One day last week I learnt of the sad passing of my long-term CF friend from the chronic illness cystic fibrosis (CF)*…
Sean Bell, from Manchester, was my main CF mentor. He was 47 years old and I learnt much from his extra experience of battling the illness and having a wife and children. As he had a new set of lungs seven years ago, this was something that I was keen to understand should my own health take me in that direction. He was someone I greatly admired and looked up to for surviving so long and being born in an era where the outlook for CFers would have been particularly bleak.
Over the last decade we’d exchanged regular emails and had annual phone call catch ups. It was clear from the start that we shared a similar dark and wry sense of humour while enjoying the same lust for life. We also had the same appreciation of our health situation and corresponding rich perspective for our family, friends and an uncanny ability to relish the happy times.
I had my concerns that something might not be right as I’d not had any replies from a spate of recent emails to Sean. Silence not being so golden you might say. Then one day I decided to ring his home number, even crossing my fingers as the number was being dialled, hoping that I’d hear Sean on the other end… but Lesley his wife answered.
After a short introduction and once Lesley realised who I was, she gently explained that Sean had peacefully passed away a few days before, following complications with his transplanted lungs. It was a surreal conversation but what struck me the most was Lesley’s utter compassion, bravery and un-dying love for a man who had been so determined to stoically defy the medical odds.
I’ve said it before and I’ll say it again, the partners of adults with CF and other life-threatening illnesses are special people indeed.
The last seven years meant more precious time for Sean with Lesley and his lovely daughters Scarlett and India. I can only imagine that they cherished every single moment of the time that those donated lungs gave them together. One anecdote that Lesley shared really impacted me. Post-transplant, when Sean could again do the school pick-ups for his girls, it was the first time they had seen him break into a run, such was the debilitating state of his lungs before the operation.
As I finished the phone call with Lesley, the heart-breaking news I’d just received hit me like a ton of bricks. Tears flowed down my cheeks and steamed up my glasses. I sent a burred text to my wife Katie with the news and how crestfallen I felt and she replied equally perturbed. We both understood the resonance of this news. Although 10 miles apart in London we were both crying for someone we’d never met and felt desperately upset for his wife and children.
In that instance, Katie and I knew that one day it could be our family and friends crying at the news of my passing from CF.
The news made me reflect on the strange dynamic that pervades for most people with CF who due to the risk of cross-infection are not supposed to physically meet each other. These are friendships with people you never actually meet but instinctively know and understand what makes them tick – their daily medical regime, the pure highs, the deflating lows, the importance of family support, the need to make every second count and the rich life perspective gained by defying the odds of survival every day of their lives.
It also served as a reminder that there is some risk in getting to know other CFers. I have been keen to learn from the experiences and survival strategies of other CF adults, so in my experience it’s a risk worth taking.
One of Sean’s many legacies was to encourage and inspire me to keep me up the good fight, try to have my own child, enjoy being a parent once Felix was in my life and place another brick in my fall of fortitude that keeps me battling this incessant condition each and every day. He touched my heart, my soul and helped to expand my future life goals.
I wrote most of this blog while listening to the album ‘Destroyed’ by Moby, which was exactly how I felt on hearing the news about Sean. One track from that album, ‘Lie down in darkness’, felt most apt.
But over the last week, it has renewed by determination that more needs to be done to find treatments and a cure for this disease so that good guys like Sean are not lost in their prime. This is typified by one of the campaign slogans of the UK CF Trust in their 50th year anniversary: ‘CF – a fight we must win!’
Goodbye Sean, breathe easy my friend. You are well loved, sadly missed and made a huge difference to many people (me included).
I’ll finally get to meet you one day…
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.
Tim Wotton (CF author)
View my recent article in the Daily Express article
* 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.