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**

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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.

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***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. [↩]

Following on from yesterday’s post about faking it and how your inner confidence shines out through your actions, today’s post continues on the theme of perception.

I’ve just watched this video from Gary Vaynerchuk1 and it’s hard to do so without being inspired:

This is a guy who knows how he’s perceived, knows what people expect from him when they first encounter him, but flies in the face of it with wit and confidence.

Knowing how people see you is key to finding your personal – or corporate – brand. I’ve written before about the importance of recognising your place in the market to help drive your growth, but it’s just as important to know not just where you see yourself, but where others see you, too.

1. no, I didn’t really know who he was either until turned onto his stuff by Adam Baker [↩]

Many of us have had a taste of success. Some of us dine on it frequently, for others it’s a rare treat. What it does is to help us all feel like we’re doing what we should be in life.

Too often, though, we define ourselves by how we feel. We even decline things by saying, “I just don’t feel like it today” – we put so much stock in feelings that we don’t stop to look at what and who we actually are.

This quote got me thinking:

It’s not about feeling like a filmmaker, it’s about being a filmmaker.

Drake Doremus, The Wrap

Doremus is talking about filmmaking and how it’s better to shoot for a lower target budget in order to be able to make films as opposed to holding out for the mega-budget and never actually making anything. It’s also about how the trappings of a “big” production don’t make the film, it’s the kit, the crew and the cast who make a film what it is.

It’s time for us all to stop chasing the “feel” and start “being” what we want to be – filmmakers, entrepreneurs, writers, artists; we all have goals and we all want to achieve them, but if we set about doing the things we need to do to get there, no matter what, we’ll arrive and find success much quicker than doing all the things that make us “feel” like we think we ought to.

 

Inspiration comes from many quarters all around us. Sometimes it’s something we see, sometimes something we here. A lot of times for me it’s things I read.

I’ve written previously about Seth Godin and his new book ‘Poke the Box’. After reading the free eBook SXSW Pokes, I immediately downloaded the Kindle version of the full book and read it quicker than I’ve read most things before.

Poke The Box is all about starting, initiating, changing the status quo without fear of failure. Reading it struck a chord with me. Not only had I decided to give up fear for lent, but I was also living a more fearless life, committing myself to things and driving myself forward in several areas of my life, albeit slowly.

While going through my RSS feed one day, I wondered if it wouldn’t be nicer to have a single place on the ‘net that collects all of the best content, particularly for filmmakers. There’s Hollywood Wiretap – a great site for news on big studio movies – but nothing really similar for blog posts and articles that are aimed at, written by and for the benefit of independent filmmakers.

TheIndieFilmHub.com was born in mere moments and, no sooner had the idea come to me than I had set about making it happen. This project, which launched yesterday, is my poke at the box, my attempt to get something shipped when other projects and ideas have been stagnating or not progressing as quickly as I’d have liked.

The Indie Film Hub is a place indie filmmakers can go to find the best, most useful, most relevant and entertaining content on the web, all personally curated. Every post on the site is hand-picked by a real, genuine human being – no bots, no aggregators, no automation whatsoever.

I hope, in time, it will become a great resource for filmmakers and be the first stop on their hunt for content. But if not, at least I started something. At least I poked the box.

When it comes to living your life creatively, you – the artist, the filmmaker, the writer – are the single most important person in your world.

By setting out to impress other people, we are doomed to following the path of what we *think* people want to see, only ever re-creating things that have gone down well before or that we are pretty sure will be swallowed without too much sugar on the spoon  ((apologies to Mary Poppins fans)).

The only person we as artists need to satisfy, impress or please is ourselves. By creating honest work, true to our core sensibilities and interests, we create personal work that carries a stamp of authenticity that will carry it onto a higher plane.

That’s not to say what works for us will sell like wildfire, will be the next break-out success or even make an impact. But all of those things are far more likely to happen if we start with the most important person in mind.

*Special thanks to Lucas McNelly on Twitter for inspiring this post.

You’re right, you can’t actually make ‘The Hobbit’ as your next film, but you can learn a huge amount about creating and nurturing your audience from the get-go from Peter Jackson‘s latest adventure in Middle Earth.

Yesterday, production began on the two-film adaptation of the J.R.R. Tolkein book and no sooner had the press release hit the wires than Peter Jackson himself had launched his new Facebook Page. Yes, it’s a personal one, but you can be sure that it’s going to be used almost solely to promote his current flick up until its release in 2012.

This early-bird establishing of connection and communication with the audience (which is something PJ excelled at with both ‘The Lord of the Rings’ and his 2005 ‘King Kong’ remake) is crucial for filmmakers across the budget range.

While Jackson and the Hobbit team may be walking into an audience of millions of eager fans across the world and you may be staring at an audience of less-than-eager family members at the start of your journey, focusing on and starting your social media and marketing efforts from Day 1 is a key principle in audience building for independent filmmakers.

Just ask your friendly local PMD, a post title created by Jon Reiss and being exemplified by the sterling work of Adam Daniel Mezei over at pmdforhire.com – creating your film with your audience in mind is crucial to your success and the more (and earlier) you can connect with them, the more successful you will be.

I don’t want to pour more scorn on the much-derided Spider-man: The Musical, enough of that has been done by commentators and citizen reviewers across New York, the US and, increasingly, the world. I make no comment on its artistic merit; I’ve not seen it and therefore am in no position to judge.

I did, however, see a lesson for all artists and creatives in the development and re-development of the show following this piece in the New York Post this week. The key phrase for me:

[Phil] McKinley’s going to turn the show into a shorter, special-effects-driven family spectacle more suited to the world of Steve Wynn than Steve Sondheim.

Michael Riedel, nypost.com

For me, if you’re creating a musical from a comic book, the tone and the feel of the show needs to reflect that of the book itself. The same holds true for making movies and TV shows of comic books, too.  What I don’t understand about Spidey is why have a short, special-effects-driven family show is a change of direction – that’s exactly the sort of show it should have been in the first place.

As any social media and marketing expert will tell you, knowing your audience is key. And the audience for Spider-man: The Musical surely wants to see something breath-takingly spectacular with a simple, familiar storyline that they don’t have to concentrate on too much.  From the reports abounding on the ‘net, that’s not what they’ve got.

Knowing your audience and knowing exactly what it is you’re making is crucial to the artistic and commercial success of any artistic project. Even for little indies who don’t want to think about “commerce” and “business”1, it’s vital to understand who is going to consume your eventual product, even if they’re not paying for it.

What else would you want from a Broadway/West End show based on a comic book? I can’t think of anything other than good fun and spectacle. It’s the old K.I.S.S. message: Keep It Simple, Stupid.

1. as misguided as that is [↩]

This week’s Lowdown focuses on communication tools for filmmakers:

Communication, as we all know, is key to establishing, maintaining and getting the most from our connections and relationships. And it’s important to remember that “getting the most” doesn’t just mean “getting what you want” – all relationships in life should be a two-way street. As soon as we forget that, we’re in trouble.

SKYPE

The biggest and most obvious communication tool for filmmakers is Skype. It’s free, it’s easy-to-use and it offers three main methods of connecting with someone: text-based instant messaging, voice-only internet phone calls and, more famously, video calls.

There is nothing better than meeting with someone face-to-face; relationships will always be stronger and more cemented simply by being or having been in someone’s company. Failing that, however, video calls are by far the best way. You can not only hear the person’s voice, but you get to see their facial expressions, too. When you’re part of a global community of filmmakers, being able to connect with people on the other side of the world and work with them in close-quarters, Skype video calling is simply the best solution.

Voice calls are second best, but Skype still allows you to have a conversation, to hear the other person and to enjoy proper two-way communication. And, of course, it’s still free, which means you’re saving significant amounts on your phone bill.

Lastly comes instant messaging. IM can be a great tool for chatting things through quickly with someone or floating ideas while you’re doing other things, too. It’s a productive communication tool for conversations that don’t require 100% attention the whole way through – you can dip in and out with pauses between responses. The main issue with IM is that it’s far too easy to be lazy and use it when you should really pick up the phone and talk to someone.

WHATSAPP

Alongside Skype, which is often seen as the catch-all free communication tool, is the fantastic WhatsApp Messenger. WhatsApp is both brilliant and significant because it’s one of the first cross-platforms communications apps that lets you connect with friends and contacts using instant messaging from your mobile device.

It works on iPhone, Blackberry and Android smartphones and uses the same internet connections and technology that gives you your email to keep you in touch without any charge beyond your usual monthly phone service.

The biggest barrier to this right now is the fact that both sides have to have the app installed on their device, so the more we can encourage each other and our friends and connections to download the app and sign up, the more free communication we’re going to get from it.

WRAP UP

Communication tools are like all the other tools I talk about on here: they’re great if you use them correctly and for the right purpose. While all manner of free communication tools are a huge boon to us as filmmakers and content producers, they can only be as good – and as productive – as we allow them to be.

So next time you find yourself typing out an email, stop and think if you’d be better connect with the recipient in a chat. Next time you try to connect with someone in a chat, think about whether you’d be better off calling them on Skype. And the next time you connect on Skype, think about whether what you have to say would be better done using video so they can see you’re not angry, pissed off or disappointed.

Good communication is the cornerstone of good business and at the end of the day, good business is what we’re all trying to achieve.

The most common question I get when talking about the 3 Peaks is “Why?”.

I have two answers, both of which are exemplified in things I saw on Twitter today.  Number one (courtesy of the marvellous Sheri Candler):

Number two is this series of Tweets from a very close friend:

Just had call number 5 but no good for me. Gutted.

@Tor87

Feeling awful but thank you for keeping my spirits up, so many lovely friends. Please remember the amazing donor and their family today. x

@Tor87

God this has hit me hard. In lots of pain, breathing awful, body wont work. You cannot imagine.

@Tor87

Not only has Tor had to suffer yet another false alarm, but even while she’s hurting, struggling to breathe and exhausted from over 5 hours of travelling, she’s thinking of others.

And when she says, “You cannot imagine,” she absolutely means it. If you haven’t been there, you cannot possibly understand the rollercoaster of emotions that is involved with a false-alarm; being prepared to have your life changed forever before being told it’s not going to happen. And knowing that if it doesn’t happen today, it may never happen at all.

You want to know why I’m subjecting myself to 24 hours of mountain climbing following 3 months of hard training?

Tor is why.