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

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

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

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

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

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

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

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

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

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

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

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

“To fly we have to have resistance.”

Maya Lin

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

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

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

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

I hope you disagree.

Dmitri Shostakovich composed extraordinarily quickly. Once he heard the piece in his head, he would pour the notes onto the page. He could manage 20-30 pages of score a day and rarely made corrections.

I can’t write that fast. I can’t write music at all, but let’s leave that to one side. Words vs. music may be an indirect comparison, but even with the benefit of technology I can’t come close to that speed (or endurance).

Shostakovich, however, constantly worried that he worked too fast. He wrote a letter to a friend saying, “Undoubtedly this is bad… composing is a serious business.”, an idea that is so clearly ridiculous that it left me hoping his friend wrote back to tell him as much.

We must never get caught up in the idea there there is one right way to do something – a proper way or, even worse, the “done” way.

My wife and I make tea totally differently, but they usually taste the same. 

Lee Child’s writing process is totally different to Haruki Murakami, but they have both written bestsellers.

Clint Eastwood, when he directs a movie, shoots as few takes as possible, while David Fincher is renowned for shooting 20, 50, even 100 takes of a single shot before moving on. They’ve both made masterpieces. 

The way we succeed is not by doing things the way someone else does them, but by finding the way that suits us and owning it.

After all, for all his worrying, Shostakovich was a pretty solid composer all things considered.

When we finally overcome our nervousness about getting started we feel great. The first push of the boulder is always the hardest, momentum will help from here.

The reality, though, is that the hill is often not as steep as we thought it was and the momentum may be halted by tree branches, smaller rocks or even people rather than rumbling its way to the bottom untouched.

When that boulder stops no one can ever say for certain whether it’s gone as far as it can. It may be leaning up against an insurmountable obstacle or an unrelenting opposition, or it might be a finger-push away from barrelling down to its destination. But that’s not the point.

The point is that we have the chance to start again. We have a choice.

We can start pushing the same boulder and see if it’ll budge, we can start pushing a smaller rock on the same hill to see if we can get that one going instead, or we can choose an entirely different hill on which to find an entirely different boulder we think we can shift.

Of course, we also have the option to do nothing, to tell ourselves we can’t do it, that we’re done with pushing boulders.

We must never, ever take that option.

Regardless which boulder we decide to put our shoulder to, we must keep pushing. We must try to see how far we can go with this one, and the next one, and the one after that.

It doesn’t matter how many rocks on how many hills we try to shift, we must not stop starting.

Starting is hard. Things get in the way, we doubt ourselves, we worry that if we start we may not finish, we may not succeed, we may not make it to wherever we’re going.

People will often share the old Lao-Tzu quote, the “a thousand-mile journey begins with a single step”, but they often miss an equally great truism from the same chapter:1

“Rest is easy to hold.”

Lao-Tzu, Tao Te Ching

And so we hold our rest because if we start we may fail.

“But wait,” people say, “Failure is a good thing.” They tell us that Edison said “I know 10,000 things that will not work” 2 and while it’s lovely to know other people have done it before us, it doesn’t make failure easier to take.

Eventually, when we finally take that fabled first step, we remember: the reason people start is because starting feels good. It’s scary, fun, intimidating, energising, exhilarating, uncertain and, most of all, it’s a beginning. We can say, “I have started.” Our journey has begun, however long it may take and wherever the road may lead.

We can never feel the same regret for the things we start as we do for the things we never begin, so if you’re thinking about starting something, start.

Because you can. I believe in you.

1. Chapter 64, Tao Te Ching, quote taken from the Stephen Addiss and Stanley Lombardo translation [non-affiliate]. [↩]
2. He didn’t, by the way – the quote attributed to him by biographer Walter S. Mallory in a 1910 biography was “Results? Why man, I have gotten a lot of results! I know several thousand things that won’t work.” Source: Quote Investigator [↩]

We all know the people.

The people who work 18 hours a day, sleep for four and spend the other two in the gym. The people who post screenshots of their 4am alarm clocks, their “getting my pump on” Insta stories or their late-night “I’m still at it” Tweets.

When we see them, we often forget a simple truth: they are not us.

We mustn’t get sucked in to living someone else’s life. Other people’s productivity is their own. Their habits, their lifestyles, their beliefs aren’t who we are. We can aspire to be as successful as someone else, but we should never aspire to be someone else.

My body won’t let me operate on less than seven or eight hours of sleep, so I’m never going to work 18-hour days. My brain won’t let me go through a day without spending time with my wife, chilling out, eating together, watching TV, so I’m never going to spend all my waking hours at work.

That doesn’t mean I can’t be successful. It just means I’ll do it differently to someone else. Which is the point.

The moment we start to build our lives according to the way other people build theirs, we lose touch with who we are and how we achieve what we want to achieve.

You do you, not them.

If you can live with Triumph and Disaster
And treat those two imposters just the same:
…
Yours is the earth and everything that’s in it

Rudyard Kipling, If

Sitting on my dad’s chair in his study in my childhood home, I would read the framed copy of this poem that hangs on the wall at least once a month. I’ve lived by Kipling’s words for as long as I can remember.

When things go well, I celebrate. When things so badly, I do my best to do exactly the same things. I stop work early, I treat myself to time playing games or watching a movie, I enjoy a drink of my favourite whisky.

Today, on hearing that I hadn’t been shortlisted for a job that I had publicly declared an interest in, I realised that I needed to go further.

Because I’d tweeted about it and written a Linkedin article about it, and because if I’d been successful I would have Tweeted about it and posted about it on Linkedin, I owed it to myself to do the same now I’ve been unsuccessful.

I can’t say to myself that I treat triumph and disaster just the same if I stop myself short because this bit of it is embarrassing. Of course it’s embarrassing. Of course I don’t want to share it. But holding ourselves to our values is not about what we want, it’s about what we do.

So I failed. And I failed publicly. And it’s embarrassing. But I have lived up to the standards I set for myself. I can hold my head high because I honoured myself. That is more important to me than any victory I might win or any defeat I might suffer.

When we refuse to let failure beat us down, we discover it can lift us up.

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

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

Which is why I had to share it.

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

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

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

Sometimes things just pop into my head. Unprompted, unwanted and not always helpful. But sometimes things pop into my head unprompted, unwanted and very, very helpful. Like yesterday when I started thinking about learning vs. teaching.

I mentioned in yesterday’s post that I wanted to move this site and these posts further towards the original intention of this blog. While mulling it over after I posted it I realised what wasn’t working.

Every time I’ve tried to restart this blog I’ve focused on what I can teach. What lessons from my life I can shape to apply universally. How I can benefit other people (like you, Dear Reader) with my knowledge.

And that’s bullshit.

If I sit here every morning1 and try to think about what I can teach today, I’m going to tie myself up in knots. But – more importantly – I’m going to create inauthentic, disingenuous posts.

The reason my blog resonated with people when I first started writing was because I was focused on learning. I was trying to make sense of my world as it was. Horrible, scary, intimidating but also funny, bright and full of excitement.

That’s precisely what I need now. Not a place where I can come to preach my wonderful wisdom, but a place I can put down what I’m learning every day.

If that’s something you can also learn from, fantastic. Have at it. Take away what you want to take away. But this place is for me. For my lessons. For my knowledge. For my experience. This place is where everything starts to make sense. I hope.

1. or afternoon, or evening, whenever I managed to plonk myself down [↩]

There are some spoilers at the end of this piece. There’s a warning before them in the text.

Warning: I also allow the filmmakers some artistic licence, which may be unpopular, but sue me, I’m a filmmaker.

Five Feet Apart is a fantastic film.

Five Feet Apart is a terrible film.

You’ll love Five Feet Apart.

You’ll hate Five Feet Apart.

But what Five Feet Apart provides is the most accurate on-screen portrayal of cystic fibrosis (CF) that I’ve ever seen. Of course there are little things (and one major thing) that don’t quite ring true, but those are few and far between and some may even be explained away by US/UK experiences. What matters to me is the feel of live with CF and the picture it paints.

It’s important to note, however, that no one can represent the views of experiences of everyone with CF — I am always at pains to say I am not ‘people with CF’, I am a person with the condition. It’s also worth noting in this piece I also don’t represent the views of the Cystic Fibrosis Trust (my employer).

Let’s be clear, at its heart, this movie is a soppy teen romance where two teens fall in love amid seemingly insurmountable obstacles. No spoilers here (I’m confident it’s pretty clear in the trailer!), but if don’t like those kinds of films, you won’t like this one.

Nor will people affected by CF like this if you want it to be a film about CF; it’s not. It’s a film about two teens falling in love amid seemingly insurmountable obstacles. And the biggest obstacle is their different personalities… and the life-shortening condition they live with.

There is a lot this movie can teach you about living with CF, and we’ll come to that later, but what it won’t teach you is anything about and what we have to tackle first is —

Cross-infection

Cross-infection is a major and very real thing. Research has shown that potentially lethal bugs can pass between people with CF and travel remarkable distances. In the UK, the guidelines suggest that no two people should ever be in the same room together for fear of causing each other irreparable damage,

In the film, the characters (mostly) abide by the ‘six feet apart’ rule that’s common — although not ubiquitous — in American CF centres. This would never be allowed in the UK.

That inaccuracy, then, is the biggest hurdle for people to get over when watching the film. For people with CF, we have to let it go, which you really should have done if you’re going to the cinema in the first place! For people without a connection to or knowledge of CF, just be aware it’s much more complicated than the conceit of the film makes it.

Regardless, it’s still a good introduction to some of the more difficult elements of a life with CF and the tortuous nature of the condition that has to be faced, dealt with and accepted.

The way the characters walk the halls with masks on to protect themselves and others from bugs, but take them off to speak to each other is also a little jarring; that’s not the point of the masks, but you have to allow some artistic licence because when we watch a film we learn so much from someone’s face. Having a film where the actors are all hidden away behind masks doesn’t make for compelling drama.

And it’s this level of artistic licence that I think will guide most reactions from people with CF, because you either accept that you have to do some things for the sake of the drama and allow yourself to get swept up in it, or you don’t and and every element that’s not quite right will drive you potty. That’s something most people won’t be able to choose, it will just be an immediate reaction they can’t control.

While we’re on the subject of minor niggles, the way they show the coughing up of sputum is a bit too vomit-like to me.

The biggest challenge — especially for a British audience — is knowing how much inaccuracy is the filmmakers being wrong and how much is the American norm. Things that jump out to us may just be differences in our systems.

With all that out of the way, here’s what you’ll learn from watching Five Feet Apart.

The Cystic Fibrosis Team

Inthe film, Barb plays a critical role that’s a bit of an amalgamation of the multi-disciplinary teams we have here in the UK. She a ward nurse and a nurse specialist, and a little bit of a physio/junior doctor, too.

Regardless, the characters with CF have a special relationship with her that is wholly accurate. All of the specialist CF nurses I’ve had have been incredible people. Deeply caring and understanding, but ready with a swift kick to the rear when you need it.

I’ve known one of the nurse specialists at my hospital in Oxford, Lisa, for more than 18 years now. No visit is the same without seeing her, even if it’s just to say hello. She’s seen me through the best of times and the worst of times and she was the one I first discussed my declining health and road to transplant with — not an easy conversation for anyone.

On the hospital ward in the old Churchill Hospital in Oxford way back in early 2005, I’d just endured a horrible winter of infections, hospitalisations and intravenous antibiotics (where the drugs are pumped into your body through a line in your veins). I’d also been looking at my notes and lung function results and noticed that my peaks and troughs weren’t as far apart as they used to be. Even worse, the intensive treatment for the troughs wasn’t bringing my lung function back up to the level of the previous peaks. I was losing lung function that I wasn’t able to recover.

Lisa came in, as she did every morning I was incarcerated on the ward, for a bit of idle chit chat before her day started ‘properly’1 . I vividly remember saying, “We need to talk about transplant, don’t we?”

That was the start of a near 3-year journey to my new lungs, where she (and the rest of the team) stood solidly beside me, even as I was being introduced to a new team at a new hospital, always making sure I was keeping as well as I could while we waiting for that fateful call.

The second half of Barb in the film (Barb II we’ll call her) for me was and remains my physio, Ali. I’m not sure anyone can understand how important the relationship between a person with CF and their physio is. I know because I’ve had awful physios, good physios, great phyios, and I’ve had Ali. The worst physios come into your room, push you to do your physio and chastise you if you haven’t. The best physios make any session feel like a visit from a friend.

We didn’t have afflovests in my day, and indeed they’re still not usually provided by the NHS in the UK, which meant we had to make do with some form of breathing exercise coupled with ‘physical manipulation’ — either percussion or chest squeezing when you cough and those sorts of things.

This means that when hospitalised you might have two or three 30–60 minute sessions with a physio everyday. That’s a long time to spend with someone. When I was in hospital I would spend more time with Ali than I would with my family.

I was really, really lucky to make such a great friend in Ali because it made physio sessions at least bearable, and sometimes even fun.

The depiction of the relationships between the main characters and Barb felt spot-on to me. Part police officer, part friend, part medical professional, the central importance of that relationship was shown brilliantly and demonstrated a real understanding for what life in the confines of a hospital can be like.

Isolation

When I was a kid, back in the late 80s and early 90s there was no such notion as cross-infection. Everyone thought it best for people with cystic fibrosis to hang out with each other so that we could share our personal experiences and learn that others faced the daily regime of treatments we did, too.

Only in the mid-90’s did we start to discover it wasn’t a good idea. Then we saw it was a bad idea. Then we saw it was a very bad idea. Then we saw that it was potentially fatal. That’s why cross-infection rules are so strict.

That means for people like me we had to work hard to adapt. Rather than hanging out with our mates in hospital, sitting on beds together, sharing war stories and bitching about the junior doctors who didn’t know how to take blood properly, we were now confined to single rooms, closed off from the rest of the ward and unable to even see the other people with CF on the ward. In the beginning, the best we could muster up was sending messages with the ward nurses or physios.

The Internet has been something of a (limited) saviour for people with CF because it suddenly opened up more and more opportunities to connect with each other. We began chatting again, finding new friends online, most commonly in ‘chat rooms’2 and web forums, the quaint forms of interaction that seem almost archaic today.

Then social media came along, making it even easier, followed by FaceTime, Skype, WhatsApp etc etc, allowing us to be more connected than we have been in more than 20 years.

But don’t let that fool you.

Speaking from experience from both sides of the coin, nothing but nothing beats being able to sit on a bed, seeing your friend in perfect HD, 3D, human resolution, being able to properly look them in the eye, hug them, whisper about your favourite nurses with them and having friendships just like all the ’normals’ out there in the world.

It’s not just the isolation and separation from your friends with CF that the condition can rob you of, though. Separation from your other circles of friends and family is real, too.

Being in a hospital more than an hour-and-a-half away from my home town means that my friends couldn’t just pop in to see me if they got out of work early or had some time before starting. It made it a mission that’s hard to expect anyone to make. That said, plenty did, and they also did incredible things for me, like joining my then-girlfriend, now-wife one weekend to totally overhaul the second bedroom in our little flat into a study where I could work and earn money as a freelancer from. I didn’t know anything about it until I got home from hospital.

More than just hospital visits, my CF stopped me doing things I would have leapt at doing otherwise. Shortly before I was listed for transplant, a bunch of my best friends went off to Australia for six months, which I was excited to do with them. Thanks to an unplanned, three-month spell in Texas due to a lung that wouldn’t properly inflate (ask me about it another time), I was too unwell to join them. Every email we got from them (this was in the days before WhatsApp and universal WiFi, kids) made me more and more happy for them and sad for me. I ended up reading Bill Bryson’s Down Under to try to at least vicariously experience the same things they did.3

And then there are relationships. Not the generic kind, the intimate kind. Without spoilers, it’s fair to say this comes up a lot in the film and it shows just how hard some of the decision-making can be around what’s fair and what’s not. It’s something I struggled with for a long time.

My destructive cycle consisted of meeting someone, spending time with them, getting to know them better, being open about my condition, getting closer and closer to them and then totally self-destructing and ruining the relationship a couple of months after getting serious about things. I’m not even sure I knew I was doing it, but I systematically pushed people away until they stopped trying to come back.

The only reason I ended up getting married to my wife was because she was perceptive enough to see this and simply wouldn’t accept me pushing her away. She took it, she dealt with it and she kept telling me she wasn’t going anywhere. So eventually I stopped pushing and she helped me realise that it’s not my decision whether someone loves me or not, just as it’s not theirs that I love them. Love is love.

But that still didn’t stop me refusing to propose or get married until after I’d proved my transplant had been successful. I was listed for transplant at 23, got together with my wife at 24 and was eventually transplanted at 25. The last thing I wanted was to leave a 24-year-old widow behind, because it felt too unfair.

There are as many different views on this as there are people with CF— and I know and respect many people who have felt the polar opposite to me (including my wife!) — but the point is that what the film captures brilliantly is that relationships (of any kind) are difficult. The are harder than they otherwise could be. They are more complicated. Because CF is incapable of getting out of the way.

Death & Dying

While it may not be easy watching, for me it’s entirely true that when you get to Stella and Will’s stage of CF — what’s commonly called “end-stage” — death looms daily. Whether you choose to acknowledge it, talk about it, mope about it or make jokes about it, the Reaper always feels like he’s tap-tap-tapping away at the glass in your window.

The portrayal of how Stella and Will (and Poe) deal with this looming presence is a fantastic demonstration of how different people with CF are, how there’s no one rule for all of us and how we react to any given situation. Just look at all the people who really, truly hate this film, compared to my delight with it! In life, everyone deals with everything differently and there is no one way that’s better than another. There is only way works for you.

While I hope that helps people with CF, what I’d like to say to you, dear reader, is that there is truth in every one of the reactions you’ll see in this film.

What you don’t see is just how interminable waiting for a transplant is. How boring it is. How frustrating it is. How humbling it is. How much of a daily millstone it can become and so how easy it is to fixate on what may come next.

That’s what this film really teaches you: it’s not healthy to think about death so much, but I’ve been thinking about it since I became aware of my own mortality around 5 or 6 years old. When you know your life is likely to be shorter than everyone around you, it’s natural to focus on it and think dark thoughts, and that’s why we have to develop our own coping strategies to cling onto whatever helps us cope with that knowledge.

For those who want to avoid spoilers, this is the time to start scrolling rapidly, where I’ve made clear the spoilers have ended. Because this brings us finally to the most important part when it comes to the portrayal of CF in the film.

**SPOILER WARNING**

**

**

**

**

**

**

**

Losing friends

Watching the final months, weeks and days of people you’ve known and loved caused by the same condition that you know will eventually — transplant or not — kill you, is the exquisite torture of a life with cystic fibrosis.

For everyone with CF who gets to know other people from the community and is ‘lucky’ enough to survive long enough you will eventually reach the point where your friends die.

Several years ago, I remember talking to my grandfather about life in his late-80s. He was healthy, still walking miles every day and completing the Telegraph crossword most days, and had plenty of time to enjoy his six grandchildren. He said to me the hardest part was that he now had no friends. He’d watched them all die, been to all of their funerals, and he didn’t know what to do with himself. He was too old, he felt, to make new friends.

That’s exactly where I am now. I feel at 36 the same way he felt at 86. At last count (and yes, I do keep count, because I once forgot one of my friends who had died until I was reminded of them and the pain of that moment still lives with me) I had lost 24 friends and been to around half that number of funerals.

And you better believe that that makes you angry. Angry with the world. Angry with whatever higher power you may believe in. Angry with yourself for being happy that it wasn’t you, and angry for the family that it was their child and not your parents’.

It’s terrifying because it’s another one gone and you know you’ll be there one day. It’s terrifying because you know that one day those pews at the front will be reserved for you wife, your husband, your mum, your dad, that the poems will be read by your friends and your cousins, that everything you see happening now is in your future.

So when you see Stella react as she does to Poe’s death, you better believe that that’s 100% authentic. That the rage, the need for destruction, the need to feel something real is all-consuming, even if only for minutes. It’s all true.

When Stella says, “He was my best friends and I never even hugged him,” you can trust that nearly ever single person with cystic fibrosis has had the same thought, at the same moment, in their own lives.

Because life just isn’t fair. But for people with CF — and all those affected by it — it’s just that little bit more unfair.

**

**

**

**

**

***SPOILERS OVER***

Five Feet Apart might not be 100% accurate when it comes to life with cystic fibrosis, but it is 100% faithful to how it feels to have cystic fibrosis. And that, to me, is what I’d love everyone to experience.

[1] It took me a really long time to recognise that these visits were the ‘proper’ start of her day, and that spending time with everyone on the ward was a critical part of what she did, helping us all feel a little be less lonely.

[2] I was unable to type ‘chat rooms’ without quotation marks because it just feels so wonderfully dated!

[3] I met and became friends with Bill a couple of years later and was delighted to be able to tell him the difference his book had made to me at such a tough time.

1. It took me a really long time to recognise that these visits were the ‘proper’ start of her day, and that spending time with everyone on the ward was a critical part of what she did, helping us all feel a little be less lonely. [↩]
2. I was unable to type ‘chat rooms’ without quotation marks because it just feels so wonderfully dated! [↩]
3. I met and became friends with Bill a couple of years later and was delighted to be able to tell him the difference his book had made to me at such a tough time. [↩]