Consider your life expectancy being held in an hourglass? Now imagine that the grains of sand in your glass appear to be running out very quickly… how would you feel? What would you do differently or prioritise before your sand runs out?
I am 39 years old, married for over seven years to Katie, have a gorgeous three year old son (Felix), work full-time in London as an employee communications consultant and play regular sport, particularly hockey and tennis.
But, and it’s a big BUT… I have a life threatening condition called Cystic Fibrosis (CF) * and recently diagnosed Type 1 Diabetes. At birth, I was not expected to live much past my teens. All my life – every day – has been a battle to stay alive and keep defying the odds around my life expectancy (currently set at 38 years for CF sufferers, although for a long time it was fixed at 30).
I undertake a strict daily regime consisting of over 40 tablets, nebulisers, injections and physiotherapy just to stay as healthy as possible and live my busy life. There have been a lot of very dark, sad and fraught moments over the years and on a day-to-day basis. As you can imagine, when your longevity in this world is perpetually in doubt, it has a dramatic effect on what you do, how you think and your priorities in life. I often felt that my hourglass was running out on me.
End of the beginning
Historically, I tended to suppress all my emotions about CF and be very guarded about disclosing it to strangers. I never wanted to be viewed as the ‘ill person’ and be defined by my CF and I certainly never wanted anyone to feel sorry for me or be pitied. I played a lot of hockey (including representing England in my teens) so it felt counter-intuitive to flag any disability. However, I knew that life was likely to be short and having my own property, wife and child seemed unattainable.
For most of my life 30 seemed unachievable and 40 felt an impossible age to reach. This concern and fixation over my life expectancy was exacerbated after the sad deaths of certain CF friends leading up to my 30th Birthday. There are not too many people with CF that I know in the UK who are over 40 and it always felt inspirational when anyone reached this milestone.
But as I approach the 40 year milestone (March 2011), something has changed in me…I have flipped my mindset from a fear of dying to a desire to live for much longer as there is so much I still want to see and do.
I feel that I want to be more open with people about my condition and I now want friends to ask me how my health is going. Perhaps I want to be defined as someone who leads a normal life (job, family, sport etc) who just happens to have CF. I now view the future in a different way – welcoming each new year – and mentally project and expect a longer life with my own family to live it with.
I see reaching 40 as a celebration of my life to date and what it has taken for me to survive; but I also view it as a launch pad for the rest of my life – with my hour glass half full rather than half empty. Like a cricketer, I need to build on my 40 and push on for at least another 40! I also see it as a time of celebration for my family, friends, medical staff and complimentary therapists who have supported me and have been such a valuable part of this journey.
The countdown begins
As I look ahead to my 40th Birthday, it feels natural to also look back and reflect on the journey I’ve been on – my trials and tribulations, happy times and what it has taken for me to come this far. There’s a saying that ‘what can’t be cured, needs to be endured’ and by enduring all my life, I believe I have some extraordinary stories to share and some unique life insights. I want to share the approach I have honed over the years that keeps me alive and kicking, where CF does not define me but is just something I have to ‘get on with’ to lead my life.
Over the next few months leading up to my 40th Birthday, I am looking to share some of these experiences and enlightening life lessons. I also want to increase the general awareness and profile around CF, raising the public conscience in order to create a tidal wave of interest around the condition. Hopefully I will inspire everyone (healthy or those dealing with any long term illness) that even when you are at your lowest ebb with the odds stacked against you, that there is always a way to overcome.
What you can do
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Look out for future posts on my survival revelations and life lessons as I countdown to the 40 year milestone…
All the best
* Cystic Fibrosis (CF) is one of the UK’s most common life threatening inherited diseases, affecting over 8,500 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