pain

pain

I woke up last night at about 3 AM in pain. Well, in more pain than normal. It’s been almost 6 years now that I have lived with permanent pain, a span of time I remembered this week when I spoke to a fellow quadriplegic who said he’s also been in pain since his injury, forty-three years ago (but still, he insists, he has had a great life). It seems an awfully long time. To greater or lesser degrees, it’s a problem for many people with a spinal-cord injury, and it sometimes worse for people whose damage is incomplete (as is mine). And I know we’re not alone.

Nerve pain is hard to describe. Imagine a sheet of finally grained sandpaper, which is rubbing lightly over your skin, pushing a little harder on your hands, feet, bottom, and groin. It burns, although it’s not excruciating. But it continues without pause for minutes, hours, days, years. It moves in waves, gentler in the morning, but increasing in intensity as the day wears on. If you’ve ever had a urinary tract infection, nerve pain in the bladder is like that desperate feeling that you need to urinate, but there is no relief and no antibiotic that will bring it to an end. In addition to nerve pain, some of us are also rewarded with stabbing aches (whether real or phantom, they feel concrete); imagine the ache of arthritis in your hip or back, but you can’t easily move to relieve it.

To write about pain is fraught. It is open to narcissism and overstatement – “look at me, look at my courage and resilience.” But there is nothing inspiring about dealing with pain. Mostly, we just do our best to ignore it – to pay attention to other things. And when it ratchets up, I’ve learned to curse; a grumbled sheet, folk (my voice recognition software is protecting your eyes and ears), which doesn’t really accomplish much, but sometimes you just need to let it out. It’s not spiritual, or courageous. It is a fact of life, but not the whole of it.

Pain is meant as a warning mechanism, but there is no warning in nerve pain. But it turned out that I should have listened to my body last night. The pump on my pressure mattress had switched off, I didn’t realise it, and my bed had gone flat. When my carers arrived in the morning, we discovered a pressure mark. Nothing substantial (I hope), but enough to keep me in bed. And that really gets my goat.

 

welcome home

home
a church called home

I love my church. Why? It’s vibrant, energising, and interesting. It has slightly strange “Techno” music which, if it’s not really my preferred style, at least enables me as an old man to pretend I’m young. But mostly I love it because it is welcoming and inclusive.

It just so happens to be the case that my pastor, Sebastian, has two disabilities (well, three, actually, but we probably should label my attendance as an impairment rather than a disability). He doesn’t make a big deal of them, but neither does he hide them. The first is a long-term mental illness and the second is a slight speech impediment – a stutter that probably goes unnoticed by most people (in mentioning it, I hope I haven’t condemned him by bringing it to the surface?)

It is unusual in this day and age for a pastor to admit to a mental illness. This is because leadership is generally understood as “leading from the front” – as modelling the perfection that Christianity is supposed to achieve. Even more challenging, society as a whole, and Christians in particular, are suspicious of people with mental illness. We think of them as unstable and dangerous, and Christians assume they must lack faith. So people living with the illness, and especially leaders, tend to keep their impairment hidden. Sebastien manages his illness by following the medicinal and psychological advice of his psychiatrist, and he is stable and doing well, although as anyone struggling with the mental illness knows, its challenges are never entirely absent, and life has its ups and downs. More to the point, he is entirely open before the congregation about his illness.

As to his stutter, it largely goes unnoticed, mostly because he devotes preparation time to ensuring his communication is free-flowing. Indeed, most people who have heard Sebastien speak would be surprised to hear that he struggles with a stutter, because he is an exceptional communicator. He has a natural stage presence, he is quick-witted and funny, and his messages are well constructed. But I love the fact that he is a great preacher and has a stutter. The best communicators are not robots, but people willing to be authentic.

So why am I telling you this?

For me to say someone has a disability is not to diminish them, but to pay them a compliment. But that is neither here nor there. I love my church, not because of Sebastian’s disabilities, but because he has allowed them to inform the way he relates to his congregation. Gone is the pretence of perfection that too often categorises church leadership. In its place is a radical inclusiveness that allows people to truly be themselves. And if the gospel means anything, it is that God loves people as they are, no strings attached, no perfection expected.

 

 

 

X-Men Apocalypse: a celebration of mutants, freaks, and crips

I’m certainly not the first disabled person to celebrate the X-Men franchise for its positive representation of disability. The central character, Xavier, is a wheelchair free cripple, and while I might wish that they’d used a disabled actor to play the part, I love that the moral centre of the series is a man whose spinal-cord injury fades into the background. We know he is disabled, but he’s never presented as being “trapped” in a wheelchair. And his message? People may think you’re a freak, and treat you like an outcast, but it doesn’t matter what you look like, what others think of you, we will accept you. Your mutation is not a curse but a gift.

I’ll admit that X-Men Apocalypse is not a plot and character driven masterpiece. And this particular film has its absurdities. Not the superpowered mutations; these are the ‘given’ of the X-Men universe that have to be embraced by anyone hoping to enjoy the films. The problem with this offering in the franchise was that whole cities are turned into rubble (and I’m not giving away any spoilers here, because this was apparent in the trailers, which showed our beloved Opera house disintegrating), but there’s not a dead body to be found. I mean, millions upon millions must have been killed as skyscrapers disintegrate and cities are destroyed, but there is nary a visual clue nor a second of dialogue that faces the horror of what slaughter on an unprecedented scale.

But, hey, this is a film about freaks and action, and I for one can look past the silliness to enjoy the visual effects and cheer the symbolism.

Let’s take the language, mutant. Just as “niggas,” “queers,” and “crips” have taken terms of derision and owned them as labels of pride, so does X-Men transform the disabling slanderer of “mutant” into an identity of power. It makes me want to claim the term for myself. Can I be a bad ass mutant too? What’s my superpower, I wonder? Does the ability to run over tossers with my chair count?

Importantly, the film resists the temptation to turn mutants into bland inspirations. There is something profoundly insightful in the fact that the mutants, who have all experienced horrible discrimination (a term too soft to capture what they have endured), respond in a variety of ways. Xavier may be the moral ideal, responding to hate with love, sympathy, and hope, but we understand the rage of Magneto, and can’t be sure that if we were in his place we would not respond as he did. I read a story recently by a paraplegic in New York who, after repeatedly being ignored and abused by taxi drivers who couldn’t be bothered dealing with his wheelchair, got into the habit of using a Swiss Army knife to puncture the tires of the cabbies who mistreated him (in Ruth O’Brien, Voices from the Edge). I’d like to think I’d respond as Xavier (or Jesus) would, but I’m not sure. In X-Men, Mutants and cripples are as strong, weak, moral, flawed, determined, and uncertain as the rest of us.

Finally, X-Men Apocalypse raises questions about gods and their actions, and while it doesn’t dig deep, it did get me thinking. If Apocalypse (the character) is the god of devastating authority and power, is Xavier a Christ figure, an alternate view of divine-like power, capable of knowing and controlling thought, but choosing to limit himself, to respond to evil with love and self-sacrifice, and embraces the outcast? I’m probably trying too hard, looking for metaphor when I should just be enjoying the action.

I think I’m right, though, in my judgement that the message of X-Men Apocalypse (and of all the films in the franchise) is:

be a mutant and be proud, develop your “gift” and use it – hopefully for good.

It’s a reminder worth the price of a ticket.

Inked

Tattoo1

Well, I have capitulated to the trend and gotten myself a tattoo. I know they’re becoming so common as to be passe’, but I enjoyed the process nevertheless.

If you haven’t guessed, it’s a rendering of Mary (the mother). I’m well aware that the image is typically Western, and bears no resemblance to a first century Middle Eastern Jewish woman. But my interest is symbolic. For me, Mary is a potent religious symbol, provided she is not depicted with her eyes downcast in submission (a woman’s traditional religious role), but instead stares proudly at us, eye to eye. As patriarchy and pain in childbirth was the female curse in the Eden, so is it significant that that it is a woman who births the one intended to liberate us from the curse of oppressive power in all its manifestations.

I’m not sure whether men can be feminists, but at the least I am an ally; and feminism (especially feminist theology) has shaped my thinking. Indeed, it’s feminism that asked me to think critically about what it is to be a man, and what it is not. I’ve learned at least that I don’t need to be a stoic warrior, that vulnerability and strength can go hand-in-hand, and that the longing for beauty transcends gender.

I am the rose of Sharon, and the lily of the valleys” is a citation from Song of Songs 2:1. It is the female lover’s self-description that in Christian tradition has, strangely but also strikingly, been taken up as a symbol of Christ. And the dove, obviously, represents the Spirit. So if we allow Mother Mary to point to the Father, the tattoo hints at the Christian Trinity, without the all too common reified masculinity.

None of this explains, though, why I got myself inked. No doubt the answer is the same as it is for anyone; vanity. I am used to being stared at – that goes hand-in-hand with disability and wheelchairs – but since my accident I have fallen in hate with my body. While I had been tall, fit, and healthy (yes, I know, vanity), I’m now a potbellied hunchback with a disobedient lump of meat for a body. So doing something artistic with that lump of meat reaches toward self acceptance. It’s my way of saying, “hey, look at this, there is something on my body that is actually worth staring at.”

My thanks to Jin O at kaleidoscope tattoo for her artistry and friendship.

Why I hate Jojo Moye’s Me Before You

me before you

It’s hard for me to convey how much I hate Jojo Moyes’ supposedly romantic novel Me Before You, and dread the movie that is due out later this year. It is the story of a romance between a wealthy play boy become quadriplegic and his carer, although it’s a romance with a twist.

Spoiler alert: I need to discuss the ending to explain my hatred, so stop now if you (God forbid) want to read it yourself. But I begrudge anyone spending money that might find its way into the author’s pocket.

Okay, where was I. To borrow Moyes own summary, “the book is about a quadriplegic who wants to die.” Actually, the book is about a quadriplegic who wants to die, and at the end of the book chooses to do so – despite the fact that he found love and had a loving and supporting family, and so had an amazing opportunity to live a full and flourishing life. He was, after all, as rich as is a bottle of fine whiskey, and could have afforded any number of compensations to manage life with a disability– unlike most quadriplegics who are poor, but still choose to live.

So let’s not beat around the bush. This is a book celebrating suicide. Worse, it’s a book that presumes that suicide is the only rational response to the experience of living with quadriplegia.

In an interview about the book (available here), Moyes was asked whether she knew a quadriplegic before she wrote the book. She replied:

“not quadriplegics. The thing that really informed it was a member of my family who suffers from a progressive disease. I have been involved in feeding her, taking her out, and that kind of thing. Part of what inspired Me Before You was just questions I had in my head about quality of life.”

Bloody hell. Moyes (when you read that name, say it with venom) writes a book about quadriplegics and she hasn’t met one. Had she done so she would have discovered a community of people that have the courage to choose to live.

Now, before you get on your high horse and remind me that some people do choose to die, and that’s their right, let me say that I understand that quadriplegia is downright hard to live with, and many people have it much harder than I do. And the person that chooses suicide has my compassion and support.

But I’m not going to celebrate that choice. And I’m not going to allow someone who has never met a quadriplegic to continue the myth that those of us with the injury would be better off dead.

Right, breath slowly, relax. I’m feeling a bit worked up.

I guess if you are looking for a tear-jerking romance that will get you thinking, you might enjoy this book. If you do read it, I hope that you notice that it reinforces the stereotype that women need a man to tell them what to do, and that you understand that our play boy hero is really a privileged white guy who just can’t come to terms with the fact that life is fragile and difficult but that if you fight the good fight and persevere it’s worth it in the end.

Grace trumps justice

Elly sent me this video today of a woman tumbling 300 metres down a snowy mountain and (spoiler alert) ending up with no more damage than a sprained finger. By comparison, I fell an innocuous metre and broke my neck. Not that I’m wishing an injury on this woman, but …

It goes to show, if you didn’t know it already, that life isn’t fair.

It’s the injustice of life that, at least for me, makes the concept of grace so compelling. Justice is an ancient concept, a virtue that says that one should give to a person what is her or his due. It’s one of the four cardinal (or linchpin) virtues that is meant to colour the decisions and actions of a good person. This explains why many ancient religions applied the notion of justice to God, assuming that if God was good, then people must get what they deserve; the righteous prosperity and the unrighteous damnation.

The problem, as the psalmists and the author of the book of Job noted, was that the logic didn’t seem to work. Evil people prospered and good people suffered.

Some theologians conclude from this that people do get what they deserve. And what everyone deserves is divine wrath, because we are all depraved and utterly corrupted by sin. That anyone at all is “saved” is grace, which is undeserved favour. The problem with this way of thinking is that it makes grace as unfathomable as injustice.

A larger view of grace, however, recognises it as a gift of God’s love that is evident in the goodness, beauty, and wondrous fragility of creation. Grace is said to be both natural and supernatural, the former because the orientation to the good is in all of us, and the latter because the orientation to evil is also in all of us, so we need God’s help. Grace is God’s favour toward us, most potently experienced by his presence in the darkness that is an inevitable part of life.

That this woman survived her fall is testimony to grace. That I am able to flourish with a disability is thanks to grace. That we discover hope in grief is possible because of grace. That we are loved and accepted as sinners is amazing grace. That we find joy in the love of family and friends, who accept us warts and all, is the power of grace.

Life isn’t fair, but if you didn’t know it already, grace can make it beautiful.