This last month has seen me notch up another milestone – that of book author – as I published a memoir of my 40 year battle defying the chronic illness cystic fibrosis (CF)*. Read on for more exciting news…
The month of May really has been crazy. It started with a house full of 15 marauding children celebrating our wonderful boy’s 7th birthday. I then got a cold which wasn’t helped by playing a Phantoms hockey game in the West of England (the night out was good though). Since then I’ve been to Holland with work and I was severely chastened by the 18 months anniversary since my poor dad passed away from Motor Neurone Disease.
And now my book is published by Austin Macauley and is available for anyone in the world to read. That feels pretty awesome, humbling and bewildering in equal measures. Indeed, last week involved one of the most surreal moments in my life – lying in bed at night time, I turned over to witness Katie reading my actual book!
So, how did this book reach its ‘tell by date’?
Telling my story
After reading Jean-Dominique Bauby’s exquisite chronicle ‘The Diving Bell and the Butterfly’ in the mid 90’s, I always knew that someday I had it in me to write my own candid, funny and profound book. Well, that day has arrived.
Back in 2011, I felt that reaching the age of 40 with CF merited the sharing of my battle with this relentless condition. I wrote a diary during the year leading up to my illusive 40th and this book is the output.
To seek re-assurance on my story and written style, I have used some extracts from the book in my blog posts over the years to assess their impact. I like to think that the finished product is a thought-provoking and amusing memoir which systematically unpicks what it has taken me (physically and mentally) to defy the medical odds both with the CF and recently diagnosed type 1 diabetes.
The book elaborates on my extensive medical regime, going to University, getting a job, the importance of sport, 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 us the awesome Felix.
I am hoping to reach a global audience with this book, the first book written by a CF sufferer at 40 (that I’m aware of). The CF community should derive some hope and survival strategies from my story while wider audiences will hopefully understand CF better and appreciate what it takes to combat it on a daily basis.
I hope that my candid story will provide insight and solace to anyone suffering with a chronic condition, but equally offer perspective to perfectly healthy people.
What’s in a name?
The title of the book, ‘How Have I Cheated Death?’ is not an obvious choice but it was the title of my Guardian news feature three years ago which is still popular. Trust me, I did take my time deciding on this and I looked at many other book titles…
I could have gone for some obvious titles like ‘Breathless’, ‘Survivor’ and ‘Every breath I take’. Being mischievous, I could have gone for some comedic or playful title such as:
‘Confessions of a serial pill taker’
‘Everything you wanted to know about CF but were afraid to ask…’
‘How I cured my 40 (pills) a day habit?’
‘This is 40… with CF’
‘Gone with the cough’
‘Coughin’ in the rain’
‘The Coughing Games’
But in the end, I was keen to be provocative and de-mystify CF for a wider audience, so I kept the Cheating Death one instead. I hope it gets your and other people’s attention…
How to order a copy
Go to the relevant sites below or in the UK go to a WH SMITH, Waterstones or Foyles bookstore and give them my name, book title and this ISBN number (9781849637190). It’s also available via GARDNER’S, BERTRAM’S, AUSTINMACAULEY.COM, BLACKWELL’S, PLAY.COM, AMAZON.CO.UK AND AMAZON.COM
I sincerely hope this book strikes a chord with anyone who is kind enough to purchase a copy. Also feel free to share this book news with your family, friends and work colleagues if you feel they would be interested.
I am looking to fundraise for CF at the same time as launch this book and will keep you posted on forthcoming activities.
Our CF lives are a narrative of triumph over adversity. By overcoming this rotten illness day-in-day-out, we all demonstrate what cannot be cured needs to be endured and thus offer hope and inspiration. I’ve fortunately lived long enough to tell you my narrative. I hope it reads well…
Win a copy of my book – if you can suggest another CF-related book or film title, I’ll choose my favourite one and post a free copy of the book to the winner… best of luck!
I will keep you posted on my life affirming moments, trials and tribulations as and when they happen. Please keep reading and sharing my blog and sign-up (on the right hand side tab) if you have not already done so.
Yours cup half full.
Congratulations to my cousin Sarah and CF friend Emma for successfully completing the recent London Marathon and good luck to my wife Katie as she runs both the London 10K and Parks Half-Marathon in the next few months. Should you wish you can sponsor Katie here.
* Cystic Fibrosis is one of the UK’s most common life threatening inherited diseases, affecting over 10,000 people. The condition affects the internal organs, especially the lungs and digestive system, by clogging them with thick sticky mucus. This makes it hard to breathe and digest food. Each week, five babies are born with the condition, however, each week, three young lives are also lost to it. There is currently no cure for CF. However, existing gene therapy trials in the UK are bringing people with the illness closer to a form of cure but CF is not that well known and would benefit from more public donations. For more information and to find out more view the CF Trust Website.