the chaos inside

Once upon a time I went to a counseling centre–in Pasadena, CA. It has been at least a couple of decades since I was there. I remember a framed poster that read, ‘You must carry a chaos inside you to give birth to a dancing star.’ At the time–I was in my early twenties and hadn’t yet read all the Nietzsche I have so far–I thought it justified my internal turbulence. A dancing star sounded good, like the right reward for having struggled through the darkness and desperation.

A good few years on, I have yet to see anything like a dancing star. Just a lot more chaos. I’d like to be able to explain how it all worked out, to point to the low points on the journey and share the momentary, spectacular views. Not that there haven’t been splendid vistas along the way–there have, of course–but that the way is rather up and down and meandering: the journey is ongoing. The chaos is ongoing. I’m not certain that the dancing star is ever going to turn up.

Perhaps I was foolish to mistake depression for some sort of spiritual gestation. I guess that’s a thing some of us do in those hopeful, early years of adulthood. Things have to mean something, and we need to be figuring out that meaning. Now I am not so sure: the chaos inside is just chaos. I am not any nearer to figuring it out now, three decades after I started trying.

That’s not to say that there aren’t any dancing stars, or that hanging on and working on the chaos isn’t worth it. It’s just that there is no formula that dictates how bright a star we are owed for the years of chaos we have endured. It doesn’t work like that. If I knew how it did work, I would try to explain it. But I don’t, and I am not sure that there is one way it works all the time for everyone.

So if you are on the chaotic road, I can’t tell you where it ends or how to get off. But I can tell you you’re not alone. I’m going that way, too. Maybe we can walk together.

on dyslexia and superpowers

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I think a lot about disability. This is not just because I have an 18-year-old with Down syndrome. It is also because I have a profoundly, excruciatingly dyslexic 13-year-old and a 9-year-old whose dyslexia is less devastating.

Knowing about my struggles with dyslexic kids, a neighbour (author and educator Adam Bushnell) kindly lent me Philip Schultz’s memoir, My Dyslexia. I can see why he commented that, for Schultz, dyslexia was ‘like his superpower.’ Having overcome his dyslexia to become a Pulitzer Prize-winning poet, Schultz credits his success to the blocks to reading and writing that seemed insurmountable in his early childhood. Not in spite of his dyslexia did he achieve what he has achieved, but because of his dyslexia.

Maybe so. I don’t doubt that the struggle shaped him. But not all dyslexics are as fond of books and words as he was (and never mind the slipperiness of the definition and diagnosis of dyslexia). And–more importantly–not everyone with dyslexia has his grit. He owes much to his persistent, even indomitable, self-belief: ‘even when the entire world seemed to be ganging up on me, some persisting sense of myself argued on my behalf’. Ditto for the young scientist Schultz admired, who called her dyslexia ‘her secret weapon’. I’d say the credit goes to her consistent, pig-headed determination and sheer force of will. Dyslexia provided her with a mountain, true. Hope and courage enabled her to climb it.

The challenge that people with dyslexia face is the same, at bottom, as the challenge we all face: to ‘learn to love what is weakest and most confounding about ourselves, because and despite and in deference to what is essential about us’ (all quotations p. 117). The great challenge of his life, and mine, and my children’s, and yours, is very simple. It’s all about not giving up.

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This is true whether it’s dyslexia or depression or Down syndrome (or just daily life during a pandemic) that challenges us. I almost wrote ‘afflicts’ there; I hesitated because it’s an unpopular way of thinking about disability. So negative. But affliction is exactly what Schultz describes; it’s what my son experiences; it is, if I am honest, the way I experience depression. And it is the affliction that stirs, in some of us, the gritty response that makes for success. The super power of the oyster is not the irritation provided by the grain of sand but the ability it has to smooth over that irritant until it forms a pearl.

In a sense, then, we are the most ‘disabled’ by the conditions that afflict us when we lack either the ability to recognise the grain of sand or the mountain for what it is, or we lack the hope and courage to surmount it. Most days, I would say that Anna, my 18-year-old with Down syndrome, isn’t especially ‘disabled’ by her genetic idiosyncrasy. Having thought through Schultz’s book, though, I see that’s not exactly what I mean. In terms of sheer not-being-able-to-do-stuff, Anna is always going to ‘win’ the competition for the most disabled. Yet she is not usually afflicted by her condition, and I am beginning to see why: she doesn’t see the summit. We clamber around on the slopes together, but there’s no determined ascent.

Maybe that’s why I’m still a little uncomfortable with these thoughts about mountains and overcoming. Why do some people make it to the top while others are defeated by the summit? I don’t know. I may not know much more about disability than I did before reading Schultz’s book. But I have seen in a new and crystal clear way that my kids who need to see the summit and learn to climb need grit more than any other intervention. And that is more helpful than I can say. Thanks for the loan, Adam.

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The Most Holy Trinity

At least during the pandemic, we don’t have the weekly argument about going to Mass, or the complaints that it’s boring. That doesn’t exactly comprise a silver lining, though: when we (the parents) tune in to Mass at Blackfriars (Oxford), the kids get on with other things. The 16-year-old is asleep, the 13-year-old is watching YouTube, the 9-year-old is skating around the house on her roller blades, and my eldest is listening to music and humming along. This is better than the nerf war that was going on during the Liturgy of the Word. (It may also be noted that one of the adults is asleep on the sofa during the Eucharistic Prayer and the other is writing this blog.)

Keeping the feasts and fasts while physically separated from the Church is tough. We fail a lot. And regular prayer is hard, too. I thought that one of the redeeming things about the pandemic would be the possibility of praying Compline ‘with’ the community in Kent I so enjoy visiting. But it is often impossible to follow along–we can’t understand the sung words, and the video lags. I don’t mind. The rest of the family does, and so we haven’t been joining in. Universalis has continued to be a lifeline for me. I stay connected by knowing what day it is–today is the feast of the Most Holy Trinity; were it not a Sunday, we would remember St Robert of Newminster today. When the kids are out of school, holidays are cancelled, work is squished in around lessons, and the usual schedule of activities and appointments is suspended, it is easy to get lost–hardly remembering what day of the week it is, much less the month and date. Tomorrow there will be no school run, and we won’t go to work. It will still be Monday, though: Monday of week 10 in ordinary time (or St William of York, if you observe his memorial). Liturgical time goes on, pandemic or no pandemic, lockdown or no lockdown. I am grateful for that.

And I am grateful, more grateful than ever, for communities like the Dominican friars we join for Sunday Mass and the Benedictine nuns I like to visit at Minster Abbey. A few years ago, I wrote about the nuns, reflecting that my misunderstanding of Sr Johanna revealed an important truth about the relationship of the wider Church with such communities. ‘I’ve got your back,’ I thought she said. That wasn’t what she said, but it was true. While I am here, with my family, loosely following the Sunday Mass, it is happening, just as it always has, at Blackfriars and everywhere that religious communities gather for the celebration of the Eucharist.

I would rather be there, of course. And I would rather wrestle the kids out the door of the house and into the door of St Bede’s than listen to them running up and down while I try to follow the homily. But in these strange times, it is good to know that we are the Body of Christ: we are incorporated at baptism and we members are nourished by our participation in the Eucharist. And yet, we remain joined to the Body even at this distance. The regular communion of the nuns, the monks, and the friars benefits us; we participate in a mystical way. So the act of spiritual communion that we make (thanks to the prayer given us by the friars) is real. It’s just not physical.

I think what I have been doing for the last hour, since the beginning of the Eucharistic prayer, is considering why I keep on sitting here, while Mass is going on somewhere else. While my participation in the liturgy is rather two-dimensional, involving two senses rather than the usual 5, it helps me to make the spiritual act of communion. And so I will tune in again next week.

Third Sunday of Easter

The weekend after Easter—Easter Saturday and the Second Sunday of Easter—didn’t seem like a weekend at all. Time is like that these days. Even having virtual Mass on a Sunday and keeping to the school week doesn’t erase the sense of being in some kind of liminal time. It is almost like the strange stretch of the summer holidays when we are home and our friends are away, still on holiday somewhere. Almost. But not quite, because when you do see people out and about, you have to stand six feet away from them to have a chat, and the topics of conversation are far from the usual.

The signs of spring continue unabated. The farm smells as farm-like as ever, pungent, with mixed aromas of cow and sheep and heaps of dung for fertilizer—or so I imagine. What else could those smelly heaps be for? Some of the sheep have been shorn, and in the field along the path lambs skip (really) as the adults graze, untouched by the energy of the new generation. Their skipping time has gone.

Sometimes I feel like that: my skipping time has gone. These have not been easy days for me, though I can’t blame the dreaded virus. It’s just me, as I have always been, with ups and downs. Lately the downs have dipped into deep darkness and despair. It has occurred to me that this may be normal for me, but it is not normal. So maybe my normal can change. This is a radical thought, mind you.

But not, I think, an impossibility. And that is somewhere to start.

Deo gratias.

The cruelest month?

April is the cruellest month, breeding
Lilacs out of the dead land, mixing
Memory and desire, stirring 
Dull roots with spring rain.

I’m not sure whether April really is the cruelest month, but this year it might be. By all accounts, the pandemic is bound to get worse before it gets better. It hasn’t been a happy week, but at least my family are all well, so I must summon some gratitude and get on with it.

The natural world carries on without regard to the number of new COVID-19 cases (on the rise) or the stock market (not on the rise). Birds still flit to and fro carrying nest-making materials, singing their usual songs, and occasionally staying still long enough for me to identify them.

Early springtime is erratic. One day, we have sunshine and almost-warm weather; the next, it’s blowing a gale and threatening snow. The signs of spring are also inconsistent. The oaks still think it’s winter, while the gorse blooms bright yellow.

And in a strange twist of fate (par for the course this week), wordpress won’t let me upload any new photos. Cruel. 

 

a thing about theology and disability

I frequently tell my students that sometimes writing clearly requires stating what seems blindingly obvious. Don’t worry, this is not a post about good writing. (If you want to read some, my current example is Bill McKibben’s Falter. I wish my prose was in the same league as his.) This is a post about something that is blindingly obvious to me, and how it came to be that way. That is, most of the things that seem to us to go without saying don’t just appear that way. They’re things we’ve learned. In my case, I have learned them the hard way (which often sucks, but the lessons stick).

This is a story about how I came to think about disability and God in the way that I do now. Once upon a time, I was teenage girl who intended to have kids and be done with it by the time I was 30. Why? (Wait for it…) Because I was so certain that I could never, ever cope with having a child with Down Syndrome. (File under ‘Please God, don’t send me to China’.) Well, I was sort of right: I am not good at coping, and sometimes I fail spectacularly. I was wrong, though, to think that my life would be better without a child with Down Syndrome in it.

About 18 years ago, I was a PhD student writing about Christian identity. As I thought about what it meant for someone to be a Christian, I found myself thinking about things like ‘imagination’ and ‘belief’. If Christians are shaped by doctrine and Scripture, then how can a person who doesn’t understand either be called a Christian? I’ve written a good bit about that elsewhere—not only in my dissertation, which became a book, but in articles I’ve written since then. Christian discipleship is fostered by study of Scripture and doctrine, but not because knowing stuff gets us closer to Jesus. The object of the discipleship game is to follow, and being smarter doesn’t make us better followers. ‘Taking every thought captive to Christ’ is the imagination’s job with respect to Christian discipleship; the more, and the more elaborate and fancy the thoughts, the more help (from doctrine and Scripture) we need to capture them.

There is an implication of my proposal that I don’t spell out, though. I don’t say it in anything I have published, and yet I keep saying it—to students, to friends at conferences, in emails—as if it ought to be obvious. It is that disability names a feature of most human lives at one point or another, but it does not name something that impairs a person’s discipleship. That is, ‘disability’, as we human beings think about it, doesn’t block a person’s relationship with God. As my friend John Swinton has pointed out, we are known by God. So we should not make the mistake of believing that human being’s relationship with God depends on the person’s ability to know God. Scripture and doctrine agree that we can’t. But we are known by God, and can come to know God in that being known. Disability doesn’t get in the way of God knowing us. (Now there is a lot more to be said about that, in a lot more technical detail. But I hope that we can agree that, for example, I don’t need to be able to speak to be able to pray. I’ll leave it there, and be glad to answer questions.)

The point is that, from God’s point of view, we are all ‘disabled’—we don’t know how to pray as we ought to; we cannot see God; we don’t have the capacity to know God. If we want to pray well, we ask for help; if we want to see God, we ask for God to reveal God to us. And we wait. The only thing that really counts as disability here, the only thing that impairs our relationship with God is sin: we turn away; we refuse to ask; we refuse to wait. That, and not any impairment of mind or body, corrupts our relationship with God. No hearing loss, no paralysis, no cognitive impairment, no mental illness, nothing that disrupts our earth-bound and social existence can separate us from the love of God.

A long time ago, I was the mother of a tiny child, a little girl with Down Syndrome, whose potential for Christian discipleship I came to see as fully equal to my own. And she cannot explain the Trinity to me, but she can draw me into prayer. She remembers in her prayers those for whom I have forgotten to pray. She knows how to say sorry (though she doesn’t like to say it any more than anyone else does) to others and to God.

I am grateful for having been ‘sent to China’: from within this landscape I see things differently. I see what really impairs us human creatures—it’s not the limits of our intelligence or our skill set; it’s the limits to our humility, patience, and love. And I am unspeakably glad that I have daily before me a model of humility and an encouragement to my patience, and that in this crazy life we have together, there is Love—more than I ever knew there was in the whole world.

Deo gratias.

I suck at everything

I suck at everything. No one will miss me.

Or so I think, more often than is good for me. And when I think it, I am sure beyond all doubt that it is true and real and final.

I take a walk, long after dark, almost always in my slippers, and care not what might go wrong with this stupid trek. Except sometimes I hope the neighbours don’t spot me and decide I am crazy. Eventually I decide not to go into the woods, because I have begun to think that maybe someone will notice that I am gone. Then who knows who might come looking for me and what unwelcome chain of events might be set in train. However much I suck at everything, and however sure I am that no one will miss me, I am not (that) crazy. (Still, I’ll step into the road and glare at the car approaching, as if to say, ‘You’re going too fast. If you don’t slow down, you’ll hit me and it will suck for you. I really don’t care.’ The car slows and I move on like a cocky 5-year-old who has chased away some seagulls.) Dejectedly, I turn for home. Like Lucy Pevensie, I find I’ve not been gone long enough. I guess time in my own private anti-Narnia passes at a different rate from ordinary clock-time, too.

The thing is, there is a dark narrative that flows deep beneath the surface of my ordinary, everyday life. In this story, I am no good. Against every possible measure to which my paltry achievements might be set, I am a failure. I’ll spare you the litany, for it is depressing for me and would be boring and ridiculous to anyone else. This storyline runs alongside a stream of peace and sense of place in the universe, one that is entirely disconnected from the notion of my usefulness. So mostly I walk in the narrow space between these two opposing accounts of who I am and what my life is about. Sometimes I wade happily in the latter stream, feeling, well, invincible.

And then something nudges me, and I stumble. I fall into the waters of the dark and dangerous stream, somehow at once turbulent and deep. I am pulled down, as if by a heavy stone, by the sense that I suck at everything, and nobody will miss me. Fortunately, I am too stubborn a swimmer and too petrified of drowning to go under. After thrashing around for a while in the murky water, I crash back onto my slim patch of ground soaking, feeling like the Hulk in the film—the one in which he has that countdown since his last ‘hulking’. I’ve probably smashed some things, emotionally and psychologically speaking, as I tumbled through the current. I’ll spend the next few days muttering apologies shamefacedly.

This is my life as I know it. As I have always known it. Ever since I can remember. Sometimes it doesn’t suck. And the greatest gift I have is being able to forget how awful thrashing around in the churning and murky water was, for stretches long and short in between my plunges. I am grateful for that. I’d like to be able to remember just a little bit better, when I am clutching at fast-moving branches, that it isn’t always like that, it’s not always dark and terrifying and desperate. For the time being, I’ll take my persistent and stubborn refusal to drown as good enough. After all, it’s worked so far.

And for that, in the grey light of morning, I say: Deo gratias.

 

All set for Christmas?

A few people have asked me whether I’m ‘all set for Christmas’. This is one of those questions that makes up autumnal small talk around here, beginning very early in November.

It may be an unintended rebellion against the idea that ‘all set for Christmas’ has to do with buying presents and not with the orientation of the heart, but I have yet to purchase a single Christmas gift.

Advent starts tomorrow. I can’t say at the moment that my heart is in the right place, the place of expectation and longing for the kingdom of peace, where all tears will be wiped away, and creation will be released into the joy for which it was made. Being all set for Christmas, for me, is about the preparation of the heart.

Don’t get me wrong. I love the tree-trimming, the present-wrapping, and all the yummy things that are a part of the external preparation for the feast. But these do not make me ‘all set’ for Christmas.

Come to think of it, only God can do that. All I can do is keep looking in the right direction and wait for it.

Death among strangers

It’s a funny thing. Talking to relative strangers about the deaths of loved ones. Hardly a light topic for an early Friday afternoon, but there we were. I’m not sure how we got on to the topic, really. We’d started out talking about window cleaners (the folks who do ours aren’t very good, and apparently are a lot more expensive than the guys who do theirs).

Then, suddenly, we’re talking about Terry, who died at 54 of a massive heart attack—me, with his widow and his daughter. It was a shock. It was the middle of the night. He’d been watching the football and didn’t come up to bed. And it hurt my heart to hear it, of course. I thought about the shock of my grandmother’s sudden death, and the upside-down-ness of the world after my mother died unexpectedly.

The funny thing isn’t death, of course. The funny thing is how much less alone in the world I felt afterward. Nothing funny about a man dying at 54 and leaving a widow, grown children and adoring grandchildren. But in the talking about it, with the crazy things the relatives did and the way the then-25-year-old daughter managed everything, there were the funny bits and the shocking bits, and the poignant bits. How the then 7-year-old grandson was devastated and still hasn’t fully recovered. How the siblings who weren’t speaking to the deceased wanted to elbow their way in to everything. How his widow struggled and couldn’t get out of the car at the funeral home.

We laughed and gasped. We didn’t cry. (We don’t know each other that well, I guess.) And I thought about those I loved who have died, and those I dearly love who someday will.

I can’t say the conversation ‘cheered me up’ exactly. How could it? But in a strange way, a way I can’t quite understand, I know I’m better for it. My feet are on the ground, and my heart feels full of life.

It’s a funny thing.