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.

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.

I’m sick

I’m sick.

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.

Inspired by 35 things you may not know about my invisible illness