At Death Café this week I was trying to explain what I mean when I say ‘I have a blinding perspective on life’.

I think of the day I became completely aware of my mortality; aged 8 years old, tidying my room dreaming of my perfect future career as a teacher and then came the moment of realisation that I never would - because I wasn’t ever going to live to adulthood. The sense of finality and hopelessness hitting me in one moment - I was inconsolable. I ran downstairs to mum for comfort and understanding, but aware of her own fragile heart I wouldn’t share my fear so instead just hunched over the kitchen table, face hidden in hands and hot tears.

I was born with a rare heart condition and have grown up breathless and living on what medicine will tell me is borrowed time. In my thirties now I realise I have broken through yearly milestones and expectations that were set for me – and I want to be clear, I am so grateful to still be here. The terrified 8 year old me is comforted to know she is still safe and with her family, but she has also not stopped thinking about her vulnerability since that day. That small girl was traumatised and this thirty-something is only just beginning to unravel her darkness. 

There is an attitude I have been becoming more aware of recently (from both the well and not-so-well communities) that as somebody who has faced her mortality so often I am expected to have a greater, happier and more positive perspective on my life. That I must know what truly matters to me, that I have a strong and confident zest for living, not sweating the small stuff, dwelling on bad days and endings, and ticking things off the bucket list for breakfast! 

But I don’t, not always. 

It’s fair to say I don’t particularly sweat the small stuff yes – but small is all relative. For years I have managed incapacitating anxiety at the thought of just leaving the house, and for four years of my late teens, I simply didn’t. Most weeks now, due to physical and mental exhaustion, I have someone help me clean my house, hang my laundry and make my bed – the folks also often drop me dinner round and will help me just about anything I ask of them. The shame I feel from needing help with these things gnaws just a little bit more away of me each time, and as for zest… is there another medication I can take for that?!

I think about dying everyday – and I have done since I was very young. As a true insomniac for life, I think about it most nights too. Often it makes me cry and every time it makes me feel as numb and voiceless as that eight year old girl at the kitchen table. I feel as though I have been expecting it for so long now that I’m mostly just confused as to why I am still here. It’s as if I’ve been standing in the middle of a motorway just expecting to be hit – just waiting for it, all these years. I am so ready for it that I am blinded to the true reason or purpose of being alive - everything that could be found not standing in the middle of the motorway. 

There is a poem called The Laughing Heart and the lines read “You can’t beat death but, You can beat death in life, sometimes, And the more often you learn to do it, the more light there will be.” 

I truly have learnt to beat death, surviving surgeries and symptoms that I probably wasn’t meant to. I know what it feels like to know that my life doesn’t belong to me – it came to me by utter magic and it will be taken away by utter fact. My life has been the bare bones of what makes a meaningful existence – I have breathed and I have survived and I am here. 

But I wake in the morning I don’t always know why I should get up – humdrum routine feels robotic to me, ever blinded by the clashing lights of survival and finality, it is all too easy to feel like I’m standing on that motorway again = just waiting, still waiting. 

There is a metaphor I often try to explain to people to help them understand what this all feels like for me. As an adult, the more I have experienced those mortal moments and the more I have unravelled the past, the more I feel as though I am seeing behind the stage curtains of life. If the world is a theatre and life is a magic show – I feel I am standing backstage. I can see the escape hatches and false doors, I know how the tricks work, I see the 2D perspective of painted scenery and true chaos of ‘putting on the show’. There isn’t a lot of magic for me anymore. I still get to be part of the experience, I still get to delight in the happy faces smiling in the stalls, I still get to hear the music and feel the rhythm of it all – but I still know I have to go home later, when the script ends and the lights go down. It’s very hard to not get to exist purely in the wonderment of the moment and it has always been very hard to know I won’t live forever.   

So as comfortable and open as I am to talking about death – I am yet to find the resolve I truly need. I’m not scared of the dying bit – if life has taught me one thing it is that we are all just science, alive and then not. But what we ultimately become are the memories we leave with others, what we leave behind in our wisdom, character and the stories we tell, and what purpose we had towards the greater good… - that is the bit that worries me most now. 

This blinding perspective comes with a heavy dose of having to be grateful for something that most take for granted. The weight of expectation I feel as a sick person who survives is overwhelming – to achieve and succeed and be humbled, good and stay grounded throughout. I am blinded by my awareness of my mortality and I don’t have the choice to shake it off – it has been my constant shadow. If I told you most days are just a fight against absolute apathy, would you still believe I’m actually a happy, interested, loved and loving being? Because I truly am. But I’m also still just that young girl, wildly unable to fathom that she is alive.