One day

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.

One day
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.

Strange relationship
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
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.

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About Tim Wotton

I live with my lovely wife (Katie) and spirited nine-year old son (Felix) in Morden, Surrey; working full-time as an internal communications specialist in the Oil & Gas sector. I have played sport, particularly hockey, tennis all my life and now regularly go to the gym. Cystic fibrosis has been a huge factor in my life, but not one that overshadows it. I have always had great support from my loving family - parents Margaret and Douglas (RIP), elder brother Chris and my twin brother Jez. I have many rich life insights based on knowing I have a reduced life expectancy and battling against the odds for over 44 years. My eyes and heart have been opened by my health struggle. I feel empowered to share my life lessons to help anyone with health and life issues to overcome. My passions include Paul Smith clothes, dress shirts (believing that it's enlightening to dress like it's your last day on earth), Alfa Romeo cars, spicey food, Harlequins and England rugby, Southampton FC, Wimbledon village and common, Dorset, seascapes, sunsets and military history. I am available for public speaking on this subject matter and can be contacted via timwottonAThotmailDOTcom. I have written a book 'How have I cheated death?' based on my euphoric countdown year to 40 which was published in 2014 and won the 2015 'Best Achievement' Award at the UK People's Book Prize. It is available via e-book, audiobook and paperback at Amazon and to order from UK bookstores. Go to the relevant sites below or in the UK go to a WH SMITH, Waterstones or Foyles bookstore and give them my name, book title and this ISBN number (9781849637190). It’s also available via GARDNER’S, BERTRAM’S, AUSTINMACAULEY.COM, BLACKWELL’S, PLAY.COM, AMAZON.CO.UK AND AMAZON.COM
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18 Responses to One day

  1. stewart.jones@indida.co.za says:

    Sorry to hear your news mate… Keep strong and well bud! Take care
    Sent via my BlackBerry from Vodacom – let your email find you!

  2. sue kruk says:

    A big hug, Tim. I feel for you and Katie. And Sean’s family, of course. Will write later.

  3. Irene says:

    Sorry to read your friend passed away, Tim. I cannot think of anything else to say to stay strong, keep enjoying life everyday, and remember the good memories about Sean and his family.
    Big hug!

  4. tina kennedy says:

    Dear Tim

    I regularly read your stories and admire you for all you have done in your life.

    I was married for almost 22 years to my late husband Neville who died on his 51st birthday in 2011. He was a fighter not being diagnosed until he was two which was when the CF Trust was formed in Bromley in 1962. He worked all his life until he went on dialysis in 2009 but he unfortunately was not able to have a transplant as he had too many other problems. He had many surgeries but they were all just to cope with the symptoms and keep things at bay. I actually think that people with CF have an inner strength which they use to fight the disease and which makes them special people.

    He was under the care of about 18 different doctors for all different parts of his body towards the end. He was lucky really in that he worked at Birmingham Heartlands Hospital where he was also their very first patient way back in 1976 and the first patient of Dr David Stableforth who you may have heard of.

    I knew he had CF when we started going out with each other and courting. Then we lived together for a while before he finally asked me to marry him in 1989. He didn’t want to marry me at first because he was told that he wasn’t going to live long and he didn’t want me to be a young widow and he never wanted children as he didn’t want me to be left to bring up a child on my own should he die early. He could never have children so it would have meant adoption or fostering neither of which is wanted so I settled for a life without children, which was a sacrifice I made to be with the man of my dreams.

    The letters and cards that flooded in after he died in 2011 from both staff, colleagues, management and friends, showed me that he was seen by others in the same light as I saw him. He was a very gentle, kind and caring man who was always willing to listen and had a wonderful sense of humour and ability to cope with everything that was thrown at him. He had a wonderful brain and I used to joke that I would want it transplanted should he die as it would have been such a waste. He was the love of my life and I know I’ll never find another man like him. They “broke the mould” as they say when he was born.

    He died quickly having just completed a dialysis session; I had gone to collect him to take him to the theatre for his birthday the following day but he took ill and then went downhill quickly passing just over midnight to die on his birthday. It was a bad year for me because 10 days earlier I had lost my mother to cancer and I also lost my mothers two brothers, my uncles, as well that year to cancer along with three friends with CF.

    When the decision to not mix with others with CF happened Neville took the decision to ignore all the advice and we carried on our friendships and social life with others who had CF and luckily Nev and some of his friends managed to not get Cepacia however, we did lose a lot of friends to it. It was a cruel blow to the CF community which had grown up into a big group in Birmingham, calling ourselves the West Midlands Cystic Fibrosis Adults Association.

    I support the CF Ward at Heartlands by selling greeting cards and homemade cakes as and when I can and giving all the money I raise back to the ward for the benefit of the patients something I have been doing now for 28 years. I don’t take any money out for myself I give it all to the ward.

    You can read his story at the following website address:

    http://www.heartlandscf.org/index.php?id=208

    Thinking of you and your family and always have you in my mind wishing you a healthy life to enable you to continue your family and work life and be a husband and father despite fighting what is an awful disease. Let’s hope that it won’t be too long before they actually find a cure for it.

    Best wishes

    Tina Kennedy

    _____

    • Tim Wotton says:

      Dear Tina, I’m humbled by your kindly shared story – your husband does sound like one in a million and I think you are too! His life and endurance gives me a fighting chance to believe I can keep on defying the odds! I’ll read the full story.
      Best wishes
      Tim

  5. Juliet says:

    Dammit, should not have read that in the office :furiouslywipingtearsaway: I’m so sorry Tim; my heart breaks for you. 😦

  6. Paul Chrispin (London) says:

    Mate. That’s a different level. Bless you for keeping it going and prayers for your long life to come. Much love airfix

    Sent from my iPhone

  7. Tom says:

    Dear Tim

    I usually have a long comment on your blog, but words fail me as I cannot comprehend how bereft you must feel. I am sure your friend will breathe easily and I must say that Tina, above, is a saint for the fortitude she has shown amid her compassion for the love of her life.

    I hope I can be of help to someone one day, but in the meantime I stay strong for my grandson Nathan, who is in hospital now, but at 16 looking forward to many, many, adventures in life. May he breathe as easily as you. God bless in all you do, your stories continue to be inspirational to me and others. Lets hope that one day, CF and its illness will be vanquished and banished forever.

    Tom

  8. Joanna Macgovern says:

    So sad Timmy and I am so sorry you have lost a soul mate. My thoughts are with you and and Katie. Love Jo xx

  9. Kenny says:

    Hi Tim
    Sean was a close friend of mine . Where did we meet I asked for some information about being a parent. I received a letter in the mail from Sean shortly afterwards. Well would you believe it the very next week I was admitted to hospital (Wythenshawe C.F unit)and Sean was in the day room , I introduced myself to Sean and said thanks for the quick response. We sat and chatted over the next few days getting to know each other . Well 12 yrs on and we would meet every now and again for coffee and put the world right. When Sean had his t/p a year before me so we had even more to chat about and I have a son who is 11 this year even more to chat about. What you wrote about him was spot on he was a great friend. Kenny

    • Tim Wotton says:

      Hi Ken,
      I’m touched that you shared your tribute to Sean and how your bond with him was so helpful. Huge congrats on your on-going health post t/p and your son who I’m sure keeps your motivation going.
      Keep well and please feel free to stay in touch
      Tim

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