Opening Up the Power of Us - CF Week 2015

London-based Tim Wotton marked his milestone 40th birthday with the publication of his blog, ‘Postcards from Earth’, which in turn led to him writing his memoir: 'How Have I Cheated Death? A Short and Merry Life with Cystic Fibrosis'. Now 44, Tim has just won a Best Achievement book award. Here he explains the power of the CF community opening up…

As cystic fibrosis is not well known or understood, cannot be easily seen or ever properly imagined by most people, I tended to suppress my emotions about CF and was very guarded about disclosing it to strangers. I never wanted to be defined by my condition and I certainly never wanted anyone to feel sorry for me or be pitied.

When I turned 39 with the big and almost mythical 4-0 looming, I had an epiphany that surviving CF had been the biggest achievement in my life but it was hidden away and I wasn’t talking about it or using it for my own or others’ benefit.

I decided to write a diary of the year leading to my 40th to properly reflect my trials, tribulations, happy times and what it has taken for me (physically and mentally) to survive this chronic illness for so long.

I wanted to increase awareness and understanding of CF and share my bigger picture of life perspective, perseverance and optimism with a wider audience. One prime driver was to inspire people that even at your lowest ebb with the odds stacked against you, there is usually a way to overcome.

One additional challenge and cruel twist is that CF can be a lonely and solitary condition as us CFers cannot support each other physically as we’ve been advised not to mix face-to-face. I felt the written word could help bridge this gap for the CF community.

Actually reaching 40 in 2011 was such a dramatic, life-affirming landmark for me that I felt I needed to share my experiences and survival lessons. Still being alive with CF was not a fluke and I had many useful strategies and anecdotes that needed to be offered to others. Personally, I had an overriding desire to reduce the burden of carrying this horrific condition on my shoulders by opening up more.

The reaction to my blog was nothing short of spectacular with over 60,000 global hits. Family and friends wowed me with how much they were enjoying my writing style and close friends confided they didn’t know half of what I had to deal with on a daily basis to still be alive.

The biggest reactions I received were from the adults with CF, and the parents of young sufferers.  Indeed, the moment when I really knew I was making a difference was a blog reply from a mum, which stated “Reading your blog gives me hope for a future for my CF son, when sometimes there seems no hope at all.”

By opening up through my blog, I noticed the new transparency about my CF struggle was being reciprocated by many people. This felt empowering and I was motivated to take it to the next level. As I had written a diary during the year leading to my 40^th, I decided to embellish that into a full-blown book.

As I am a full-time business consultant I had to write the book in my spare time and would often use my underground journey on the Northern line to edit chapters and my lunchtime and evenings to type up the text.

I went through an emotional process with writing this book as I dredged up my experiences and associated feelings. I would always revert back to asking myself ‘What do I always think, feel or say about this?’ Once I’d landed the right narrative I instinctively knew and it always felt cathartic.

I had a deep desire to write profoundly about CF with candour and lack of sensationalism or pity, which is in keeping with the mind set of people with cystic fibrosis.

As I began to delve deeper into my daily health challenges and uncover my personal demons it became obvious to me that being authentic meant bringing out my inner feelings on every facet of what I’d endured to try to leave a normal life. The health battle I had always struggled to convey verbally to people felt easier to expose in words.

Writing ‘The Hardest Part’ chapter about the loss of my friends  with CF was the toughest to write by a distance. Many a tear was shed onto the paper as I tried to unearth the raw emotion of how it felt to lose fellow sufferers who had every right to live as long as me.

The final book is a thought-provoking and amusing memoir, which elaborates on my extensive medical regime, going to university, getting a job, the importance of alternative therapy, faith and a positive mental attitude to counteract the multitude of dark moments. It also highlights the significance of family support, my marriage to Katie and the rollercoaster journey we undertook to start a family which finally delivered our awesome son Felix.

I am already reaching a global audience with this book. The CF community are deriving some hope and survival strategies from my story while the wider audiences are definitely understanding CF better and appreciating what it takes to combat it on a daily basis.

In this brave new virtual CF world, where CF folk can’t openly meet up and chew the fat, the power of the written word in the form of social media, forums, blogs and books is filling a void and allowing us to open up in ways unimaginable even 10 years ago.

Having a book published and available for anyone in the world to read feels awesome, humbling and bewildering in equal measures. Judging from the feedback received so far, my memoir is making a real difference. To win an award at the UK’s People’s Book Prize has given me the extra motivation to keep writing, being honest and to help others with my life insights.

The book, which features an introduction by actress and long-time Trust supporter Jenny Agutter, is available to buy from online retailers Austin Macauley Publishers, and Amazon (ISBN 9781849637190).