Trigger warning: child loss
Readers may find this content upsetting
It is easy to get trapped in out-of-date thinking, in defaulting to how things have always been done as if that’s the only way, especially in large, complex systems such as healthcare. It takes effort and a certain amount of courage to challenge old ways of thinking, but it must be done, or we are in danger of leaving preconceptions, taboos and prejudices unchecked.
Fortunately, in today’s world, many preconceptions are being eroded and replaced by more enlightened, empowering and fairer perspectives. Social Prescribing is a great example of this shift happening. It is creating opportunities to move conversations on, to take a broader, more holistic and more effective approach to health and care. It is often driven by stories that need to be heard, by new perspectives on what matters to people, by emotional connections that lead to change. There are now so many areas of life in general, and health in particular, where people are willing to open up to others about their stories, resulting in more opportunities for reflection and greater levels of empathy.
But there are some stories that still seem best left untold. Things that others can’t understand, or don’t want to engage with. Things that are best kept secret. We have a secret like this. We’re not the only ones – there are lots of people like us, who carry a secret like ours. It is not a story we are used to telling.
People generally like inspirational stories, or instructional stories, stories with a happy ending or at least a sense of redemption – I’ve never really been sure that our story has any of those things. There isn’t really a time and place where it seems like an appropriate thing to talk about, and I haven’t really seen the point in doing so. Very little good seems to come from telling people our story – all it does is cause us immense pain, and elicit lots of sympathy, neither of which we particularly want.
We don’t talk about it with other people because experience has taught us that telling others can be very difficult. It needs what I think is called a trigger warning, as it tends to hit people quite hard, leaving them a bit dumbstruck, or resorting to unhelpful clichés. There is not a lot people can say or do that makes them or us feel any better, and it certainly doesn’t change anything.
It is also very exposing. Telling people makes me vulnerable. When meeting new people, I don’t talk about it – in fact, I find ways to divert conversations in slightly unnatural ways if it starts to wander too close to something that will expose my vulnerability. It was immensely traumatic and intensely private, and they don’t need to know. It is a wound that never fully heals, and the less I poke around with it, the less it hurts. If I pick at it, like a scab it weeps. If I dig deep into it, it is revealed as the gaping loss it is, bringing spasms of agony to wreak through my body, a convulsing pain that overwhelms and engulfs my mind. Hence, I don’t talk about it much.
However, on the rare occasions that it is the right thing to do, I will talk about it. You might learn something. You will look at me in a different way. You won’t know what to say.
The key is often the wording of a simple question. If you ask me ‘How many children do you have?’, I will answer honestly. Four. But if you ask me ‘How many children have you had?’, I may also answer honestly. Five.
Our first child died of cancer in 1998, when he was 14 months old.
What is more, our child’s death was a choice – a choice that we made. The tumour in his brain was very rare, very aggressive and had a 100% mortality rate in children under 2, so we were given the choice – did we want to try an experimental treatment regime, or let nature take its course?
We chose not to treat.
We took him home and spent the summer with him, going on little trips, taking him to the park, having lots of friends round, we were surprised and delighted to celebrate his first birthday, and as the weather turned colder, as summer gave way to Autumn, the tumour grew back and he faded away, eventually slipping into unconsciousness. He died in my wife’s arms, in the house he was born in.
I’d like to say it was a peaceful moment, a relief, but it wasn’t of course. We were not at peace, or relieved. We were holding the body of our dead son, a son who had spent the last two weeks of his life in a morphine induced coma, a son whose body had been savaged by cancer, malnutrition and dehydration.
It was not a relief, or peaceful. It was brutal, it was revolting and in fact, it was pretty much the dictionary definition of trauma.
And just like the dictionary definition of trauma says, it leaves a mark on you. I don’t know if what I have qualifies as post-traumatic stress, but I wouldn’t be surprised. It has eased over time, but the sudden temper outbursts, the poor sleep, the intrusive thoughts, normally featuring horrendous injuries to one of my other children, all add up to take their toll.
This is the reality of living with the deep-seated emotional scars that I, and people like me, carry. It affects our behaviour, our outlook and our potential. On the occasions when we have sought help, it hasn’t really worked out that well. At one point I was assessed to see if I was a danger to my children, at another we were directed to a grief counsellor, both of which rather missed the point. I was traumatised, not grieving. I was in pain, not looking to inflict pain on others, least of all my children.
And that it is why I keep it secret. It serves no purpose other than to remind me of the horror of watching your child die. I have never thought it is a story that others want, or need, to hear. It’s not inspirational, or instructional, and it didn’t have a happy ending. It’s nobody’s business but ours and no real good can come from telling our story…
…but perhaps that’s because that’s not really the end of the story? Perhaps, there are things that people would want to hear, or lessons that could be learnt. Perhaps I am stuck in old ways of thinking myself, certain as I have been that our story doesn’t serve much purpose. If I look at it again, from a different perspective – from, for example, a Social Prescribing perspective – maybe I would think differently. Maybe I could help others.
After all, I have never been medicated, I haven’t had therapy and I’m certainly not living in denial – but life carried on and I feel I have lived a very fulfilling life since then. I have acceptance that it happened and find comfort in the fact that it did not break us. I think that counts as recovery.
I was lucky in many ways. I had all the privileges that being a straight, white, able-bodied, happily married man in the educated middle classes brings. I had everything in my favour and shouldn’t have anything to moan about. Maybe it was just this that meant I could find a way of living with and accepting my personal trauma, and that is that. Or are there things I have done along the way that helped, and if so, could others benefit from knowing that?
I started by reading about what trauma does to you. It turns out the fear, pain and raw emotion of trauma sits in the old ‘mammalian’ part of the brain. For trauma survivors, these sensations are so powerful that the newer, more ‘human’ parts of our brain physically & chemically distances itself from them. Survivors protect themselves from their pain by literally changing their brain – but the trauma which is no longer acknowledged is still there, showing itself in uncontrollable & unpleasant ways.
What recent therapeutic approaches to trauma show is that by practicing creating opportunities to face strong emotions, unrelated to their trauma, survivors can change their brains again – they can learn to surface, confront and deal with the pain that their body feels, but which their minds deny. They can reconnect their mind with their emotions.
I think this ‘reconnection’ is something that happened to me a lot. I think it happened when I climbed. I have been a climber for a long time and although I didn’t know why, I have always felt it helped me manage my emotions – I now believe it helped me recover.
Firstly, because climbing is great exercise. Everyone knows that exercise is good for your mental health – endorphins, released when exercising, trigger positive feelings in an almost addictive way. Secondly, because it is increasingly clear that simply being outside, in beautiful natural environments, is good for your mood – breathing fresh air helps release serotonin, another feel-good brain chemical.
But to me, there was something much more fundamental going on with my mood and my mind when I climbed, something much more significant than getting a bit of a sweat on while looking at a nice view. Why do I choose to go these places, and what do I get out of it? It forced me to reflect hard on what it feels like to climb and why I do it.
When you’re in seemingly dangerous places, your body will feel fear, but you realise it is possible to use the mind to rationalise and overcome the fear. You learn that you are in control, not your emotions.
You also feel vulnerable. Acknowledging your vulnerability is actually the thing that keeps you safe. It is okay to be vulnerable out there, even important. You need to be honest about your vulnerability to survive.
You also find out that sometimes you don’t make it to the top, that there is no happy ending, and that’s okay. Life doesn’t always go your way, but that doesn’t mean life stops. Success is often the thing right in front of you, not a distant goal.
I have started to think that connecting the physical experience of climbing, to the emotional journey it creates, to the mental strength that it results in, literally exercises the neural pathways that allows me to live more healthily with, and even recover from, trauma. Climbing, both the planning and the actual doing of it, helps me practise lots of things that are needed to aid this process, things like responding to change, facing uncertainty and overcoming doubt.
It has made me think that the Social Prescribing model could create a new type of care for trauma survivors, one that equips them with the means and the ability to confront, immerse in and overcome the strong emotions that climbing creates, leading to improved outcomes in mental health and aiding trauma recovery.
I’m not an optimist, or particularly spiritual. I’m not philosophical. I’m a realist. People have terrible things happen to them – you can’t stop that. But you can stop good things happening. Fear, resentment or anger will stop good things happening. Feeling sad, isolated or hopeless will do as well. But those are things that can change. I believe that for those who are like me, who carry a secret like mine, it could create a bit of hope.
Hope that they won’t always feel sad, or angry, or isolated. Hope they won’t always be stuck in old and damaging ways of existing. Hope that there are things they can do that will help.
Hope that their life can be about not just about what happened to them, but also about what happens next.
If you have been affected by this article you can seek support here:
Together for Short Lives
Child Death Helpline