Bored

I’ve been hearing the complaint ‘I’m bored‘ quite a bit recently. I suspect it’s because I’m still relatively new to this parenting business; give me a couple of years and I’ll be, well, bored of hearing it and I’ll stop noticing it. I haven’t found a skilful retort to it yet, and I doubt I ever will.

The truth is that I spend much of my life bored. Not in terms of needing entertainment or occupation; between my job, family life, TV, movies, books, dogs and video games there’s plenty of stuff for me to do.

No. I’m bored of something that’s always there.

I’m 42 and I’ve been in pain for over 16 years. Illness. Pain. Sickness. I’m bored of it. I’m bored of the audible crunch of bones in my neck and spine when I turn my head on a cold morning; I’m bored of medication every day; I’m bored of explaining my condition; I’m bored of having to spend so much money fighting it; I’m bored of doctor’s appointments; I’m bored of not being able to play football; I’m bored of being sore after walking, standing, sitting or lying for more than an hour (all told I do a lot of walking, standing, sitting or lying for more than an hour); I’m bored of answering the question ‘does your illness define you?’, a question only ever asked by people with no chronic illness themselves; I’m bored of it affecting my sex ‘life’; I’m bored of not a single Christian ever having had a ‘word of knowledge’ about Ankylosing Spondylitis because they’ve probably never heard of it and certainly can’t spell it (and yes, that includes people from Bethel as well as your personal favourite healing ministry); I’m bored of well-meaning but ignorant advice; I’m bored of the guilt at not doing the physio I should be doing; I’m bored of doing the physio I should be doing; I’m bored of missing out; I’m bored of being tired just because I’m ill; I’m bored of my lowered immune system; I’m bored of people telling me about their ‘bad back’ because they think they relate; I’m bored of people thinking they can’t talk to me about their stuff if they know I’m sore; I’m bored of people asking ‘how are you’ and not really wanting the answer; I’m bored of the voiced and unvoiced judgements … if only you’d do xxx then you’d be better, you are a bit overweight, after all; I’m bored of having to opt out of moving chairs and tables because it will hurt and worrying about what people think of me for opting out; I’m bored of listening to that worry and helping move the table and then being in pain for a day; I’m bored of choosing between playing with the kids or being in pain later.

And here’s a truth. Others are bored of all that too. It’s part of the curse of chronic illness. Sometimes I wish I had an acute illness. Cancer, or something else that has an end point for better or worse. When people first find out about your chronic illness, they’re sometimes interested. They ask questions which you answer wearily because they show interest and you think they might want to help or ‘walk with you’. And they do, for a while. They pray with and for you. Maybe they help with something that you can’t do. But then, mostly, often, they get bored. They never say it, of course; they may not even be aware of it themselves. But at some point it becomes clear that this disease isn’t going away, that it isn’t my fault, that the prayers aren’t going to be answered like that. One time a couple of people offered to sit and pray with me regularly for my AS. I was thrilled. We met twice. So people back off; they don’t walk with me and my wife. They check in every now on. But they haven’t got time for me and my illness. A small handful have. But people back off. They get bored of my need, my story, my pain. People get bored just walking with me, with no apparent end to the journey.

I’m bored of that. And deeply, pathetically, tearfully, grateful for those who do just keep walking at my pace. Which is slow.

Oh so fucking slow.