How do we value a life?

Notes from an unproductive human

   This wasn’t the next substack piece I wanted to write. That article has been in its half finished state for quite a few months now. Sometimes I have been able to tinker around with a few sentences, bookmark an article for future reference . . . however the future still seems bleakly unproductive. The constant, often unbearable pain I have been in since mid April has narrowed my already pretty narrow world to a daily routine which I call ‘basic maintenance’, i.e. keeping myself alive. Making sure I eat enough, washing my hair regularly, trying to look vaguely human, resting on the sofa and making myself go for a daily walk have been the sum of my existence. That and sending the odd tweet, often taking on the persona of the Romy I want to be rather than the person I am. Oh and I mustn’t forget the daily search for some TV that is able to distract me. Any suggestions for that very welcome!

   It feels uncomfortable to admit all this in a place like substack. It’s a bit like breaking the understood etiquette of replying ‘fine/good/great’ when an acquaintance asks you how you are as they pass you on the street or in the supermarket. However the frustration/anxiety of not being able to provide my subscribers with more content has overridden the fear of abandoning the ‘suffering in silence virtue.’ Of course since what one might call ‘the advent of woke’ it’s become somewhat fashionable to have an affliction or grievance of some sort. Ideally one would be both oppressed due to an immutable characteristic and afflicted a disability. Except woke trendy hand ringing is hardly ever an expression of actual suffering. For starters real pain isn’t that social media friendly and those enduring it usually need all their energy just to survive. Of course I am able to write, both here and in tweet form. That already makes me more fortunate than many. It’s why I persevere with putting finger to computer keyboard, to alert people to those hidden and hurting in the shadows.

   Why is there so much suffering in the world? Why am I suffering so much? These must be the two most asked questions across the breadth and diversity of humanity across the ages. Yet they remain the most unanswered questions ever. Of course many have and continue to try making sense of it. As a Christian I am often met with fellow believers who attempt to provide answers for all I have been through, both in the past and in the ongoing present. I have encountered those who are like biblical Job’s friends and try to seek an explanation in my own behaviour or choices. Others try and reassure me that this is all somehow part of God’s plan for my life, for his greater glory. Somehow struggling with mental and physical illness since my early teens, enduring abuse, having to give up on my Oxford DPhil, not having a life partner or children at 42 and now chronic physical pain is all ‘the plan’. But as the book of Job shows us, suffering often has no reason or greater purpose. However it does show us that God can bring rays of light out of even the darkest situations. Job proves Satan wrong when he realises that his faith in God isn’t dependent on life’s blessings. Even when he is reduced to the lowest physical and mental state he is still able to trust in God’s ultimate goodness and mercy. I have to admit that I have seriously struggled with that! But recently I have realised that me wrestling with God means I haven’t cut myself off from him. However violent my fury and however long I go without prayer or reading the Bible the image of a pulverised body shaking with pain on a cross always keeps me from giving up on the relationship. God understands suffering even if I don’t understand why I must suffer.

   However it’s all very well to be reassured that God hasn’t abandoned you but those with lives narrowed by long term illness or disability often feel ostracised by humans. It’s not even just that people receiving benefits are viewed with suspicion as potential scroungers but society generally judges life in terms of a notion of ‘productivity’. What’s the point of a life that doesn’t add to GDP? Some may be shocked by that question and yet society is built around the idea that those who really  matter are ‘hard working families.’ Couples with kids, ideally owning their own home and with fulfilling work and ample socialising. Of course these help our society to function in a stable prosperous way. However I was especially shocked during the pandemic when many in my own ‘anti lockdown tribe’ seemed to think their lives lost all meaning because they lost their regular work and social lives. It’s the same sentiment when people say they wouldn’t want to live if they became paralysed or abort a baby with learning difficulties. The Channel Four series called ‘The Piano’ had members of the public play the piano at various train stations whilst secretly being observed and assessed by one of the world’s best pianists Lang Lang and pop star Mika. One person who wowed both those esteemed musical judges and gathering crowds was a young girl called Lucy who happened to be blind as well as have autism and other disabilities. She blew everyone away and moved many to tears, me included. However I was a little shocked when I read some comments on social media along the lines of ‘Lucy’s talent shows us how precious disabled people are.’ Would she be less precious without her amazing musical gift? Certainly not to her parents, those who love her and indeed to me.

It’s so easy for many people to go through life never really questioning the point of it all. Yet one of those rays of light that has come from my own dark struggles with illness and disability is that I do question and I don’t judge life the way many do. At the most basic level what is the value and purpose of a life? We must all answer that and be aware that how we do is fundamental to the type of people and society we are.