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.

It’s fair to say that 2013 has not been a great year for us at Lewington Towers. There has been a pretty significant break in my blogging and, in many ways, our lives over the last 12 months.

I’m not going to go into great detail here (for reasons which will become apparent), but there has been altogether too much illness, downsides and death this year.

But, as I reflect on the previous 365 days I realise I have a huge amount to be grateful for despite everything that’s happened.

My wife and I survived what I hope may be one of the toughest years of our marriage just six months into it; certainly it’s been the toughest year of our relationship together to far, all 8 years of it. We’re stronger now than we ever have been before.

My newest niece was born. Not being a parent myself, I can only imagine the feeling to hold your own child in your arms, but beyond that there can be little else that can compare to the joy of holding your brother or sister’s baby in your arms and feeling such an overwhelming sense of love and protection for them.

In a very mundane way, we are still in our loving, warm home – we can pay our bills, we can afford some little luxuries and, if we were to compare ourselves with others around the world, we are extremely privileged.

We are surrounded by friends and family that love us, who support us and who would stop at nothing to protect us if they could.

Starting fresh

Both K and I sincerely hope that 2014 is going to be a better year for us, but regardless, I’ve realised how important this blog (and its ideas) are to me.

I stopped blogging for long periods in 2013 because I couldn’t see the light – I couldn’t find things to smile about, couldn’t see the positives in the mire of terrible events, couldn’t enjoy life for the gift it was.

So this year I’m resolutely turning over a new leaf. Inspired by Leo Babauta’s Year of Living Without I’ve decided to instigate A Year of Positive Change.

Positive Change

I wanted to focus on positive change because that’s the best way – for me at least – to stay motivated towards doing something good to change things in my life.

Too much of the things people vow to do around the turn of the year is about not doing things, about subtracting from your life the things that you enjoy in the name of some sense of “proper-ness” and a desire to be better.

My theory? We get better by becoming more than we are now, not less. Sure, there are things that giving up will make better. If you give up food, you’ll certainly grow thinner, but who wants to live a life without food?

This year will be about finding positive changes I can make in my life and, each month, choosing just one thing to work on to try to form a lasting habit that will take me forward into the many successful years to come.

Tomorrow I’ll launch my first monthly challenge and I’d love for you to join in. There is no reward or prize, nor any punishment for not achieving what we set out to do, but I hope that the sheer force of the positive energy and willpower will help to shape 12 months of positive change that will get me closer to the happiness I want to feel and the person I want to be.

And if I take anyone else along for the ride with me, so much the better.

Leave me a comment and let me know what one positive change you’d like to make in 2014. Positive means no “stopping”, no “less”, no “fewer”.

How do we mourn the loss of a friend?

How do we explain the inexplicable?

Grief’s many forms come to us unexplained, uncontrolled and unblemished – pure, raw and all-encompassing.

My instinct is to write, to share my experience, perhaps in the vain hope that catharsis will come through the words on the screen.

But now as I sit and write, as I try to find the words, wait for them to flow, they refuse to come.

You died on Boxing Day. I’ve been friends with your family through your sister since before my transplant when she set up an organ donation campaign at Durham University and included me in it.

I’ve shared the peaks and troughs of life with all of you over the last seven years of friendship – through the highs of getting married to the lows of losing loved ones – and your death is one of the toughest.

I try to smile. I try to remember the wonderful times we shared, like our mini-tour of Hadrian’s Wall this summer. I try to remember the laughs, the fun, the frivolity.

But grief doesn’t always give us what we want.

Instead I’m left thinking of the hole you’re leaving in your family, a family who have had to endure too much. A family of such belief and faith and certainty that I don’t understand the trials they are being sent. A family of such closeness, such togetherness, that losing another member of it is too much for anyone to contemplate.

At the same time, though, it’s hard not to feel a sense of wonderful gratitude.

I’m grateful to have known you, sir. I’m grateful to have known your wit, your views, your humour, your idiosyncrasies, the broadest of smiles, the most contemplative of minds. I’m grateful to have had chance to discuss the good and bad bits of new Doctor Who episodes as they were broadcast, grateful to have understood your passions and your passionate dislikes and everything that made you the man I knew.

Most of all, I’m grateful to the wonderful donor and their family who, when all else was falling in around them, took the bravest decision of all to grant the gift of life to a then-14-year-old boy whose heart was failing. I’m grateful that your family had nine more years to enjoy their son and brother. I’m grateful that you lived to meet your baby brother, who also left us too soon. I’m grateful that you were given enough time for me to meet you, to get to know you and to consider you a friend.

There is no escaping the sadness that your death brings, the black cloud of disbelieving grief that just wants you to drop a sarcastic comment on my Facebook status update one more time. There is no escaping the fear, the knowledge of the inevitability of something similar happening to me, that comes with transplant-related deaths. There is no escaping the reality that we’ll never hear you laugh again.

But there is no escaping the gratitude we all feel to have had our lives blessed by your presence.

And that’s what I’m going to cling to.

Gareth, sir, look after Theo, keep an eye on us and lie peacefully in the knowledge that you made our lives all the better for knowing you. Thank you.

I’ve written before about trying mindfulness. I’m not always very good at it, but this Christmas I want to make more of an effort to get it right.

It’s been a busy and difficult year for us, 2013. Not one I’d care to remember to fondly or regularly.

Don’t get me wrong, lots of lovely things have happened, but lots of really quite horrible things have happened, too. After 2012, when I turned 30, celebrated 5 years post-transplant and got married, this year was always likely to be less exciting/brilliant, but I don’t think either of us expected it to be quite so rough.

The sum of the year is that I’ve not spent enough time with the people I love, for various reasons. Top of that list of people is my amazing wife, who has had to put up with far too much and, if I’m honest, with far too little support from me.

So this next two weeks, while I’m off work and without hundreds of things to think about, I’m going to concentrate on being mindful and present in everything I do with K.

Not only that, but I want to try to do the same with all of my family; to enjoy their company, to let annoyances flow over me and to keep focused on the gratitude I feel for everything they give me in my life &emdash; and I’m not (just) talking about Christmas presents.

Next week I’ll be sharing my plans for 2014 and how you can join in if you’d like. Until then, have a wonderful Christmas and remember to keep that gratitude in mind through everything you do.

PS – if you’re still stuck for Christmas presents, you could always give someone you love my book. (US link here)

I want to restart, reinvigorate, reignite and generally revamp this blog.

I want to make it look nicer and easier to read on your phone.

I want to create a plan for what I talk about and how I communicate my thoughts and ideas.

I have even been considering porting all of this over onto a different site.

I want to do all of this, and that’s my biggest mistake. I’m waiting for things to be perfect, for everything to fall into place before I commit to anything. That, dear readers is never going to happen.

Just get going

“You learn how to pursue great things when your footing is unsure, when the shores are unsteady and the road is far away, when the very next step you plant may indeed be more difficult than the last.” AJ Leon, The Pursuit of Everything

I’ve got to know AJ a little over recent months, through interactions on Twitter, through signing up for his conference next year and through reading his work. I highly recommend the latter to everyone.

Reading AJ’s post in my inbox today made me realise that, like walking on a beach, my footing was unsure. Rather than using that as an excuse not to move forward with anything, I need to use it as the reason to do it.

I’ve tried and failed at so many things over the last 6 years since my transplant and I’m often disappointed in how easily I give up. I don’t stop to praise myself for starting.

Without a beginning, no story can exist. If I want to live the life I want, to help people achieve more, to communicate ideas that resonate with people, simply to write, then I have to keep starting, keep chasing and keep going.

As soon as I stop, I over-think. When I over-think I paralyse myself. Paralysis is an artist’s worst enemy.

So this is me, pushing “Go”. This is me getting started (again). This is me saying things don’t have to be perfect and spot-on and just right before I get things out there. They just have to be.

What are you sitting on and waiting to be perfect?