Today marks one year to the day that my book went on sale. It’s a very personal project that means a huge amount to me. I wanted to write a post that not only reflects on the past year since the book became available, but also on the project itself. It took a huge amount of work to get to that stage in the first place.
The Birth of an Idea
I first came up with the concept for the book back in January 2018. The idea was to combine powerful portrait photography with storytelling to raise awareness of the impact cystic fibrosis has on the everyday life of patients. I wanted each subject to tell a unique story but I also wanted the combined project itself to tell a powerful story.
Shooting 47 portraits was crucial to the project. At the time, 47 was the mean average life expectancy of a person living with CF in the UK.
Challenge 1: How do you find 47 subjects?
Finding 47 subjects that not only have CF but are also happy for you to document their story in an intimate way is no easy task. My first thought was to approach the children’s CF clinic that my son attends as well as the nearby adult CF centre and ask if they might be able to hand out a letter to patients and parents explaining what I was doing and whether they might be interested in taking part.
You have to start somewhere right?
Using Facebook to build an audience
At the same time, I set up a Facebook page for the project. I added as much information about what I was trying to do and seeking people who might be willing to help. I posted a short video explaining a bit more about the project.
This was the point where things really started to gain traction. The Cystic Fibrosis Trust shared the video and the impact was… significant. Over the next few hours I had hundreds of messages from people wanting to be involved and it took me a few weeks to catch up on the backlog of emails.
Challenge 2: How do you photograph 47 subjects?
Planning 47 individual portrait shoots with subjects scattered all over the country takes some serious planning, especially when you have a full-time job. As the list of volunteers grew, I started to see trends and clusters of volunteers in areas I could travel to so I started to focus in on those areas. I had plenty of volunteers in and around my local Yorkshire area but I also started to focus in on the Lancashire area and around the Midlands.
Portrait #1 – Kyle
While starting to think about the logistics of potential road trips, I started to schedule in the first few shoots with some of the closer volunteers and on Sunday 11th February 2018 I shot portrait number 1, Kyle.
This was a huge landmark in the project. I knew I wanted all of the portraits to be consistent in terms of lighting and treatment so I was really nervous going into the first shoot about getting it right. After all, this was the marker that all the other portraits would follow. I was really pleased with how the shot came out and I shared it on the Facebook page to give potential volunteers a better idea of the kind of image I had in mind. At this point Kyle effectively became the face of the project.
Many months later my wife would say to Kyle that she was really fond of his portrait because she knew that it was the moment I believed the project could work. She’s exactly right…
From this moment on I was juggling going out to shoot local volunteers while continuing to have conversations, planning the road trips and creating the most impressive Trello board I’ve ever made to try and keep on top of everything!
Challenge 3: Don’t forget the end goal
At this point we’re still in February. It’s only a month or so since I came up with the idea of the project. I’m swamped with volunteers and emails, I’ve shot the first couple of portraits and I’m already nervously thinking about the logistics of the road trips to come. However, I already know that I want the final outcome to be a book.
I’ve never produced a book before so I’m also having to work out how to actually produce it. I have in mind I’ll probably aim to run some kind of Kickstarter campaign and I know that’ll require a lot of work.
Of course, in order to run a Kickstarter I’m going to need to know what my production costs are going to be so a month into the project I’m already reaching out to printers for samples and to get an idea on specifications and costs. Because I know how many portraits I’m going to be shooting, I can estimate how many pages I’m likely to have in the final book.
To be honest, at this point the book itself feels an awful long way away, but it’s already satisfying to hold a sample page in my hand. This is probably the first time the project has felt ‘real’.
Challenge 4: Keep people interested
By the end of February things were pretty crazy. The Facebook page was really gaining some traction, had passed 1k likes and was continuing to grow. I’d more or less firmed up the 47 subjects I was going to shoot (even if I hadn’t quite worked out how or when as yet) and I started to use Facebook as the key tool for keeping people updated on the project.
There was an incredible growing audience of people who really felt like they cared about the project as much as I did. I started to post maps showing where I was visiting with markers for shoots I’d completed and shoots that were to come. Each time a new green marker appeared I was greeted with a surge of support that really helped to keep me moving forward.
It’s worth pointing out that this phase of the project was hard. I can’t thank those of you who kept sending positive thoughts enough.
Challenge 5: The road trips
Ah the road trips. Without doubt the most difficult part of this project. Due to risk of cross infection, patients with CF can’t meet face to face. I’d have to visit each person individually in their homes and clean my equipment between shoots.
I’d need to work out an efficient route to visit each person in the region to maximize the number of shoots and minimize the number of expensive nights in hotels away from my family. BUT I’d need to balance efficiency of travel with safeguarding my subjects. People with CF often grow bacteria in their lungs, which can be incredibly harmful to other people with the condition so I’d need to know the current state of health for each subject and factor into my planning to ensure I was visiting everyone in the correct order to safeguard their health and reduce risk of infection. It’s hard to stress how important, and how difficult, this was.
Drive, shoot, sleep, repeat…
After months of planning, I managed to visit everyone outside of Yorkshire during the course of three weekend road trips. I visited 10 people across the Liverpool/Lancashire area over the weekend of 23rd/24th June 2018. Over the 21st/22nd July I travelled towards Birmingham and around the Midlands to shoot another 12 subjects.
Both weekends had a brutal schedule which only afforded me about 15 minutes contingency and around 10 minutes to eat. Both weekends I stayed away from home in a hotel positioned ready for my first shoot the following morning. The evenings consisted of getting something to eat, backing up photos and audio from the day, and recharging batteries (both the equipment and my own!).
In addition to the two long weekend road trips, I arranged a final all day trip on 18 August back down to the Midlands and back up towards Leeds. Over the course of the three road trips I travelled nearly 1,000 miles on top of the 300-odd miles I covered in and around Yorkshire.
I’m going to be honest. This stage of the project was brutal. The only thing that really kept me going during this part of the project was watching the sea of pins on my map rapidly turning green. With every portrait I shot the project took a huge step towards completion.
Portrait #47 – Marc
I shot the very last portrait for the book at 5:15pm on Saturday 18th August. I remember it vividly. Marc was the last subject and we were sat in the middle of a huge hall in a leisure centre where he works. After squeezing into some pretty tight front rooms it was a comically large space to shoot in.
The second I shot the last frame, I knew I was done and immediately felt slightly bereft. It was a really strange feeling to have finished and I spent the 2 hour drive back up the M1 trying to work out exactly how I felt about getting to this stage.
Challenge 6: The Kickstarter campaign
If you’ve read this far, you’ll be starting to understand that I’m quite an organized person, so it won’t come as a surprise to find out that I’d been working on the Kickstarter campaign for some time.
I knew that I wanted to launch the Kickstarter as soon as the last portrait had been taken. This gave me the month it took for the campaign to run to work on the processing, book design and typesetting. Assuming the campaign was successful I wanted to have everything in place to order the print run as soon as the Kickstarter ended.
Kickstarter doesn’t really like charities
It’s worth mentioning that Kickstarter’s rules state that ‘Projects can’t fundraise for charity’. My plan was to donate £5 to the CF Trust for every book sold so this slightly vague guideline concerned me.
Before launching the campaign I had a long conversation about this with their integrity team. I wanted to be completely transparent about my plans as I didn’t want to run the risk of the campaign gaining traction and then being pulled. It probably won’t surprise you to know that just in case we couldn’t reach an agreement I already had an IndieGoGo campaign prepared (Their terms are significantly less strict generally).
Eventually Kickstarter were happy as long as I was careful to state that I would personally donate £5 for each book sold as opposed to £5 from each book sold being donated to charity. Semantics…
We are go for launch…
On Tuesday 21st August 2018, just three days after I shot the last portrait, the Kickstarter campaign launched. (To be honest it was ready to launch the day before but I read somewhere that Tuesday’s are the best day to launch a campaign.)
When I finally launched the Kickstarter campaign I was confident I’d reach the target of £2,000. I’d built an engaged audience and I wasn’t raising funds to recover any of the time or costs involved in making the book. I just wanted to cover the cost of the first print run. Quite frankly, at this point I was printing the book either way, but a bit of help was certainly welcome.
What I didn’t expect was quite how quickly the target would be reached. Within 8 hours of the campaign launching we’d passed the goal and the project became the number 1 most popular photobook project on Kickstarter. It was incredible. By the time the campaign had ended on 20th September we’d hit 254% of the target.
Time to make a product…
Things got really exciting (and busy) at this point. While the campaign had been running I’d been going back through all the recorded audio (some 50-odd hours worth) and writing the text content for the book, designing the final page spreads and preparing the book artwork for print.
I finally sent the book off to print on 25th October. At this point a huge panic set in as I’d only proof read the book about a million times so I was worried I might have missed something.
Giving back. Childhood novelty cheque ambition fulfilled…
The main reason for this project was to raise awareness of cystic fibrosis and to raise funds for the CF Trust. So when the Kickstarter funds cleared it was a huge honour to be able to make the first donation from the copies sold via the Kickstarter rewards.
I also got to fulfill a lifetime ambition of handing over a jumbo oversized novelty cheque!
Reaching the end goal…
The 12th November 2018 marked two very special occasions. Firstly, I took delivery of the first batch of 300 books—an incredible feeling of achievement and the result of nearly a year of my life. Secondly, the 12th November 2018 marks the day I realized quite how large and heavy a delivery of 300 books actually is.
The first warning sign came when the artic lorry pulled into the street. The second warning sign came soon after when the driver revealed the giant pallet of books that was then lifted down on a crane. I don’t really know what I thought 300 books looked like but clearly I’d missed a trick somewhere in my meticulous planning.
It’s hard to explain quite how exciting opening the first box and flicking through the first copy of the book was. It was an incredible experience. A fairly obvious printing error throughout the book soon brought me down to earth though. It quickly became apparent that it affected quite a lot of the copies. Happy days! Cue a batch of reprints. Moment of triumph slightly diluted.
Fulfilling Kickstarter rewards
Two days after receiving the first batch of books from the printer I started sending out copies of the books and fine art prints that made up the Kickstarter rewards.
At this point I got pretty friendly with my local post office who even gave me my own sacks to drop batches of books off in. I felt like a slightly over-tired, out of season Santa.
Going on general sale
Which brings me back to today, the 19th of November. This time last year, having cleared the backlog of Kickstarter orders, the book finally went on sale.
Nearly a year of my life led to this. I’m a Web Developer by trade. I’ve been making digital ‘things’ for over 20 years. It’s an incredible feeling to be able to hold a tangible product in your hands and think “I made this.”
This was a labour of love. I shot the images, wrote the text, designed the artwork, chose the paper and finish and sourced the printers. I packed each book into an envelope with a handwritten postcard (which I also designed) and I took each one to the Post Office. To say I threw everything into this is an understatement.
Why isn’t the book available on Amazon?
My original plan was to sell the book on Amazon but to be frank, their commission meant that they’d receive nearly as much per book as I was donating to the CF Trust.
Clearly there’s a huge benefit to being available on Amazon but to me I couldn’t justify the cost. Good quality photo books are costly to produce and with the CF Donation the margin on these books is pretty low. I chose to go it alone, selling directly from my site.
The last 12 months…
I wanted to write this post not only to go into some of the detail of what goes into a product like this, but also to reflect on the first anniversary of the book going on sale. A lot has happened in the year that followed.
5 Star Reviews
The response to the book has been incredible. It’s had 5 star reviews and I’ve sent copies all over the world – to Australia, New Zealand, Japan, Singapore, United States, Canada and all over Europe. As well as a legal deposit in the British Library, I also had requests to send copies of the book to Oxford University, Cambridge University, National Library of Scotland, National Library of Wales and Trinity College Dublin.
Live TV appearance
I got to go on live TV (gulp!) and speak about the book and about CF in general. It was exciting and terrifying in equal measure. Thankfully I had Matilda (Portrait #14) with me to hold my hand.
National press coverage
I also had some nice press coverage, including a feature in the national press, appearing in the Daily Express.
The brutal side of CF
Very sadly, we had to say goodbye to two of the people I was lucky enough to meet as part of this project.
Dave was taken from us just a few weeks after I shot his portrait. If you have a copy of the book you’ll see it’s dedicated to him. Unfortunately this year we also lost Luke. When I met Luke he was recovering from a lung transplant which he talks about in the book. CF is a cruel condition and while I only met Dave and Luke for a short time, I remember them both very fondly.
Breathe easy guys… 💛
A final thank you
Finally, to every one of you who supported this project, shared my posts, backed the Kickstarter, bought a book… thank you.
The book has raised nearly £2,000 for the CF Trust so far. The CF community have recently received the incredible news that the UK have finally done a deal to receive life changing drugs. This comes after 4 years of campaigning by the Trust and the wider community. The work they do is incredible and it’s been a huge honour to support their work.
Limited copies still available!
I’d love to hit that £2k mark. I have a limited number of books still available so if you’d like a copy these are still available to buy. When they’re gone, they’re gone…
Thanks for reading!
About the author: Simon Wiffen is a Leeds based photographer specializing in family, lifestyle, portrait and commercial photography. You can see more of his work by visiting his website or following him on Instagram, Facebook and Twitter. This post was also published here.