Today is my 17th second birthday: it’s been 17 years since I took my last breath with the lungs I was born with.

Every dawn brings a new day I wouldn’t have had were it not for my donor – and were it not for their family, who chose in their grief to give others a second chance that their parent, child, sibling didn’t get. I feel honoured every day and I hope I continue to honour them in turn.

However, I’d be lying if I didn’t say that there’s something about today that feels different and I’m not sure why it’s this particular year. All of the usual thoughts and feelings of joy, gratitude and celebration are there, strong as ever, but there is something else layered on top: I miss people.

When we held Laughter For Life II seven years ago, we worked out that I’d lost about 20 friends, a rough average of one every two years of my life. After my friend Kirstie died, I simply disconnected from the CF and transplant community; I couldn’t do it any more, it hurt too much. And for the first time since I was a teenager more than five years passed without losing anyone.

Grief behaves in mysterious ways. Like an ocean, it can sit calm and placid then twist without warning and begin to roll and roil, then thunder and crash, terrible and terrifying. Moments after you think you’re fine, you suddenly find yourself drowning again.

That’s where I am today, being buffeted by the malevolent seas of grief. I miss my friends.

I miss getting random texts from Emily about whatever scheme she was about to rope me into. I miss logging onto social media hoping to see comments and posts from the Jesses or Tor. I miss jumping into treatment discussions with Toria on the message boards back when they were polite and supportive. I miss getting CDs in the post from Anders as he tried gamely to further my musical education. I miss all the hours of laughter as our collective humour blackened in the face of unimaginable, unstoppable forces rising against us.

Today’s a day for celebration. I’m still able to enjoy it for the wonder it is. I’m still here and I’m here because of one person who I can never thank. Even when I feel unworthy, I’m honoured by the life they’ve given me.

But I also have a deep sadness in my soul that I can’t celebrate this with my friends. And I’m reminded of the lyrics from Les Miserables:

Oh my friends, my friends forgive me
That I live and you are gone.
There’s a grief that can’t be spoken,
There’s a pain goes on and on.

For years now (more than a decade, in fact), I’ve lived by the Smile Through It mantra. No matter what happens in life, you can always find one thing each day that makes you smile and hold on to that one thing as a sign that things will get better.

This week, for the first time in a long time, that mantra no longer reigns. For the first time in a long time, I’m not OK.

And this is something I need to share because  in this world of heavily filtered, idealised lives that we all share online it’s too easy for me to pretend everything’s OK and that I’m coping and that I can still smile. I’ve been through mental health battles before, both with my own head and those of several of my loved ones, and it’s hypocritical of me to advocate the need to talk about the difficult times if I’m not prepared to do it myself.

I need to share this because I need people to realise that it’s OK to not be OK sometimes.

Empty chairs at empty tables

On Friday, K and I woke up at 5am to drive to Exeter for Kirstie’s funeral, which was amazing. It was the very definition of a celebration of life and I’ve never had so much fun or laughed so much at a funeral in my life. It was everything Kirstie wanted and it was delivered beautifully.

Twelve hours after leaving the house in the morning, we were back home again, and as I sat on the sofa I realised something that made me crumble: I’m the last one.

More than a decade ago, as I was starting my journey towards transplant, in the days before Facebook, Twitter and other instant-connection platforms that we all now have, there was a band of merry lifers with CF doing what we could to jockey each other’s spirits, connecting on forums, via text message and in some cases living fully-retro and sending stuff to each other in the post. With stamps and everything.

As I sat on the sofa on Friday night, I realised that Kirstie was the last of that group for me. She was my last connection to that world of support, shared experience and shared hopes for the future. Every single one of that group I had stayed in touch with has gone.

In that moment, thinking of the fact that when things get tough in the future — which we all know they will for me some day — I won’t have anyone to turn to who’s been through it, I broke down.

So what happens now?

The next few days passed in a haze of the most intense grief I’ve felt for years. Nothing made me smile, nothing motivated me to get off the sofa, out of bed or out into the world. Things I’d always enjoyed became the last things I wanted to do.

On Monday I went into work and rapidly realised that my mind simply wasn’t there. So I did one of the hardest things I’ve done for a long time: I sat down with my boss and I said, “I’m not coping,” and I left the office (with his blessing) four days early for my Christmas break.

Things are getting better. I can smile again, I can laugh, I can hear all my friends getting angry with me and laughing at me for moping about. But the grief is still present, it’s still pervasive, intrusive, destructive. It comes in waves and I’m just learning to ride those waves.

I can see that things will get better. I know that I will recover, that I’ll feel joy again in the same way I did before. I know I’ll feel the desire to create memories in honour of that amazing group of people, rather than languish in the sadness of what’s been lost.

But right now, I’m not coping and I don’t know how to cope. I don’t know how to regulate the waves of grief, the bouts of sadness or the depths of despair that my brain sinks to at regular intervals.

Bring on tomorrow

What I do know is that everything I’m feeling right now is OK. That it’s OK to not be OK. That it’s important for me to talk about this, to share this, to be open, honest, vulnerable and fragile about it.

Because it’s not OK to hide it. It’s not OK to think I can just bravely plough through it and present my happy face to the world like nothing has happened. Because that helps no one: not me, not other people experiencing the same thing, not my friends and family who will think that everything’s fine.

Because losing this many friends, going to this many funerals, struggling to remember all of them and when they happened and what their faces looked like and sometimes even their names, is not OK. And will never be OK. And shouldn’t be OK.

A friend got a transplant call today. Still waiting to see if it goes ahead, but just the possibility of it has me smiling from ear to ear.

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!)

For those of you who just love a list, here’s what you need to know:

1. Write more.
2. Shoot more
3. Relax more.
4. Feel worthy

For those of you who want just a little more detail, read on.

Continue reading

This weekend, I celebrate four years of new life and give thanks to the person that has given me this chance.

Thanks to my transplant occurring after midnight, it means I can enjoy two totally separate days:

The first day is dedicated solely to my donor, to give thanks, pray for their family and think of what they have done for me and everyone in my life by being so selfless at the worst of times.

The next day can then be exclusively a day of celebration, a day when I can allow myself to rejoice in the gift I’ve been given and the things it’s allowed me to do.

Continue reading

Last week, I registered to take on the Brentwood Half Marathon and I’ll shortly be registering myself for the Edinburgh marathon in May. Yesterday, I sat and mapped out my training programme for the next 31 weeks to take me up to race day in Scotland’s second city, which is a scary-looking ramping up of mileage from Christmas onwards.

Like Tor1, over the next few weeks and months, I’ll be getting used to a new normality. Early rises, pre-dawn runs, strict training diet and abstinence from alcohol on all but the most special of occasions.

Any change in the normality we know and love2, it’s going to be tough. But the difficulty of the adaptations and motivations are a huge part of why I want to do this.

I want to challenge myself, I want to push myself, I want to really see what I can do with my new life, my new lungs and my second chance.

Continue reading

1. who’s doing brilliantly and even Tweeting herself now [↩]
2. or loath [↩]

Ever since my transplant, I’ve been telling myself I wanted to take on some major physical challenges, like climbing the 3 Peaks and running a marathon.

The 3 Peaks, as blog readers will know, has now been cancelled twice due to my own poor health, but running a marathon has never really crept onto my radar in any serious way.

At Hope and Abby’s Battlefront event on Saturday, I met a load of other transplant recipients, one of whom immediately challenged me to the Brentwood Half Marathon in March. Without really thinking, I agreed.

Not only that, but the CF Trust have places on the Edinburgh Marathon on May 29th, just 4 days after my 30th birthday. Seems serendipitous to me.

I’ve now committed myself to the mammoth task of learning how to run, getting fit enough to do it and staying motivated enough to not be daunted by the 26.2 miles ahead of me on the start line.

Sometimes all it takes is the smallest of pushes to drive us forward, to take that first small step towards a goal and start building the momentum we need to get us there.

What can you do today to step towards your ultimate goal?