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.
A series of posts looking at famous Bible people and how they’re a bit more like us than we may imagine.
Think of the man who wrote a good part of the New Testament (Paul) and the first words that come to mind probably aren’t “man whose prayer didn’t get answered”. There are good many other phrases that might come to your mind: genius, great writer, leader, certain, inspired, ethical, apostle, convert, road to Damascus, church-planter, missionary. Or maybe there are other, less-complementary words that come to your mind (of which the equally Biblical ‘hard to understand’ may be the mildest). Love him or hate him, he’s one of the single most influential people in the history of the Christian faith. It’s apparent that God used him to communicate some eternal truths and to help us understand what the story of Jesus’ life and death and resurrection as told in the 4 gospels means for us.
So what sort of person was he? What, when pressed, defined him in his own eyes and, most importantly, in God’s eyes? We get a fascinating insight into that in the letter we now call 2 Corinthians. It’s markedly different to the CV’s of the influencers in the early 21st-century:
I’ve worked much harder, been jailed more often, beaten up more times than I can count, and at death’s door time after time. I’ve been flogged five times with the Jews’ thirty-nine lashes, beaten by Roman rods three times, pummeled with rocks once. I’ve been shipwrecked three times, and immersed in the open sea for a night and a day. In hard traveling year in and year out, I’ve had to ford rivers, fend off robbers, struggle with friends, struggle with foes. I’ve been at risk in the city, at risk in the country, endangered by desert sun and sea storm, and betrayed by those I thought were my brothers. I’ve known drudgery and hard labor, many a long and lonely night without sleep, many a missed meal, blasted by the cold, naked to the weather.
And that’s not the half of it, when you throw in the daily pressures and anxieties of all the churches. When someone gets to the end of his rope, I feel the desperation in my bones. When someone is duped into sin, an angry fire burns in my gut.
If I have to “brag” about myself, I’ll brag about the humiliations that make me like Jesus
(2 Corinthians 11:23-33, The Message)
We want our leaders to be in control; Paul admits to anxiety.
We expect leaders to have good relationships; Paul’s had arguments with friends.
We expect moral cleanliness from those in charge; Paul openly admits to plenty of time in prison and to being on the receiving end of brutal punishments.
We want to follow people characterised by strong competence; Paul invites us to follow him because he’s weak and he’s suffered.
He boasts about the things that have humiliated him and led to suffering because it’s in them that he finds himself to be similar to Jesus. Jesus, so anxious that He sweat drops of blood; feared God had abandoned Him; was betrayed and let down by close friends; was punished by the powers-that-be.
That’s not all. For Paul, there was more.
I was given the gift of a handicap to keep me in constant touch with my limitations. Satan’s angel did his best to get me down; what he in fact did was push me to my knees. No danger then of walking around high and mighty! At first I didn’t think of it as a gift, and begged God to remove it. Three times I did that, and then he told me,
My grace is enough; it’s all you need.
My strength comes into its own in your weakness.
(2 Corinthians 12:7-9, The Message)
Paul, so close to God that Jesus speaks directly to him; Paul, so inspired by God that 2,000 years we still read what he wrote to keep us going; Paul, writer of some of the most influential words in human history; this Paul has a problem he can’t shake, that God won’t take away no matter how much he pleads. It’s probably a physical problem – one serious enough to make him ‘beg’ for relief.
I know how that feels. I’ve been in pain every day for more than 16 years. On bad days, I’m told by people who know about these things, my levels of pain are worse than those of childbirth. I’ve begged for it be removed, and so have others on my behalf, many more than 3 times. Newsflash: I’m not as close to God as St. Paul.
It limits me. I’m also clinically depressed and anxious; I recently ended a church business meeting by breaking down in tears. I’m limited by mind and my body.
That, says Paul, is the point.
God’s fond of those who struggle, close to those in pain. Because when you’re weak, His strength is seen through you; His power is made apparent because mine is stripped away.
Got it all together? Sorted? Ducks in a row? That could be your biggest problem.
Painfully aware of limitations and dis-ability? Wrestling with weakness? Desperate for relief? God’s especially close to you.
Also in this series:
These posts are based on a series of sermons.
Chronic illnesses constantly ask the sufferer to make choices which inevitably seem like lose-lose. If you live with chronic illness, you know that well. If you don’t, then even at your most well-intentioned you live with ignorance as to what people like with on a daily basis. We are not brave, really. I certainly don’t feel brave today.
Today I woke up in pain. Ankylosing Spondylitis is a rare, potentially degenerative, unpredictable arthritic condition which affects primarily the spine but also other joints. It’s normal for me to wake up in pain, but today the levels were higher than usual and, as usual, for no discernible reason. Tight hamstrings, pain all the way through my back and neck. About 6/10 on my scale; on a normal person’s (apparently AS sufferers by necessity develop an unusually high tolerance for pain) it’s probably around 8/10. Apparently what I rank as north of 10/10 is worse than an especially painful childbirth.
I had planned to go to the gym today – I’ve put on weight and need to keep up the momentum on my new regime. Going to the gym will probably loosen me up a bit , but high pain brings with it a willpower melting emotional low. I lie in bed before the alarm sounds (pain always wakes me up) and wrestle with the trip to the gym. I eventually give in and doze fitfully through waves of pain and comfort myself that I’ve already been to the gym twice this week and it’s only Wednesday.
I slowly work my way into the day at my desk. The pain doesn’t go anywhere, and I’m tired. Pain is tiring, and I’m wrestling my mood. A while into the morning and it’s felt fairly productive. My concentration is all over the place, though. Pain does that. I have some top-up pain killers for days like this. If I take them, the pain will ebb somewhat and in theory I should be able to work more. However pain killers would mean more drowsiness on top of my tiredness. Stick or twist? I stick, for the time being. The rheumatologist has told me that topping up with the pain killers could affect my liver.
It would be good for me and the dogs out for a walk later, but the very thought of controlling them on the lead ratchets the pain still further. I put off the decision for now. I feel like I’ve lived a whole day of choices and pain and wrestling. I’m emotionally and physically shot. It’s only 12:30 p.m. Suddenly even the thought of what to have for lunch utterly overwhelms me.
Brave? Most certainly not.
I’ve been absent from blogging for a while because I’ve been ill. As previously recorded, I have an ongoing chronic disease. This particular disease is a product, as I understand it, of a misfiring of my immune system. So to treat that disease, medication must override the part of my immune-system that is misfiring.
If you’re anything like me, you’ll spot a possible problem at this point. Immune systems are important. They protect us. So if you override part of your immune system, it follows that you’re more likely to get sick. So to combat that I take other supplements, boosters and the like. Usually this is enough; I also get an annual ‘flu jab; and in the case of something exceptional like swine ‘flu, I get two innoculations; and anybody who lives in the same house as me gets one too. Not for their sake; for mine. All this carries the label of being ‘immune-compromised’, which sounds like something out of a spy story and possibly quite cool, until you actually experience it.
This is how it plays out. I experience chronic pain from my ‘regular’ disease; I’m also vulnerable to infection in ways other people aren’t. If I’m going to get something like the ‘flu, I will get the ‘flu with a style and intensity beyond the experience of most; and I’ll be left more tired than most for longer than most after the worst of the symptoms have abated because it takes my immune system, such as it is, a while to recover.
About three or so weeks ago now, the ‘flu hit me hard – for the first time in years. I croaked my way through a Sunday service and spent the rest of the day lying on the sofa. I woke up the next morning without a voice; as well as the whole package of ‘flu symptoms. I didn’t think people actually lost their voice until it happened to me. I was unable to speak at all for about 3 days; and it was a real effort for another 4 days or so. I ended up missing two Sundays due to the ‘flu; now I am more or less back in action, though I’m still at reduced capacity due to a pretty much permanent sense of exhaustion.
I bloody hate feeling like this. I’m quite a good patient with my ongoing chronic illness; to be honest, you have to be a good patient and just get on with it as best you can if you’re to have any sort of life. Add a a bonus ‘flu to the package? Not so much. I moaned (sometimes inaudibly, I grant you), I complained, I grumbled and generally moped. At least I got to read and listen to and watch stuff. Still I grumbled, though. I wanted to work, but couldn’t. I still can’t do so; not at full capacity, anyway. Yesterday I slept for two hours in the afternoon; at least my job allows me to shape my time to do that, but still that’s not me. If I ever sleep during the day, it tends to be for 20 minutes; not 120.
Which brings me to man ‘flu. You know what that is. It’s the long-standing, culturally accepted way of rolling out the old cliché that men tend to fake illnesses, or are bad patients, or exaggerate symptoms.
Let me make this very clear. I don’t fake, I don’t exaggerate. If I have a bad day of my regular disease, the level of pain is (I’m told by a female rheumatologist) in excess of childbirth. If I do anything on a bad day, I underplay it so you don’t get sick of me ‘complaining’ about a level of pain most people either never experience or if they do, it’s in exchange for a new life at the end of it. So ‘jokes’ about man ‘flu really, really bother me. They bother me because they load guilt on to me when I have to rest but start to feel an unconscious pressure to get on with life so I don’t look like a fake. It pushes me work (ineffectually) when I should really rest. I don’t fake; I don’t exaggerate. I don’t really know anyone, female or male who does. I know such pressure should be resisted, but when you’re ill your defences are low and your capacity to resist is reduced.
Just be kind, won’t you? Assume the best, not the worst, please. The gap between genders grows moment by moment, assumption by assumption. Be better than that, please. Especially when I’m ill.
I’m sick of taking tablets and injecting myself.
I’m sick of doctor’s appointments.
I’m sick of pain.
I’m sick of being dependent.
I’m sick of being limited.
I’m sick of having ‘to be brave’ when in reality I’m not.
I’m sick of wondering if it will get better or not.
I’m sick of the ideas people have about my sickness when they know nothing about it.
I’m sick of looking at people with no major health problems and feeling jealous.
I’m sick and I am strong.
I’m sick and I accept that.
I’m sick of being lonely in crowds.
I’m sick and I laugh about it.
I’m sick of the well-meaning people who get it badly wrong.
I’m sick of explaining that there’s much I can do, actually.
I’m sick, and with that come many gifts and insights otherwise unavailable to me.
I’m sick and I need you.
I’m sick and I know what it does to me.
I’m sick and I get scared.
I’m sick and that changes what I care about.
I’m sick and I have perspective.
I’m sick and that leads me to great thankfulness.
I’m sick which means I am accustomed to waiting.
I’m sick and there are days I feel helpless.
I’m sick and that costs money.
I’m sick and that brings the judgements of others with it.
I’m sick which means I have lost much.
I’m sick and sometimes I don’t want to talk about it.
I’m sick and the reactions of others causes me concern.
I’m sick and sometimes I act as if I’m not.
I’m sick which means I grieve.