What’s normal anyway?

To those whom much has been given much will be expected – or something like that. It’s the Bible’s equivalent of the maxim directed at Spiderman: ‘with great power comes great responsibility.’ Much what, though?
To two learning disabilities, depression, anxiety, ankylosing spondylitis, I recently had added a diagnosis of AD(H)D. I but the ‘H’ in brackets because we’re not sure yet quite how much ‘h’ there is in me – the hyperactivity of Attention Deficit Hyperactivity Disorder. I’ve been on Ritalin, the medication of choice for this, for a couple of months now and the effect of it has been transformative. Is this what I’ve been missing out on all this time? Does everybody really have the capacity to sit down and just get on with stuff and not be fighting a permanent battle of distraction? I thought my magpie mind was symptomatic of the human condition, not a quirk of my brain.
There’s often a worry with treating this kind of thing that in doing so you lose some of the spark that makes someone unique, the fire of creativity, the fingerprint of the personality. I’m still learning about that, and how to make sure my whole family gets the benefit of the more focussed me – not just those who happen to come across my orbit in working hours. There’s much for me to learn, and yes I’ve been leant A Useful Book that does actually appear to be useful.
It’s quite a cocktail of diagnoses now. One would be more than enough, but there’s web of corollary, apparently between them. People with A.S. get depressed; people with depression get anxious. People with ADHD have learning disabilities. Chicken? Egg? Who knows.
None of them are going to kill me (I suppose you could argue that depression could, but you know what I mean); all of them are limiting, restricting in some way. It’s quite a collection of limits that I’m constantly learning to live within, to navigate around. Someone said to me that I now have a better idea of what makes me unique and special which is an interesting way to look at it. I’ve been living with me for a long time now and don’t think of me as unique – in my eyes, I’m normal. No matter if I’m normal or unique (or both), it feels as if this collection of defining characteristics is enough to be getting on with. If much is required of whom much is given, then what exactly is the much expected of me? Some days getting out of bed feels like an achievement (I spent 3 hours in a hospital waiting room for someone else yesterday; as a result of the dodgy chairs my A.S. is flaring which makes every moment of ‘normality’ today a victory); some days, filling out a form by hand is too much (thanks, dysgraphia!). Is the much that’s expected of me just to live, exist in a way that most people would recognise? Or is there more? What’s God’s call? To live within the limits, or transcend them like a bad afternoon tv-movie?
If only we all came with some sort of personalised users manual, telling how to get the best out of us. Everyone has to wrestle with these issues, of course – what am I for? It’s just that when you seem to have more quirks than others, it feels trickier to navigate.
We don’t come with user manuals, of course. We do come with an image, an imprint of a creator but that feels increasingly marred and chipped and cracked. And how do you speak of that when there’s so much about you that feels like it doesn’t bear the stamp of a wise and good creator? Is the image of God about perfection because God is perfect, or is it something more complex than that? There’s something there about our calling  – to steward creation on God’s behalf, and that creation presumably includes ourselves. So what does stewarding myself mean when the reflection is warped?
Questions, and few answers. Assuming that I now have the last of the diagnoses – at least for a while – maybe I can start to discern a way forward. Today this is less of dead-weight then it is a challenge to be surmounted, a puzzle to solve. It doesn’t oppress me today, but it does present these questions to which I struggle discern answers.
My only conclusion: normal is an illusion. There is both no such thing as normal; and also that normal is whatever your state is, wherever you habitually land. It’s not a target to be reached; if you see it that way it will always be out of reach. Instead it’s simply what you are.
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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.

Shadow Sides 2: Paul and the problem that won’t go away

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:

Moses – frustrated and angry at God’s people

These posts are based on a series of sermons.

Pain’s Pained Choices

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.

A lament for a diseased body, a question redefined … and maybe a calling

How annoying, how unsophisticated, how inconvenient to my intellectual pretensions when a cliché appears to have more than a grain of truth to it. In this instance I’m thinking of “A problem shared is a problem halved”. It’s not true of course, not in the literal sense. If I talk to you about a problem with money, it doesn’t mean that my debt is halved (unless you’re both very rich and also a very free giver). It does mean, if you listen well, that the secret has lost its power. It is in the light now, with someone I trust, and while the situation hasn’t objectively changed, it has done so in a subjective sense. It feels different.

I was diagnosed with a chronic disease in 2000, our first-second year of marriage. I had, it turns out, been experiencing the symptoms for a long time. Severe ‘shin splints’ whilst running or playing football weren’t, it turned out, shin splints. Some nights I would sleep well, many others I would be unable to sleep past 3 or 4 a.m. Not for the reason that newly-marrieds are supposed to lack sleep. Pain would wake me and keep me awake. With diagnosis came treatment, which has been a long journey. The journey is still ongoing. I reached a kind of equilibrium: accepting I had a disease around which my life needs to be centered, and being willing on days I felt able to, to ask for prayer for healing or strength or comfort. It’s a balancing act to be sure. Ironically I’ve never been very good with physical balance; but emotional, theological and spiritual balancing seems to come somewhat more naturally more to me.

In learning to orient life around this reality we (I include my wife in this, for it inevitably exacts a toll on her also) to a certain extent forget what it is we’re carrying. In integrating the joint possibilities of total remission or a wheelchair in later life there’s a strange forgetting that goes on. Until you meet someone else.

It wasn’t until I took a phone call a few weeks ago that I began to recall what we had been carrying. A mother who knew us through a church had found about my diagnosis and got in contact to say that her daughter also has the same disease and wondered if we’d like to all get together for dinner. We did. It was the first time we had deliberately and consciously sat down and chatted with others who had actual, real, personal experience of this evil but strangely relatively unknown disease. A week or so later I discovered a Facebook group for people with the disease.

These two experience, the one across a dinner table the other across the ‘virtual’ (but no less real) reality of social media have worked a strange magic on me. Suddenly there are safe places to ask questions about the disease and its implications which I had never allowed to bubble to the surface simply because there was nowhere safe enough to take them. Suddenly the story of my wife and myself was not just the story of the struggle of two people, but one caught up in a much bigger story in which many, many others are also writing their own chapters.

This experience of suddenly, 14 or so years after diagnosis, experiencing that we are not alone has been one of the removal of a burden I hadn’t even allowed myself to remember I was carrying. I can feel lightness on continually aching shoulders. My back and joints are, of course, no less pained. We’re not talking physical healing here. It’s deeper than that – the healing of no longer walking alone but having eyes opened and seeing there’s a crowd walking around us we’d never noticed before.

In laying that burden of solitariness down I’ve realised what it is that I am carrying. A lot. Pain (on a bad day the equivalent of a severe childbirth), fatigue (a symptom of the disease, the hardest to treat and the most emotionally debilitating), the endless medication, the financial cost, the things I am may not ever be able to do (I miss playing football and running), the dread of cold and wet weather, the  people who don’t believe you really have a problem, the people you think for reasons you can’t articulate don’t believe you, the passing it off as ‘a bad back’, the dread of sleeping somewhere with a bad mattress, the injections, feeling I need to move those chairs because there’s no one else to do it and living with resultant pain for days, the comments like “You’re young to have a back problem”, the well-meaning ham-fisted attempts to help about which you need to be polite, the way it affects intimate aspects of our lives, the taking a long journey at holiday’s beginning and end and living with resultant pain for days, the broken sleep for both of us, the needing to stretch and shift every hour or so … You want more? I could give you more. I typed that list without even thinking, and I could go on. I really could. Along with the relief of discovering we are not alone has come through the “Yes, I have that too” of other sufferers a kind of grieving at grievances foregone. If you need to get on, you don’t have time to mourn. So I’ll be catching up with some of that, I think.

It’s no coincidence that there’s a correlation between this disease and depression. Intense pain and daily fatigue is hard to bear. Trapped in that emotional spiral it’s tempting to ask a common question “Why me?”. “What have I done to have to bear this?”. “Who sinned? Me or my parents?”

As ever, Jesus’s answer isn’t so much an answer as it is a redefinition of the question. He’s whispering a question in my ear. What if, He gently lilts, this is a gift? A gift for being faithful with a few things so you’re being entrusted with much? What if this isn’t a punishment but a calling, asking me to teach with words and deeds and struggles how to seek healing alongside learning to live with what you have? Not that God wishes this on me. Far from it. He wants me to transcend it. To allow Him to show me and others that there’s more to pain than pain, more to a sufferer than a diagnosis, more suffering than just the suffering.

I don’t feel that I’ve been faithful, I can’t see where God may have got the idea that I can drink this cup. I don’t claim much for myself. Bad days can be bad indeed. Many parts of me feel broken and wounded. I’d love the cup to pass from me.

As the prophet sings, however, “Let the broken hearts stand as the price you’ve got to pay”.

In that lament there’s a kind of peace, and a path to healing.

Amen. Let it be to your servant as you will.

A question; an answer; a question

“What have you got to be depressed about?”

The question is a tenacious one.

What have I got to be depressed about?

I was born into one of the most privileged, advanced, secure societies in humanity’s history.

I now live in the world’s most economically unequal country; but it’s OK. I have a house, running water a toilet and health care. That puts me on the plus side of the inequality equation.

What have I got to be depressed about?

I know people who live in the middle of a gang war. I know people who have to walk through the region’s most crime-affected areas after dark in the rain to get to a toilet. A toilet of sorts, by the standards of most of us who will read this.

What have I got to be depressed about?

Unlike many in my community, I have never been threatened with being forcibly removed from the family home and relocated to places with inadequate drainage, exposed to the worst of the wind and the rain.

In the grip of a depressive episode I could, should, would feel guilty.

That makes sense, seems right, makes sense of the universe, doesn’t it?

If your leg is in plaster people ask why. You explain. They understand and make allowances.

I’ve never broken my leg, never had a part of my body visibly in plaster.

My chronic arthritic spinal condition is invisible. The reasons for it can be guessed at but not explained. The pain ebbs and flows like a temperamental tide.

I’ve been told I’m too young to have a ‘bad back’. That I need to see a chiropractor/exercise more/take different exercise/apply ice/apply heat/sleep more/sleep less/sleep on a harder bed/sleep on a softer bed … (delete as appropriate).

None of these will work. At least not as a fully as the advice-givers expect. I have the same condition as the captain of the Australian cricket team and a former English captain in the same sport. My symptoms are more advanced than both because I am older and a roll of the biological dice has deemed it thus.

The invisible needs explanation to be understood. If it can’t be understood, it must be curable in familiar ways. What works for me must work for you, surely. Ignorance leads to empty advice, kindly meant but building up over time to frustration and snapped responses.

It’s the same with depression. You can’t see it, so when you or someone you know is depressed you feel you must have a peg to hang it on, a circumstance to explain it, something that can be altered to alter the condition.

As with the arthritic pain, sometimes that may be true. A plane ride leads to 48 hours of pain; a circumstance of life can lead to a depressive episode. Counselling may help; changing something may help.

Sometimes. Sometimes not, though. Sometimes my back or neck or joint pain flares for no known biological reason. Sometimes I may experience an episode of depression for no other reason than fluctuation of chemicals I don’t understand.

The cruel trick is that in both cases I can feel guilty. I look at those in plaster, I look at my gender and age and think I should be able to do more than biology allows. So I feel guilty even if everyone around me is terribly nice and supportive. I look around at the need, pain and suffering of the city in which I live and I see people with real reasons to plough to a stop with depression, but they keep going. So I feel soft, guilty, pathetic. What have I got to be in pain about? What have I got to be depressed about?

And most of the time,  these are the questions of healing as well as doubt.

What have I got to be in pain about, depressed about?

Nothing. Sometimes, I just am in pain. I just am depressed. Others may understand or they may not. They may be helpful or they may make it worse, like the unsought advice.

But He knows. As mysteriously as I may have been made, He does know. He sees the heart and serotonin. He sees the mis-firing immune system causing waves of pain.

Did Jesus get ill? Did he feel sickness and pain creeping up on him; not on the cross … I mean bent over the carpenter’s bench, getting out of bed. Not from sin, just from existing. He did feel pain on the cross – does that mean he felt pain of the sort I do? Were the chemicals in his brain prone to unpredictability, or was He perfectly ordered, perfectly centered?

Did He? Does He? Unanswerable speculation or healthy questions?

I don’t know.

But it’s a good place to take the creeping guilt, the nagging sense I should be different.

What have I got to be depressed about. As a British comedian has recently said, you might as well ask “What have you got to have a broken leg for”.