Monthly Archives: December 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