I can’t concentrate. I’ve not been able to concentrate for a good few weeks now. Every time I move, as well as sometimes when I don’t, several parts of my body hurt at once. Even lying down results in yelps of discomfort. Not fun.
A few months ago I pinned a joint in my shoulder from twisting around the wrong way. It was painful and expensive to ‘fix’. Now that the weather has turned damp and cold, the problem has come back. With it has come pretty constant back and core muscle spasms, shooting nerve pain up and down both of my legs, tight ankles, fairly fixed shoulders, neck pain, stomach spasms and nerve pain in my hips, along with ringing in my ears (a fun one, that) and increased shaking/tremors in my right hand and wrist. Secondary symptoms include grumpiness, irritability, even more tiredness than normal, feelings of weakness and failure as I’ve not been able to be the kind of person I want to be or, through the evil fallacy of comparing myself to others think I need to be, and a greatly increased appreciation of the joys of Netflix.
If you’ve seen me recently, whether at work or socially, you probably don’t know much of this, even though I have moaned about my shoulder a lot. I’m good at keeping going. I have an over-developed sense of duty I inherited from members of my family. I have a fear of failure a mile long, or longer, which tells me that if I admit to any or all of this, someone somewhere will say that I’m not ‘enough’, that I can’t do my job, which has become somewhat tied in with my identity and so on. I’m a vicar. Christmas is coming. It’s a busy time. All vicars say they’re busy, all the time, but from mid-November onwards, it’s actually legitimately true. My diary is pretty full for the next few weeks.
I know a lot of people who live in similar situations day by day. It’s easy to get so self-absorbed that I can think I’m the only one who experiences this kind of thing. As it’s the International Day of Disabled People today I thought I’d write a nuanced reflection on what it’s like to live with pain.
Having got the nuanced reflection out of the way, here are a few more thoughts.
I preach a lot about the perfect love of God casting out all fear. It came up yesterday as we were looking at Advent, a time of waiting and preparation for both remembering Jesus’s birth all those years ago and looking forward to the return he promised to make sometime in the future. Please, let it be soon. When we talk about things like fear, hope, trust and so on, it’s very easy for them to become glib, over-used statements, particularly in a society in which feeling pressurised for our faith is usually people daring to question us or call us out for some of the more blatant contradictions and hypocrisies which most people see very clearly in contemporary Christianity. It’s easy to be a Christian in the UK, or most of the Western World. It really is. Christianity was never designed as a project of societal governance. It really wasn’t. Christians are meant to serve, not be served. They are meant to trust and obey, not demand adherence. So, in this country, when the perfect love casts out fear, it means something quite different, I would imagine, to what it might mean to a Church family waiting for, expecting, pain, even death, for the simple reason of being known as a follower of Jesus. All things need to be held in perspective.
That said, here’s a fear I have as my body asserts itself: this pain won’t end before I die.
Here’s another one: how do I talk about joy and hope when I don’t really feel it myself?
Aging with my impairment scares me. It’s not been massive fun so far.
I’ve achieved a lot in my life. Disabled people do that. Loads of them. It’s not that noteworthy.
But it does feel like I’m fighting against a tide a lot of the time. The tide is mostly flowing in the sea of my own mind. I am very sensitive to any sense that people might view me as weaker, different. I hate disappointing people. Especially because of tiredness or impairment-related stuff. I hate it so much that I do it quite often. And so I hate that too. Whether anyone else disables me or not, I quite often disable myself. I think ‘you won’t be able to do that’, or ‘people like you don’t get to do things like that’. I really do. That’s part of my daily internal dialogue. I share it because however many ramps or lifts are put in to make the built environment more accessible, and I’m deeply appreciative of every single one, the biggest battle I face as someone who lives with pain and impairment is to change my own response to it, or allow God to change it for me. It’s been such a part of me and my life and experience that I don’t know what a ‘good’ response or attitude to it is anymore.
But I do know that it hurts. A lot more, recently.
On this International Day of Disabled People, I’m thinking of and praying for all those who aren’t able to moan about their experiences on the internet. All those who aren’t able to articulate requests for understanding, for opportunity. And I’m thankful to a God who considers disablement to be an abomination. A much greater abomination than some of the other things Christians shout about as abominations, of that I am certain. God does not disable people, so why do I, why do you? Why does your Church? Your denomination? Your workplace? If you see it, call it out, root it out, kill it at source.
A time is coming when there’ll be no more pain, no more fear, no more death, no more tears. It really is. It can’t come soon enough. While we wait for it to come, let’s bring closer the time when there is no more disability, no more discrimination. Let’s start with ourselves and choose not to disable or discriminate. And then let’s talk to the people we love, the organisations we work with and for, everyone we possibly can, to make it clear that although pain is a reality of life, there’s no need for it to by feeling like admitting to being in pain is a weakness that dare not speak its name.
I might get into trouble for this.