Yearly Archives: 2014

I don’t normally do review posts like this, but today I somehow feel it’s necessary.

I’m tempted to say ‘good riddance’ to 2014; the last 12 months (plus a few days at the back end of 2013) have possible been the worst of my life, filled with such depths of sadness as they were, not to mention other rocky patches I stumbled through during their course.

But that’s not the nature of this blog and it’s not my nature either. I may be wallowing in sadness a little longer than I usually might, but I’m not one to rail against the world. I don’t believe in a world with no redeeming features and I’ve continued to try to find life’s little silver linings, to smile through it all.

In that spirit:

This year I lost 4 friends:

Kerry was a friend I first filmed in 2012 who told her story so eloquently and beautifully it even made me tear up, which is tough for someone who has seen and lived through so many stories of life with CF.

Anders was a distant but no less sturdy rock for me when I needed support. Twice, when I was having a rough patch and knowing that I had zero music knowledge, Anders made me a mix tape (on CD) and sent it down for me to stick on to keep me tuned into the world around me.

Emily was the friend who was always one step ahead of me.

And Eugenie was someone who seemed never to ask anything of anyone in life, to offer nothing but her heartfelt support, love and affection to everyone she came into contact with, and to find out today that she’s no longer with us is almost too much for me to bear.

This year I saw my niece turn 1:

Isla is everything I could have dreamt of in a new niece, the perfect addition to the growing cadre of nieces and nephews that light up our life. And she’s the niece I never thought I’d see and, without the kindness of one person and their family, I never would have.

This year I lost my way:

Halfway through the year, after losing three friends in 4 months (Gareth, Kerry and Anders), I didn’t know what to do with myself and everything seemed a bit pointless. But having my wife at my side to guide and support me, not to mention my wonderful colleagues at World Vision, I got through the tough times and found my way again. Unfortunately for my colleagues (or fortunately, depending on your point of view…), it would be elsewhere.

This year I found a new home:

When I saw a job description looking for a master storyteller to join the charity whose work over the last 50 years is largely responsible for me being here today, it felt utterly perfect. How could I not put my name forward for it? Again, thanks to encouragement and support from my wonderful wife, I applied, was interviewed and was given the job. What a way to give back to the people who’ve helped me be here and what a way to help pave the way to a brighter future for all those going through what I went through.

This year I learned how to make mistakes (and recover from them):

K and I upped sticks to move to St Albans to be closer to the CF Trust office in Bromley and make the commute a little easier. We found a lovely little flat at the top of the high street and roped in a cohort of friends and family members to help us shift all our stuff from our 4-bed house to our 2-bed flat.

And then we realised how big a mistake we had made. We were miserable, and making each other miserable. So we reversed our decision. Quickly and quietly we gathered our things and five weeks after we’d moved out, we took ourselves back to our lovely Wellingborough dwelling and I discovered that a longer commute is worth the time if you come back to a place that feels like home.

This year I learned that grief is all-consuming, but that it will pass:

From moment to moment I’m am still struck by enormous pangs of pain in missing Gareth, who was such a big part of our lives and whom we loved so much. And as each death this year has started to mount up it’s become harder and harder to take.

But as I sit here and hope upon hope that 2015 will be kinder to us and to our friends and to our family than 2013 and 2014 have been, I recognise that all these things are fleeting. More importantly, all these things, these experiences, are what make us who we are, are what make me who I am and are what make each and every moment we share with the people we love most the most important moments of our lives.

Hug your loved ones close in 2015, and give thanks for the time we have with them. And if they are no longer here to hug, raise a glass and a smile for the light they brought, not for the shadow that remains in their wake.

Lots of things will be written and spoken of Emily Assen (neé Thackray) in the next few days and weeks. She died yesterday after a second double-lung transplant proved too much for her body to withstand.

Emily’s unique ability – using unique in its literal sense, as I’ve never come across anyone with the same gift – was to make everyone she ever came into contact with feel like they were the most important in her world.

There are dozens of people who will be grieving the loss of a best friend today, because that’s who she was to everyone: selflessly sharing her love and compassion for the world with all she brushed against and, in the process, making everyone she touched feel special, feel like they mattered. She made a difference.

Equally, everyone who knew her will have their own ‘Emily’ with whom they spent time, shared laughs and cried when it was warranted. We all new a different friend who gave different things to our lives.

My Emily came into my life in the early days of the internet when I first discovered the Cystic Fibrosis Trust forums: she was already there and dispensing support and advice as needed. I struck up a friendship with her and with some of the other frequent posters and we supported each other through tough times of losing friends that we were terribly close to. It seems nothing much changes in a life with CF.

When she set up the organ donation campaign (now charity), Live Life Then Give Life, with her great friend Emma after the loss of more than one mutual friend on the waiting list for transplant, I offered to help in any way I could. I ended up being one of the first Trustees of the charity and being part of the team that one Best Campaign Team at the 2008 Charity Times Awards and Best New Charity the following year.

My Emily was always one step ahead of me on my CF journey. She was the first of us to start needing supplementary oxygen. She was the first to use a wheelchair. She was the first to have a lung collapse. She was the first to be assessed for transplant and, thank God, the first to receive it. She was the first to be married after her transplant, and the first to have serious complications. Now, she’s the first of the two of us to go.

What became indelibly unique, thought, was that everything she went through became a source of help and information for others. She never hid away from anything and always used her own lived experience to make it even a tiny bit easier for others going through it. She supported me as I took every step and misstep she took a few months further down the line.

The day I finally got my transplant call I remember sending her a message and getting an immediate phone call back.

“Take some paracetamol now,” she told me.

I wasn’t sure if I should, but she countered immediately, “The stress of the situation might raise your temp and if it does they won’t go ahead. Take two paracetamol now and it will drop your temp if you have one, but it won’t mask anything more serious that could be a real contraindication.”

I took them. I passed the tests. I got new lungs.

The story that sums up Emily, though, came through on my Facebook last night from one of my oldest friends and was one that I’d never heard before. This stands as testament not only to her willingness to help and support anyone and everyone, but also to be humble and quiet in going about it.

“She was so wonderful when you got your call, patiently, calmly keeping me informed about the stages, what to expect, what were the good signs, what to worry about & what to cheer.

“All the way through your surgery and recovery she stayed in touch, answered my many emails and sent me random messages asking how I was doing – she had volunteered herself to essentially be my support as I didn’t want to bother your parents or K too much with my need for information and updates. It meant such a lot to me and I was incredibly appreciative knowing she was a message away to answer a question or calm a worry.”

That’s Emily: friendly, warm, generous and patient. And not just my Emily, that’s everyone’s Emily.

Em, you will be missed far more than most of us can understand, but we remain ever grateful for the joy and happiness your brought to our lives, for the connections and friendships you forged that will last long into the future, and for the blessing of finally understanding one of my favourite quotes:

“She was a line of poetry in a world of prose.”
Polly Toynbee

If you follow me on Twitter, you can’t have helped but notice that it’s been a very busy week, with no less than five pieces of media telling my story during transplant week. (Links to follow).

Transplant week is always a special week for me, for very obvious reasons. It’s a chance to harp on about the miracle of organ donation and for me to tell my story to inspire people to have difficult conversations with their family and sign the Organ Donor Register to record their wishes.

It’s also a challenging week. It forces my life into a spotlight, not just in the media, but in my own head as well.

Talking about the difference between pre- to post-transplant me shows just how far I’ve come, but also challenges my perception of my life and what I’ve achieved. It challenges my understanding of the world I live in and it challenges the decisions I’ve made in the years since my transplant.

And here’s what it all comes down to:

I feel a pressure to “succeed” and make a difference that my donor would be proud of.

The funny thing is that I know this is silly. I know there’s no reason for me to feel this way, or for it to leave me feeling inadequate if I haven’t achieved what I feel is “success”. Yet it’s a feeling I can’t shake.

As one very good friend said to me during the week when I voiced this to her, “Your donor will just be happy they’ve allowed you to still be here, regardless of what you’re doing and how successful you are.”

The problem I face is that I don’t know that for sure. Yes, it makes sense. Yes, I can see the logic. But I’ve never met and will never be able to meet my donor, so I don’t know what they think.

That’s why I’ve been so busy this week. That’s why I remain so willing to talk so openly about my transplant journey. That’s why I’ll always take advantage of transplant week. Because it’s the one chance I get to demonstrate just how much this all means to me.

To that end, I’ll be sharing links to the various media hits I had this week here on the blog in the next few days. If you’ve heard them already, thanks for listening. If not, perhaps download them and have a listen in the car or when you’re out for a walk. The two radio interviews are the most in-depth I’ve ever done and in both of them I share some thoughts and stories I’ve never shared publicly before.

And, of course, if you haven’t already, please sign the Organ Donor Register.

This week is National Organ Donor week, or Transplant Week if you’d rather the shorter version.

It’s a massive week for me, a chance to talk about the thing that I am most passionate about and, hopefully, to inspire people to sign the Organ Donor Register.

It’s only Monday morning, but already I’ve had three pieces go out: a short news piece on BBC Radio Northampton, a 3-minute news piece on ITV Anglia and a 15-minute chat on BBC Three Counties Radio yesterday morning.

Whenever I speak about cystic fibrosis or organ donation I know people listen. I’m blessed with both a compelling story and the means to express it. I’m not very good at identifying my own strengths, but I know communication is definitely one of them.

However well I speak or write, though, I know that most of my friends have heard this stuff a million times. Most people I’m connected to on Facebook have been with me throughout my whole journey and know exactly how I feel.

Despite this saturation, and to my surprise, they are still listening to everything I share. I’ve had more engagement on Twitter and Facebook in the last 24-48 hours than I’ve had for the last couple of weeks combined.

Why? Because I’m speaking with passion.

To listen to someone speaking with passion is to hear their words pour from their heart like a dam bursting to give way to the floods behind it. Regardless of whether you agree, more often than not you’ll listen to their arguments because of the force of feeling behind them.

Passion is honest. It’s almost impossible to fake passion, which is why politicians so frequently fall foul of the trap; they try so hard to sound passionate, but the effort always shows and comes across as a lack of sincerity at best, straight-up emotional manipulation at worst.

There is a rawness, a freshness, an authenticity to someone who speaks with passion that can’t be bought or faked. It’s naturally compelling and our ears tune into it without any conscious thought on our part.

I don’t like to bombard people with calls-to-action to sign the Organ Donor Register and talk to their family about their potential death. I recognise that it’s not a subject people much want to discuss. But weeks like this give me a chance to speak with passion about the thing I care most deeply about. So I’m grabbing this opportunity with both hands and I’ll be shouting from the rooftops all week.

You can help by simply sharing this post, or the organ donation link, with your friends so they understand just how important it is for us to stop three people every day dying while they wait for a transplant that doesn’t come in time.

(By the way, have you signed the Organ Donor Register? Do it now!)

I have a habit with my work to wait until everything is “just right” before putting it out there for people to see.

For some, this strive for perfection underpins everything they do; they simply won’t let something out of their grasp and let it free into the world without knowing it’s 100% right.

Here’s what I’ve learned: there’s no such thing.

There’s no perfect version of a book, or a blog post.

There’s no perfect cut of a film.

There’s no perfect design for a website or platform.

There’s no perfect time to release something.

There’s no perfect circumstance in which to do anything.

If we wait for perfect, nothing will ever happen. Even when we think we’ve got something just right, how many times have you looked back over something from the past and wondered what on earth you thought was so perfect about it? Haircuts, for example…

The true nature of perfection is constant evolution. But recognising we’ll never make something perfect, all we can do is vow to never believe we’re done.

Some of the world’s most famous and talented people do this every day:

Footballers train daily to improve their skills and keep themselves at the peak of fitness to be better able to play “the perfect game”.

Photographers who take “perfect” images are still always exploring, always playing, always looking for the next thing to make their work even better.

The startup world loves the word ‘iteration’ because they know being open to shifting their ideals of their product or service based on what the customer wants is the closest thing to perfection their product will get. Perfection is achieved perhaps for one fleeting moment before the next iteration is needed and started.

Into this same bracket I put myself: I’ve iterated this blog many times. And I’ve been working for the last three months to perfect it. But I can’t.

So this “soft relaunch”, if you will, is my acceptance of a lack of perfection. It’s my choice not to wait for perfect, but to acknowledge it never will be and instead get out of my own way to write more, share my experiences and get back to the root of this blog: smiling just once every day.

What are you waiting to perfect? Stop waiting, start doing.

The best of intentions doesn’t always get the best of results. Despite being earnestly intent on blogging more this year, I haven’t updated the site since the very first day of 2014.

I do plan on coming back and as I type I’m working on a new and (I think) exciting format for this blog, what it stands for and what I want it to mean in the future.

Until then, maybe it’s best for you just to skim through the archives…

Today is the first day of the first month of the Year of Positive Change and my first target:

Exercise Daily

I want to be fitter, to be healthier and to be able to really challenge myself physically in 2014 and beyond.

Twice now I’ve trained for the 3 Peaks Challenge and had to cancel the trip at the last minute and each time I’ve settled into my old patterns of not doing any exercise and letting myself slip back.

At the end of 2013, I promised Gareth that I would run a 10k in his honour with his sister and brother, I intend to stick to that promise. Can there be any great motivation?

Beyond that, I just want to escape this nagging feeling that I’m not doing enough with the new life I’ve been given.

Six years ago when I was first recovering from my transplant I promised myself that I’d make the most of these lungs and really push myself, but I haven’t.

Broken promises are the worst things in the world, but when they are to ourselves they are so easy to overlook. [Tweet this]

This month, then, I will be doing some form of exercise every single day. I’ve started a gym programme on Mondays, Wednesdays and Fridays, and I’ll be looking to add some yoga and dynamic stretching in on the off-days, with maybe a good walk on a Sunday. Here’s what I hope it will achieve:

• I’ll be fitter.
• I’ll be happier (I’m told daily exercise is great for perking you up.
• I’ll be more grateful for the ability to get up and do things, which so many people aren’t able to do.
• I’ll feel like I’ve made a really positive start to the year, tackling one of the things I struggle most with first.

I’d love you to join me if you’d care to. It doesn’t have to be as drastic as I’m taking on, you could perhaps commit to taking a short walk each day – once round the block in the evening, say – but just commit to getting yourself off the sofa, out from behind the desk or away from the kitchen for just a few minutes each day.

I’ll be publishing weekly updates here, so feel free to keep me in check (or motivated with your own story in the comments) or connect with me on Twitter or Google+.

Will you be undertaking a short piece of daily exercise? Commit to it in the comments below.