Simon

I might just say a little bit about my experience at this point because I was able bodied until about seven years ago, when I suddenly started feeling tired and needing to sleep during the day and ultimately being diagnosed with a rare autoimmune disease. And then, later, during the COVID pandemic, I got COVID and that made me even worse, so that I can’t work at all, and this blog that we’re doing is pretty much the limit of what I can do.

I got COVID during a sabbatical from work as a church Minister, during which I spent time praying and considering what I hoped to do with what I expected to be one last chapter of my working life. I made a list of the things I hoped to achieve in the next ten years and it started with 25 things and I narrowed it down to 5. I’ve subsequently had to cross out everything on that list. So I’ve had to go through that experience of… grief, really. Bereavement from a life that I expected to have.

I tend not to use the popular language about God deploying suffering and I think the famous verse that Paul uses is often misinterpreted to say that God makes us suffer, to make good things happen. I think Paul believes that God can bring good out of pretty much anything, which is a different thing to saying that God has made us suffer. I remember, in a time of really pretty much losing my faith, reading the book, The Dark Night of the Soul, and it wasn’t so much that I agreed with John of the Cross saying, ‘Oh well, God’s trying to teach you something by taking you into this Dark Night.’ It was just that I realised that so much part of my problem was the magical thinking that came with my charismatic upbringing: that if I did all the right things and I was a good boy and prayed and went to church, then good things should happen to me. I was able to let go of the question, ‘What have I done wrong to deserve this?’.

I’ve had a diagnosis of ME/CFS, Fibromyalgia and PTSD from my childhood, which was reactivated by some things that were happening in parallel to the illnesses I have. The prognosis for me is that I probably won’t get better. For me, that sense of, ‘Who am I if I can’t do all of the things?’ haunted me for a long time. When people ask you about who you are, you often reply by saying what you do. I’ve had to reconfigure my identity. Not that I was the world’s most activist person, but still, there’s a real question about what makes a person a person, and I think that really confronts disabled people because obviously at the fringes of academic ethics are the people who say disabled people are such a drain on society, we should just kill them. They don’t contribute anything. They just cost lots of money, so it’s better for society that they don’t exist.

I think that the great blessing for me, whether you call it luck or Providence, is that I took a sabbatical, during which time I was looking deeply into the issue of what makes a follower of Jesus. What’s a disciple, an apprentice, or whatever the best translation of that word that Jesus uses is. And I was already coming to the conclusion that at the heart of it is what you might call character or virtue. That what you do comes out of who you are.

An awful lot of our struggles are about trying to do the right thing, but not actually being able to. And so I was really fortunate that I was already beginning to reassess, because different kinds of Christianity are often about doing the right thing while avoiding doing the work of becoming a more Christlike person. I think that’s a particular problem in Protestantism. Because in a sense, the gospel has become a shortcut, you just need to pray this prayer and you’re in and you’re a disciple now. Now we need you to do these jobs and on one side of the church that’s about saving souls and on the other side of the church, it’s about social justice and political activism. But, as you know, in the Orthodox tradition, there’s this idea of theosis:  that the purpose of life is to become like God. I think I was really, really fortunate or blessed that I was already beginning to think those thoughts when all of the activism elements of my life were taken away from me by illness. I always used to love a new project. My weakness is I love starting things, but I’m not so good at finishing them. But now I just I say to people. ‘Well, I’m the project’. And some of my activist friends understand that, although I can see that they’re really really hoping it doesn’t happen to them.

Craig

We are very much talking about value and meaning, rather than achieving and doing. And I think to myself, isn’t that what the early monks did? Roy can correct us on this, but I certainly heard someone at one point say that a Bishop would say to a young man who wanted to become a monk to go into the desert or a cave. And when he’s found something that felt profound, he should return to the community and if what he’d found was genuine, people would begin to follow. It’s as simple as that, because they’ll see something in him which is authentic. If they don’t, then he hasn’t found anything others want to learn from.

It sounds to me is that’s the sort of thing that we’re talking about. Now, however we relate it to God or whatever doesn’t really matter. It’s got much more to do with the effect we have on people around us. Do people look at us and wonder? And we look at others and know there’s something we’ve got to learn from them because there’s something we appreciate in them.

Simon

I think one of the really interesting things that you’ve written in the introduction to this series is an acknowledgement that when we’re younger, we try to completely block out of our minds, not just mortality, but the slow decline of our abilities. Talking about living with limitations is not just about an obvious physical disability or an illness, but actually this is something that we will all experience, that mountain that we used to be able to climb will one day become an effort that really, really costs us. And then one day it will be an effort that we can no longer make. Life as we live it today is not often short and brutal, as it used to be. It’s quite long, and most of us will experience a slow and steady decline of both our physical and our mental abilities. Maybe people haven’t considered that very much, but the fact is that the core folk within the Collective are older. We are just beginning to peer over the rim of that and see it coming.

Craig

I think you’re right. And I certainly haven’t prepared for that very effectively thus far. I guess it’s another version of my pattern of denial – like denying I was disabled for so long. Right now I’m buying a house with the realisation that one day I might not be able to climb the stairs and might need a stair lift. I can’t fit one of those where I’m living now.

to be continued…

Do you have any comments or questions? You can contact us here: hello@northumbrian.org