It’s not just the sufferer who’s affected by the diagnosis of a life-threatening illness, like cystic fibrosis (CF)*. Close family and friends have a crucial role to play as well…
During the recent Jubilee holiday in the UK, I met up with my family in Southampton – my mum, dad and both of my brothers were all in attendance.
As I’ve mentioned in an early post, I never underestimate the importance of family support to my lasting health and well-being. Having said that, my experience has been that there’s a tricky balance to be found between being shown love and the right level of care and being overly smothered and mollycoddled. Over time and through trial and error, my parents got this correct balance while engraining in me the bespoke health risks of CF so that they became second nature to me and I could be independent.
I was empowered by them to take ownership of my treatment and they made me believe that most things in life were possible. I felt that CF wasn’t the end but the start of my life; that my stay on this planet wasn’t going to be about merely existing with CF but it could be about living as full a life as possible and making a difference to others.
There’s more to family support than just my parents. Siblings, extended family and close friends also play their part. My brothers Chris and Jez are very much enrolled into the equation and have been with me all the way on this rollercoaster journey.
I smile because they are my brothers. I laugh because there’s nothing they can do about it.
Jez is my twin – two miracles instead of one – and is amazingly a non-carrier of the CF gene. He has been a very consistent thread throughout my life, a mutual fan of many teen comedy films and we have the same pre-University social buddies. He manages the subtle trick of engaging me about my health when needed but without being over-bearing. He’s been on hand when I’ve been at some very low- ebbs, not least when I read the news nine years ago that Alice Martineau, the talented young English singer, had sadly succumbed to CF.
Chris, my elder brother, is a carrier of the CF gene. He hates my suffering and I think he keeps a lot of his internal angst to himself but it comes out in little comments. “You poor bugger!” he’ll say when he hears me coughing heavily on the hockey pitch. We have a solid bond through playing hockey (for and against each other) and through social and work environments. Chris did rather add to my woes for a while when I was a toddler by pushing me down the stairs and breaking my leg. As you can expect, I’ve got over this now and don’t bear any lasting grudge 🙂
Jez and Chris’s feelings about my condition might include a mix of guilt (that it was me with the illness and not them), helplessness, sadness, worry and frustration about my daily suffering and survival regime. After all, this isn’t just short-term sympathy for a cold or an injury – this covers over 40 years – a lifetime of being around an ill and struggling sibling. I can only imagine that this has a discernible effect on the close family and friends of anyone who suffers.
I’m sure they have been involved in hundreds of little conversations about my health that I would never be privy to. Indeed, I’ve noticed over the years that some people tend to ask my parents, brothers and wife how my health is rather than ask me directly.
I imagine that my brothers have faced up to the difficulty of explaining my CF to friends and colleagues and being faced with the pretty standard barrier of CF unfamiliarity – “cystic what?”
How would I feel if it was one of my siblings who had CF and not me? Based on recent evidence, I’m not so good being the carer or seeing loved ones suffer. Maybe my make-up and coping mechanisms are better suited to being the sufferer rather than the carer?
I feel that all my close family and friends have CF by association with me – seeing my trials, tribulations, anger and frustration; witnessing my pain, medication and intravenous (IV) treatments and hearing close up my barbaric coughing.
My brothers have always made the effort to visit me during each of my 60 horrendous IV sessions; buying me little gifts, usually jelly babies. Now that I’m a diabetic, I even share some of them around!
They tried to intervene during my twenties when I was on a path of social self-destruction; but for the most part they would have had to hold their counsel and let me get on with it. It was a case of buying me another rum and coke rather than ask me to stop!
Typical of brothers, we played a lot of different sports inside and outside of the house, breaking each other as well as the interior and garden. Importantly they treated me no differently and no quarter was ever given nor taken which is exactly how I would have wanted it. Without realising it, they made me feel one of them – healthy, normal and not afflicted.
On most summer holidays, us brothers would find some grassland or wet hard sand and play hockey with our dad who taught us the ‘Wotton Wobble’ hockey skill – his legacy to us. It’s worth noting this is not something that happens after a night of too many drinks!
They must be proud of all I’ve achieved, not least to still be alive at 41, when they would have been gearing themselves up for my early demise for the majority of our time together. I doubt they take my longevity for granted. At chronic times, they would have hoped for the best but feared the worst.
For the last five years, they have been loving and caring uncles to my son and I can see elements of Felix in both of them. They appreciate the extra motivation being a dad myself now gives me in keeping on top of my CF and diabetes.
I’ve already got Chris in mind to coach Felix hockey and basketball and Jez to teach him football and they can both take him out on memorable day trips.
Close family, friends and my wife have all added something to my survival mix – a complete dynamic of care and support – all showing their bespoke and instinctive acts of love. I strongly believe how a family and friends pull together is vital in determining the likely outcome for the sufferer of a long-term health condition.
CF is an immense burden – too much at times for the sufferer to handle single-handily. But this burden can be shared and alleviated somewhat by one’s close family and friends coming together – in the right way and at the right times.
CF is and always will be part of my DNA. It’s me who has to relentlessly knuckle down to do my daily medication, physiotherapy and nebulisers every day… but I’m Definitely Not Alone (DNA).
This post is dedicated to Paul Harvey, a fellow hockey player with CF, who is recovering after a double lung transplant. All the best to you, your family and friends who hold you so dear…
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.
* 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