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.