minded people were actually dangerous to your health?

That’s the reality for people with cystic fibrosis (CF).

Two people with cystic fibrosis can never meet

Back when I was a kid, I went on two amazing holidays with other people with CF. One was a CF camp in the countryside just outside London, the other a once-in-a-lifetime holiday trip courtesy of a charity called Dreamflight. Both were places where I was encouraged to mix with and seek support from other people with CF.

In the mid-nineties, doctors began exploring a hypothesis that harmful bugs — bugs that may have no effect on “normal” people — could be passed quickly and easily between people with CF, with frequently life-threatening consequences.

It took a while for anyone of my generation to accept something that had been fine last week was suddenly off the table, but scientific evidence began to back up the claims and it’s now clear that cross-infection is one of the biggest risks to people with CF today.

Of course, not all people with CF are alike. There are some people I just don’t like, and a shared life-shortening medical condition won’t do anything to change that. But I’ve gained a huge amount from my friends with CF and it hurts to only be able to conduct those relationships remotely.

Sure, things are far better now than they were in the nineties when I was really struggling. Text messaging (at first) and social media (later) have enabled much quicker and easier communication with friends, and much easier ways of asking questions when you’re not sure if what you’re feeling is “normal” or whether to go and see your doctor.

That doesn’t take away the fact that when you lose a friend to CF, you can’t gather with your surviving friends in a pub to say goodbye. You can’t huddle together at the funeral for fear of putting each other in the same place as the person you’ve come to honour. You can’t give or get a hug when you need it most from the people who understand you most.

Last year when we were thinking up new ideas and propositions for the Cystic Fibrosis Trust, we came up with the concept of “Fighting for a Life Unlimited”. Ultimately, we want to find the cure that means no one with CF ever has to watch their friends die and that parents of people with CF stop outliving their children. We know that along the road to that day there will be many “small wins” that will move us closer to that ultimate goal, each one lifting a limit that CF places on people’s lives.

The limit that means the most to me, that I can’t wait to see, is the day people with CF can meet anyone else with CF without having to take extreme cross-infection precautions. Because not being able to hang out with people really, really sucks.

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This post was first published on Medium as part of a five-part series for CF Week 2016

This week is CF Week 2016 — the UK-based awareness week that coincides with the global CF Awareness month.

I intended to re-start the Smile Through It videos again this week, filming and uploading a daily vlog to cover five things you may not know about cystic fibrosis (CF). Yesterday, I realised just how unrealistic that was, given that recently I’ve been battling through some real energy crashes in the evenings, which is when I would need to focus my creative energies on producing the vlog.

This leads me to thing number one that you might not know about cystic fibrosis:

Transplant ≠ Cure

Almost nine years ago I had a double-lung transplant. I was at best a few months away from death, most likely a few weeks, and everyone was expecting the worst while silently hoping and praying for the best.

My life has changed completely from the life spent living moment to moment, day to day, hoping I had enough energy to do more than lie in bed all day chained to an oxygen cylinder, but rarely having my wish come true.

Now I live a “normal” life. I’m married, I’ve just bought a house, I have an amazing job as a senior leader in the organisation that played a huge part in my being alive today, and I’m able to plan for a future many of us never thought I’d see.

But it doesn’t mean all my troubles and challenges have gone away. And it certainly doesn’t mean I’m cured.

I still take bucketfuls of tablets everyday (in excess of 60 each day, which is almost 2,000 per month), I still have to take inhaled nebulisers to keep my new lungs free of infection and I still have a whole host of CF-related complications. I’m diabetic (thanks to the steroids I take as part of my anti-rejection therapy), my bones are more brittle than they should be and I still can’t digest food properly and so have to take enzymes with every meal.

The biggest struggle, though, is having to manage my energy levels. I always knew transplant wasn’t a cure, but I did think it would make me “normal” — that I’d be able to do everything everyone else can do.

Over the last nine years (very, very slowly), I’ve learned two very important lessons.

There’s no such things as normal

I perceived “normal” as being able to do whatever I wanted to do.

My ideal day would start at 5am (I love early mornings) when I could tackle personal projects, read, meditate, get a kick-start on the day, and would end around midnight after a nicely chilled out evening of quality time with my wife. I’d only need a few hours of sleep to rest and recharge, like all the “great” people of the world.

What I discovered was that this isn’t “normal”. And, in fact, there is no “normal”.

Not everyone can operate on 4 hours sleep a night (especially me) and not everyone can do the things I do either. “Normal” is whatever you want it to be, but to embrace it you also have to embrace your limits.

There may not be as many hours in my day as I’d like (needing 8 of them to sleep is such a drag), but I can still fit the things I want to do into most of them. It’s just about prioritising.

The Superman complex gets you nowhere

The second thing I learned is how much damage you can do yourself by thinking it’s possible to operate like anyone else.

Physically I made myself exhausted trying to get up early, go to sleep late and do more in a day. I ended up doing less because I was so tired my brain didn’t work when I most needed it to.

Mentally it was even worse, because until you realise that you’re suffering from what my doctor calls “Superman syndrome” all you can see is that you’re not able to do the things you want to do in the way you want to do them. You’re fixated on an ideal that’s impossible to reach.

My transplant hasn’t cured me of cystic fibrosis, but it has allowed me to do more than I could ever imagine. And it’s allowed me to learn more about myself than I ever thought possible.

Spare a thought today for all those people out there living their life moment-to-moment not because they’ve chosen it as their way of life, but because they have no choice.

Spare a thought for those people waiting at home for that phone to ring to tell them they might have a second chance for life.

Spare a thought for those people whose second chance will never come.

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This post was first published on Medium as part of a five-part series for CF Week 2016.

I had “one of those days” yesterday. The kind that starts off not very well, gets progressively worse and ends without much of a glimmer of light anywhere.

Two things occurred to me as I took the long, slow drive home from London. The first was how much many people would kill for a bad day like mine.

Back before my transplant, I was fighting for every breath, living one day to the next in the hope that a) I wouldn’t die and b) today might might be a tiny bit better than the day before.

Yesterday I’d spent the night in a supremely uncomfortable Holiday Inn, hardly slept, woken up with a neck ache, then spent two-and-a-half hours driving about 13 miles into central London, eventually turning up so late for a meeting they’d already finished. And the day went downhill from there.

I realised on my long, slow drive home in the evening that before my transplant I wouldn’t even have been able to spend Wednesday night out at a recording of a TV show, let alone have enough energy left over to do a full day of work.

I’m incredibly blessed to be in the position I’m in, to have the support I have and to have been given the gift of life. I know plenty of people who would kill for a bad day like I had yesterday, versus a bad day that means they end up in hospital genuinely worried about what comes next.

The other thing I realised as a cruised up the M1, mildly faster than a snail at full pelt, was that I had a whole new day starting tomorrow. I hated myself for thinking in such horrendous clichés, but tomorrow would be a fresh start, a new day, a fresh shot at making it as awesome as Wednesday had been.

It’s important to remember these things. We all too easily forget the things we have going for us, and the opportunities we’re presented with every single day.

Don’t forget. Take another shot at awesome.

Monday is a good day to start, right? Or the first of the month? Or perhaps a significant day — a birthday, an anniversary, the first of January.

The truth is, if you want to get something done, if you want to take that first step of many along your road to succeeding in whatever you’re trying to do, start today. Don’t wait.

Too many times we promise ourselves we’ll get started once the time is right, but the time will never be ‘right’. There will always be an excuse not to wake up earlier, not to eat healthier, not to go to the gym today (“But I will tomorrow, I promise!”), not to create something.

Start today and banish those excuses.

This is a start.

In the words of Seth Godin, “This might not work”, but I’m going to be trying to create something (most commonly a piece of writing here on Medium) every day, at least for the next month. I have history with this sort of thing and I’ve not been terribly successful at it, but if I fail, who cares? What if I succeed this time?

I defy you to read this post and not be inspired to want to create something everyday for an audience of you. The idea that I can do this for a year seems crazy at this point, but unless I start, unless I hit “Publish” on this post today, and another one tomorrow, and one the next day, I’ll never know what may come of it.

What are you going to start today?

Today marks 8 years since my life was transformed by a person I will never meet and never be able to properly thank.

Christmas seemed a long way away in November 2007, when cystic fibrosis had ravaged my lungs to the point that they were all but useless and everyday tasks had become physical feats of the highest magnitude.

Everything changed when we received the call to say that a family somewhere in the UK going through their darkest of times, had consented to their loved one’s wish to become an organ donor.

Over the last eight years I’ve faced tougher battles than I ever thought possible. I’ve had to learn how to breathe again, how to function again. I’ve had to learn how to be “normal” and how to live and plan like someone who isn’t constantly looking over their shoulder. I’ve had to work out what this all means and — at times — that’s taken me to the brink of despair.

And in amongst all that I’ve found a spiritual second home in Hawaii, experienced the overwhelming love of a church-full of people witnessing my marriage, seen two nieces come into the world I would never have met and been able to run around and chase after all of my other nieces and nephews, and watch them grow — some of them all the way into adulthood.

Reflecting on this yesterday in an effort to boil it down into something expressible, I realised everything I’ve learned comes down to three simple things:

1. You will never know how many lives you touch

Consenting to organ donation can save up to seven lives. I have no idea how many lives my donor saved beyond mine, but I can tell you this for sure: they have touched many hundreds more.

My parents lived the first 25 years of my life in the belief that they would outlive me. My brother always thought he would soon be an only child. My wife wondered whether our youngest niece and nephew would even be able to remember who I was.

That’s just four lives before you even start to count the 200 closest family and friends who came to our wedding.

I’m a living legacy for the gift my donor gave, but the ripple effect of that one life still goes on and on with every new person who reads my posts, watches me speak or shakes my hand at an event.

I have no concept of the number of people I’ve manage to reach with my story, but 90% of them would never have heard of me had my transplant never happened.

“I am part of all that I have met.” Alfred Lord Tennyson

My donor is not only a part of me — and me a part of him — but we are both parts of people we have met only for the briefest of periods.

The same is true for you: you touch new lives in new ways every day. Never forget the ripples you send out with every step you take.

2. You are enough

‘Survivor’s guilt’ is a common phrase in transplant circles. Why is it that I should still be here when someone else isn’t?

During the two-and-a-half years I was waiting on the transplant list, growing weaker and weaker, my faith and belief ebbing away with every new infection, I prayed for a transplant every single day.

And every day as I prayed I thought to myself, “I’m praying for someone else to die.”

I recognise now that’s not the case. My donor would have died anyway, regardless of what I did. And if I hadn’t been waiting for a transplant, his organs might have gone to someone else or, worse still, gone unused.

Nothing I did changed either of our fates. But that doesn’t stop be being indebted to my donor and my donor’s family forever.

The problem comes when you realised that it’s a debt that cannot ever be repaid.

And so follows the pressure. The absolute belief that you have to matter. To be someone of substance, of consequence. To live a life of meaning.

All I’ve ever wanted to do is to make my donor proud. To know that somewhere there is someone looking down on me and thinking, “I’m glad it was him.”

But what is ‘a meaningful life’? How can I ever know that I’ve done enough, that I am enough, to justify the gift I’ve been given?

The reality is that none of us can define it, but I’ve finally learned I am enough.

It’s enough to still be here and be living my life every day. It’s enough to be the best husband I can be and support my wife in every way she needs me or wants me to. It’s enough to work for the organisation who saved my life and gave me a chance of seeing a transplant in the first place. It’s enough to be the best uncle I can be, the best son, the best manager, the best employee, the best colleague, the best friend.

I’m not the world’s best at any of those things, but I strive every day to be the very best version of me that I can be. And that’s enough.

Perfection is impossible. All you ever need to be is enough, and you already are.

3. The world is full of joy

Over the course of the last eight years I have — quite genuinely — lost track of the number of friends I’ve lost.

Sam, Jess, Theo, Gareth, Kerry, Jo, Toria, Emily, Anders, Pete, Rob are just the names I could think of off the top of my head without pausing my typing to think it through properly — and it doesn’t even include family members like my deeply-beloved Gramps or my wife’s aunt. I’ve been to more funerals than my parents.

All we see if we look at the news is sadness and sorrow, horror and fear. The world is full of sadness and I’ve experienced more than my fair share over the last eight years and even before that.

But what I’ve come to realise is this: while the world is full of sadness, it contains far, far more joy.

Every single one of the people I’ve lost have given me far more joy than their deaths gave me grief. I’m filled with immeasurable gratitude for knowing each and every one of them. I’m a better man for having known them all.

And joy abounds everywhere. When I was working at World Vision UK, the most remarkable thing that struck me was no matter where we would get stories back from — from Syrian refugee camps to villages devastated by Typhoon Haiyan in the Philippines — there were always be pictures of people laughing.

Most often, it was children. Children are our future and our hope. Their innocence and their willingness to give over completely to feeling joy in all its boundless, manic energy is astonishing. And it’s something we must always cling to.

Before my transplant I worked with young people at Milton Keynes Theatre, assisting in workshops for children as young as four and five. I used to tell people then the reason I loved working with kids.

“The most important thing in a 5-year-old’s life,” I would repeat to anyone who would listen, “Is whatever they are concentrating on right now, this very moment.”

There is no greater joy than the laughter of a child, and no greater goal for any of us to strive for than to remember that sense of wonder, of awe, of complete enjoyment in every single moment of the day.

And we must all take pause when all seems bleak to look around us and see the joy and the happiness that exists in the world, because it’s always there.

These things I’ve learned over eight years of a life that I have no right to be living. But I am living it. And as long as I am I will continue to do whatever I can to be the very best version of me in this very moment.

And for my donor, I now know that’s enough.

Despite being shattered from a busy week and a late night with the family last night, K and I were both ridiculously happy to spend lunchtime with our little gang of friends again – it kind of felt like old times, meeting up and hanging out together as a group twice in the space of just over a week.

It’s lovely to know that however long it is until we do it next (which hopefully won’t be as long as the gap up to these two weeks), we’ll still pick up exactly where we left off.

And Steve’s baby will probably still stare at me oddly and occasionally smile.

Thanks for having a birthday, Dave.

Tonight we had a final family meal before waving my bro and his wife and daughter off for their work-related emigration to Europe. It’s sad to see them go, but I’m excited at the exciting new challenges that face them, not to mention how much our niece will benefit from growing up in a different culture and country for the first few years of her life.

I’d love the chance to do something similar, but I know I’m probably a bit too much of a wimp for that. Still, having a nice gathering centred around great food (as all Lewington family gatherings always are!) was a great way to say goodbye and wish them well. Bro and Dad are now traipsing across Europe to get their car over there and then flying back later in the week to pick up the rest of the gang and take them out there. In summer, K and I get to drive out and deliver the new car they have on order, so I’m already grinning ear-to-ear just thinking about it. Summer holiday planned already!