The recent death of my father has given me fresh perspective on how I can and will keep battling the life-threatening illness, cystic fibrosis (CF).*
People have kindly told me that my struggle with CF has given them perspective on their own lives, how to contextualise tough times and what to be grateful for. But where do I draw my own perspective and health context from?
Apart from the obvious motivation of staying alive to be a husband to Katie and a father to Felix, seeing others out and about whom are physically and/or mentally in worse shape than me gives me all the incentive I require to knuckle down with my own fight against the odds.
I witnessed first-hand the plight of my dad who suffered stoically for nearly two years with one of the motor neurone diseases (MND) until his death last week, aged 81. MND are a group of neurological disorders that selectively affect motor neurons, the cells that control voluntary muscle activity including speaking, walking, breathing, swallowing and general movement of the body. They are generally progressive in nature, and cause progressive disability and death. MND is not that well understood by the general public and there is no cure. Here there is a striking similarity with CF.
Depending on which version of MND one has, there is very little that seems to prevent the advance of the deterioration to the sufferer. It felt like my dad was in a ‘plunging underworld of sinking’ to quote from Siegfried Sassoon’s WW1 poem Stretcher Case.
They say that it takes one to know one and on the subject of suffering, I feel that I was able to look into my dad’s eyes and better appreciate his true predicament and inner demons. Being permanently ill has allowed me to more easily empathize with others going through similar ordeals.
My dad’s unfathomable condition has had an indelible effect on me and my creative ability to seek perspective and find any good from a truly awful situation. I am immediately thankful for the enormous part he played in keeping me alive through launching my hockey career and raising, with mum, hundreds of thousands of pounds via CF fundraising activities.
The shocking finality of losing my dad has very much knocked the wind out of my sails, but conversely his death has made me feel more alive than ever. It helps me to keep shaking off the mortal coil that he unfortunately could not.
It has liberated me that I am still here, seeing each new day and unlike my poor dad, I do have the opportunities to fight back against my illness. I can keep reinforcing the ramparts of my castle against the invading foe that is my CF and diabetes. Both physically and mentally I can help myself to counter CF and live a full and fun existence.
After my September intravenous treatment, I recently began using a new antibiotic inhaler which is helping my lung function, especially important with winter looming. I am being even more fastidious with measuring my blood sugar levels and taking insulin with every meal so that I can keep my diabetes in check. Also, thanks to Great Ormond Street Hospital and Nuffield Health, I now attend a local gym and am definitely benefiting from the exercise machines and weights (while watching Sky Sports TV!).
Dissimilar to my dad, I have had my ‘hard truth’ all my life since my mum diagnosed me at six months old and as horrible as my medical regime is every day for 41 years, I don’t know anything different. I’d clearly rather not have CF but I honestly believe that it is easier to adapt to a condition from birth rather than later on in life after a period of healthy living.
When I next take to the hockey pitch, my dad’s spirit and sporting vibrancy will be with me every step of the way. I will live and breathe on in his memory, galvanized beyond all belief, that as grim as my illness is, I can still control my own destiny.
It’s what he would have wanted…
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 if you have not already done so.
Yours cup half full.
To find out more about MND, visit: http://www.mndassociation.org/
* Cystic Fibrosis 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.