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.

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.

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.

Last week I had a Nissen fundoplication. Exciting, huh?

It’s an operation that wraps the top bit of your stomach around the base of the oesophagus in order to prevent stomach acid (and anything else) from travelling the wrong way up and, potentially, creeping into the lungs where it can do a fair amount of damage.

That is to say it’s a fairly major operation to correct a potentially very serious problem.

I’m now the owner of five (count ’em) new holes in my stomach, taking my torso scar-count to 13 – awesome!

I also currently have scars healing both on the outside and also on the inside. Scars healing internally is the weirdest feeling every, because it hurts and is uncomfortable, but you can’t actually see any of what it is that’s hurting you. It is, quite, genuinely, one of the weirdest sensations that I’ve ever felt. I also have no idea how well (or badly) it’s healing and when the pain may subside.

So I’m now recovering at home and trying my best not to go out of my mind with boredom or let my brain get too over-excited with creativity while I’m largely unable to act on it.

Hopefully the process won’t take too long.

They say ignorance is bliss and, quite often, I’m inclined to agree.

Last Friday, we had the misfortune of attending the funeral of the baby boy of a very close friend of ours. He lived a matter of hours and the beautiful, emotional service proved – if there were ever any doubt – that there is little in life more powerfully heart-wrenching than the sight of a coffin that can be carried by one person.

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You would have thought after all these years, including two-and-a-half on the waiting list for my transplant, that I was used to the little bumps in the road that we all come across.

Turns out I’m not.

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Monday was a day of emotions like no other.

On the one hand, my friend and ally in many things, Tor, finally received the life-saving transplant she’s been waiting over 4 years for.  She can finally stop waiting and start the long journey into her new life.

No sooner had the emotions begun to settle than I heard that my friend and inspiration to many, Rachael, was preparing her final goodbyes, having been told by the doctor that there is nothing more they can do.

Tor always staggered me with her courage, fortitude and stubborn refusal to let CF beat her, reminding me in so many ways of the wonderful Jess, who we lost just days after her long-awaited transplant last year.  Tor has fought and battled and grappled with everything life has chosen to fling at her over the last four years – and throughout her life before that – and faced it with a characteristic smile, passion and commitment to not letting it get in the way.

Rachy has inspired many people, often first to lend support to people going through their own tough times, even as her transplant turned against her and her lungs deteriorated just 3 months after being given her second chance.  Always open, honest and available to all her friends, she humbles us all with her humility and love.

Rachy is all the more remarkable for having posted on her blog on Sunday a simple picture and the words

Rachael Wakefield, a life lived surrounded by love, with my second chance of life time is now precious, I’d like to thank all and everyone for your continued support, love to you all xxx Rachy xxx

Her quiet dignity in saying her goodbyes and inviting those of her friends and followers has seen her Facebook page deluged with outpourings of love and grief filled with the same passionate fervour as Tor’s has been with messages of excitement and prayers of hope.

What’s made this week so hard is that both of these women are at once utterly, beautifully unique, yet sadly not alone.

Every day we lose 3 people waiting for transplants in this country, mostly for the simple reason that not enough organs are available for transplant. If you haven’t already, you need to sign the organ donor register now.

It’s depressingly simple – taking less than 2 minutes and but a few clicks – but far too few people have done it.  No one like Tor should have to wait 4 years to be given a second chance at life.

Although we all know the risks going in to transplant, and although many of us have watched Rachy’s progress with a “There but for the grace of God go I” viewpoint, I know Rachy wouldn’t have traded a second of the post-transplant life had she known what lay in store.

I’ve always said I wanted six months of a better life post-transplant and I’d be happy. That a chance to play football with my Godsons, to run around in the garden, to do something without calculating how much oxygen I’d need to take would be enough for me.

I’ve been blessed with almost 4 years of new life and I thank my donor and their family for it every day. And I’m saddened every day for those who have never had the chance Rachael, or Tor, or I have had.

Don’t let life pass you by. Take it, seize it, make the very most of it. And please, once your done, pass your organs on.

IF you can keep your head when all about you
Are losing theirs and blaming it on you,
If you can trust yourself when all men doubt you,
But make allowance for their doubting too;
If you can wait and not be tired by waiting,
Or being lied about, don’t deal in lies,
Or being hated, don’t give way to hating,
And yet don’t look too good, nor talk too wise:

If you can dream – and not make dreams your master;
If you can think – and not make thoughts your aim;
If you can meet with Triumph and Disaster
And treat those two impostors just the same;
If you can bear to hear the truth you’ve spoken
Twisted by knaves to make a trap for fools,
Or watch the things you gave your life to, broken,
And stoop and build ’em up with worn-out tools:

If you can make one heap of all your winnings
And risk it on one turn of pitch-and-toss,
And lose, and start again at your beginnings
And never breathe a word about your loss;
If you can force your heart and nerve and sinew
To serve your turn long after they are gone,
And so hold on when there is nothing in you
Except the Will which says to them: ‘Hold on!’

If you can talk with crowds and keep your virtue,
‘ Or walk with Kings – nor lose the common touch,
if neither foes nor loving friends can hurt you,
If all men count with you, but none too much;
If you can fill the unforgiving minute
With sixty seconds’ worth of distance run,
Yours is the Earth and everything that’s in it,
And – which is more – you’ll be a Man, my son!

— Rudyard Kipling

Nothing sums up the way I’m feeling this morning better than this amazing poem. It’s probably my all-time favourite poem and I try every day to live my life by it.

Around 8am this morning, I anticipated being in the middle of deepest Wales, holed up in a little hotel not far from the foot of Snowdon, enjoying a celebratory breakfast with the 3 Peaks team and our nearest and dearest who were all coming out to join us.

Instead I woke at home, in my own bed, many hundreds of miles from where I wanted to be and feeling pretty rubbish about it, if I’m honest.

But, straight from my Life According To Kipling playbook, I’m off out for a celebratory breakfast with one of the team and their wife, both great friends who’ve been hugely supportive through the whole crazy rollercoaster of the last few weeks.

I am facing disaster and treating is just the same as I would have the triumph of completing the 3 Peaks. By celebrating I’m telling whatever higher power has deemed it necessary to prevent me completing it for the 2nd year in a row that I will not be bowed, I will not be cowed and I will never stop appreciating, loving and making the most of the gift I’ve been given. Wales or Wellingborough, it makes no difference to me.

If this post means anything to you, please share the sign-up link for the organ donor register for the trek – http://www.bit.ly/oli3peaks – by copying and pasting or sharing the link to this post. Help us make sure everyone who needs it gets the second chance I’ve had.

The plan was that by this time today1, I should have been arriving at a hotel in Scotland with the rest of the 3 Peaks team to prepare ourselves to tackle the immense 3 Peaks Challenge this weekend.

As we all know, other things happened to get in the way of that.

I’m absolutely gutted that I’m not going to be with Ben, Dave, Gary and my bro this weekend and that I’m not going to feel the immense sense of achievement (and exhaustion) on Sunday morning that I anticipated feeling. What makes it worse is the fact that this is now 2 years in a row when my health has got in the way of the very same challenge, with the very same team of people.

I’ve dealt for many years with the ups and downs of my health, but I’ve always managed to come out of things with a positive spin and so it is with this. Despite thinking that after transplant I wasn’t going to face these kinds of disappointment, I’m finally starting to hear the sense in my own words, spoken at almost every event I speak at: transplant is not a magic bullet, it’s simply exchanging one set of problems for another.

Don’t get me wrong, there is nothing – NOTHING – that I would change about my life right now. Transplant has saved and transformed my life and allowed me to be the person I always wanted (and believed) I could be. It’s allowed me to do all the things I’ve always wanted (and believed I could) do.

Events like the things that have been happening recently serve only to remind me that although I have downsides, so does everyone else. And thanks to my transplants, my troughs are a hell of a lot shallower than before – and than many other people deal with every day – and my peaks are a hell of a lot higher.

So it leaves me simply to suck it up and move right along – knowing in my heart of hearts that not going this weekend is the right decision and knowing that something else will soon come along to excite, entice and energise me as I move forward.

As a result of recent events, my life is going through a lot of changes, but they are all enormously exciting and I know that the best times of my life lay ahead. It’s time to knuckle down, get on with it and start taking my first steps forward to the brave new world to which I’m being introduced.

1. around 4.30pm as I write this [↩]

By now you’ll have read the other two posts and, possibly, seen my Tweets on the subject, too, but I’m home safe and sound after the craziness of the preceding weeks. Here’s what happened on the final day of investigations at the John Radcliffe in Oxford.

At 8.30am I was informed I’d be going to the angio theatre at around 11am to get everything sorted. 10 minutes later I was told it would be 9am instead. A rapid shower and gowning later, and I was riding my bed down the corridors to the radiology department, where I was met by an assortment of nurses, doctors and, I think, and anaesthetist (although she could have been just about anything).

The nurse checked out my groin and deemed that I’d not shaved well enough, so gave me a rapid going over with a dry razor, following which I was immediately sterilised with surgical alcohol. Yes, yes it did hurt. A lot.

Next came the ironically-painful local anaesthetic injections around the artery in my groin, followed by a frankly disconcertingly painful and uncomfortable pull, pushing, pressing and scratching as the doc inserted a fairly large tube into my artery and begin sliding the angio tube all the way in and up to the base of my neck.

Angiograms are very weird things, where you’re lying flat on your back with an X-Ray machine immediately above your face and one immediately to the side. As they inject the contract dye into you head to highlight the blood flow – and thus show any clots or aneurysms – you feel a hot rush that’s unlike anything you can describe beyond the feeling you get when you tense really hard to make yourself go red in the face.

What’s even weirder with a full angio, as opposed to the CT Angio I spoke about last time, is that they pinpoint very specific areas of your head, meaning you get the flushing sensation in extremely localised areas in your head. It’s incredibly bizarre and although not unpleasant, it’s not something I’d like to repeat to often. Or at all.

Back on the ward, I felt the familiar headache forming, but this time it was accompanied by a significant nausea as well and before long I was beside myself with pain and the urgent desire to throw up, coupled with being forced to lie flat on my back for 6 hours after the procedure to prevent the artery opening up again once it had clotted.

It turns out, although I was unaware of it at the time, mostly through sedative doses of Codeine and Tramadol for the pain, that I’d reacted to the dye they had used. Whereas the CTA had only cuased a headache, the far more significant doses of dye used in the full angio had resulted in a not-insignificant reaction on my part. The only good thing to come from it is that I don’t really remember a lot of it too clearly.

In the end, I improved quite rapidly once I was put on IV fluids and began to eat and drink again and I was discharged the following day with two conflicted reports on what had happened.

The registrar was of the belief that the whole thing had been caused by acute sinusitis and that the LP result had been a false-positive. This is a diagnosis I struggle with having seen my mum suffer through horrendous sinusitis in the past and not recognising a single symptom she described in myself. However, because it was the only thing that showed up on the CT1, I think the Reg decided to put it down to the visible.

The consultant, on the other hand, strongly believes that it had, indeed, been a sub-arachnoid haemorrhage, caused not by a ruptured aneurysm as is most common, but by a burst blood vessel that was so small it obliterated itself in the process, leaving no evidence whatsoever for the scans to pick up – something that happens in around 15% of SAH cases, she told me.  Her main evidence for this was based on the Xanthochromia found in the LP – a type of cell formed when red blood cells expire – which she doesn’t believe would have formed in the CSF through a badly-performed LP as it takes too long for the RBCs to break down to that stage.

So, essentially, I left the hospital with a clean bill of health, but feeling worse than when I did when I was transferred.  I’m now on an anti-convulsant drug to stop the blood vessels in my head spasming and causing more problems. I’m assured this is purely a precaution and the course only lasts 3 weeks, so I should be back to normal soon.

More on the changes that have been forced on my by this latest hospitalisation later in the week.

1. ie, that my sinuses were full of muck [↩]