When people look at me, they see a forty-something married man with a gorgeous wife and son, working full-time in London and playing regular sport.
What they don’t see is my chronic illness, cystic fibrosis (CF) which clogs up my lungs and digestive system with a thick sticky mucus. It makes it hard to breathe, exercise and digest food.
I undertake heavy and demoralising daily medication which brings regular dark, sad and fraught moments.I cannot afford to let up or cut any corners medically, as any big lapse could be my undoing. It is relentless – like having a heavy chest cold every day of your life – and unforgiving, killing many sufferers early. Throughout my life, I’ve had the misfortune to see many of my contemporary fellow sufferers pass away in childhood, teens or early twenties. There is no cure.
At birth I was not expected to live past 17. All my life – every day – has been a battle to defy the odds around my life expectancy. My very existence has always seemed held in an hour glass with the grains of sand running out fast. Every hour of every day is important as I never know when my hour glass will run out of time.
IMAGINE: how would this affect how you lead your life, what you prioritise and the pace you live at?
What lies beneath?
To compound my life, CF is not that well known, understood, cannot be easily seen or ever properly imagined by most people. It’s like a form of ‘locked-in syndrome’ as all the damage is on the inside and not very obvious to the naked eye.
Historically, I tended to suppress all my emotions about CF and was very guarded about disclosing it to strangers. I never wanted to be viewed as the ‘ill person’ and be defined by my condition and I certainly never wanted anyone to feel sorry for me or be pitied.
In my late 30’s, I had an epiphany that surviving CF has 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. The addition of type 1 diabetes to my medical regime reinforced the feeling that my survival was something to be celebrated and shared.
The power of opening up
I decided to take the lid off my own Pandora’s Box and write a diary of the year leading to my 40th to properly reflect my trials and 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 the 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, that there is usually a way to overcome.
There’s a saying that ‘what can’t be cured, needs to be endured’. By enduring all my life, I have some extraordinary stories to share and some unique life
insights. The book I’ve recently published highlights:
- My formula for staying alive and defying the odds.
- My physical approach I’ve honed over the years that keeps me alive and kicking – the utter commitment to manage my daily medication.
- The importance of regular exercise and harnessing my motivation to play sport even when it seems impossible.
- Mentally shaking my disease every day where it doesn’t define me but is just something I have to ‘get on with’ to lead my busy life.
- The cathartic nature of opening up about my struggle after nearly 40 years of silence and helping others.
Editor’s Note: It’s such an honor to know and have worked with Tim over the past several years. When he opened up to me about his illness, I was stunned to know he had been enduring so much on his own and it reminded me of my own battle with cervical cancer. Our battles and triumphs bonded us and I’m so proud of him for having the courage to tell his story so powerfully and visibly. One lucky reader (commenter below or randomly drawn newsletter follower) will get a copy my compliments.
Photo credits: Tim Wotton