Luke | Disabled and poor people are primary at God's table

It's been more than twenty years since my mother died crippled, lame and blind. So how does a body like hers experience the church? And why is this important?

Read here or listen here.

Bloody hell

Jairus is a big shot: he’s a deacon at the church on the hill. Everyone knows his name. He’s a Rotarian; he’s a member of the golf club; his photo’s always in the local paper. But he has a twelvie, a daughter, who’s really, really sick, so sick she’s about to die. So Jairus comes to Jesus and begs him: “Heal my daughter! Touch her, rescue her, let her live!” Jesus agrees, so they start walking to the house, the crowd pressing in; and in the crowd is a woman ... Read here, or listen here.

Bent out of Shape

Image from the website of Saint Peter and Paul Orthodox Church, Boone, NC

A reflection on Luke 13:10-17 and Psalm 71:1-6
Alison Sampson, Sanctuary, 21 August 2016

When I was in the seventh grade, we all did drama at school. One day, each of us had to walk like somebody else. One girl walked slowly across the room. Her hands were folded in front of her. Her back was curved over, her shoulders were hunched, she stared at the ground as she walked. It was the saddest thing I’d ever seen. I said something to the kids next to me about how awful it was, and wondered aloud who walked like that. The kids laughed. “Are you joking?” they said, “Don’t you know? Anyone can see that it’s you.”

A Gift Far Too Small

A friend of ours had been sick for a long, long time. He had multiple health problems; he had dementia; and he had been in a slow decline for years. After many dips and rallyings and further crises, it looked like the end. His wife called some very dear friends to let them know. They lived on the other side of the country, but they jumped on a plane and flew over to see him one last time. When they arrived, it was time to eat. Nobody felt like cooking, so they ordered Chinese takeaway.

To read more, click here.

Image from donaldkrause.com.

‘The nurture of adults by children in family settings’: Birthday cake

Someone we love is ill with depression. He also suffers from social anxiety and struggles to leave the house. When our kids ask why he doesn’t come to dinner anymore, we try to be matter-of-fact. We explain that he is not well. We explain that he has something called depression, which has various effects; among them, it is very hard for him to spend time with other people. But for all our matter-of-factness with the kids, we adults don’t feel matter-of-fact at all.

Because it’s been a long, long absence and I am beginning to realise just how much our relationship has changed. We used to invite him to things; but I realise that now we just invite his partner, and mention that he is invited too. We used to send him texts; but now, we rarely do. We used to ask him to do things, but now we are afraid of asking too much, and no longer make the requests. It’s been a gradual shift, never deliberate or intentional; but I am beginning to realise just how much we participate in and reinforce the social exclusion triggered by the illness.

And for all our tip-toeing, and wondering questions, and reading, and delicacy on his behalf, he is of course still ill. We never see him, and we miss him. We never talk, his burdens and gifts are never shared, and we still don’t know what, if anything, we can do to help.

Recently, it was my daughter’s eleventh birthday. A week before her birthday, she sought out this person’s partner and asked whether he could bake her birthday cake. When I found out, I went to my daughter and asked her about it. She hadn’t seen him for many months, and so I wondered why she had asked. ‘Well,’ she said, ‘I thought it would be good for him to be included in my birthday. And maybe to know that he can give something to me, even if his illness means he can’t come to the party. Is that okay? Do you mind?’

Tears came to my eyes. I gave her a huge hug, and I told her that she was one of the wisest and most generous people I know, adult or child. She had stepped right across an invisible, toxic social line just by asking for a small, good thing; and I recalled the ancient text: ‘sometimes a little child shall lead them.’

Through his partner, our friend agreed to my daughter’s request. He found a recipe, his partner did the shopping, and he baked the cake. His partner brought the cake to the birthday party, and we all sang Happy Birthday. We missed our friend, and wished he could have been there to sing along with us – and yet, in some ways, he was. For in our midst, at the centre of our singing, sat the cake that he had made, that precious thing my daughter had both given and received: a blessing.

And it was delicious.

**

The title of this post comes from a study by Elise Boulding, who asked young people how they had nurtured adults in their families while they themselves were children. The article is not easy to find, but if you want to go hunting here are the details: Boulding, E. (1980). 'The nurture of adults by children in family settings'. In H. Z. Lopata (Ed.), Research in the Interweave of Social Roles: Women and Men (Vol. 1, pp. 167-189). Greenwich, CT: JAI Press.

Response: The Free

We hear a lot about American extremes, whether it’s gossip about the extremely wealthy, or reports of violence among the extremely disaffected. But what of those who will never be successful, but are neither on the rampage nor quite on the skids? For that, we once relied on Joe Bageant; but since his untimely death a couple of years ago we have needed to look elsewhere.

One serious contender is Willy Vlautin. Vlautin, who has worked in warehouses and at painting houses, is also a gifted and elegant writer. He writes essays and novels and, as songwriter and vocalist for Richmond Fontaine, songs; and he has just released a novel about ordinary people in the mess that is America.

The Free opens when Leroy, an Iraqi veteran suffering brain injury and posttraumatic stress disorder, wakes in the night. To his astonishment, he is having a rare moment of clarity. It has been so long since he has experienced this, and he is so profoundly grateful for the gift and the beauty he perceives, that he cannot bear to descend again into darkness and confusion. He decides to liberate himself, and attempts suicide. This is a framing device for the character-driven novel which goes on to describe small, good things (as Raymond Carver once put it) done by small, good people who are themselves on the brink of collapse.

Leroy lives in a home for servicemen with acquired brain injuries, and Freddie, the nightwatchman, finds him. Freddie tends his wounds, calls the ambulance and Leroy’s mother, and gently helps the other servicemen back to bed. As the story progresses we learn that Freddie is crippled by medical bills. He works in a paint store by day and in the group home by night; even so, his house is twice mortgaged and his power is about to be cut off. Despite these pressures, he finds kind words for the counterwoman at the donut shop each morning, and drops by the hospital between workplaces each evening to sit with Leroy and leave small gifts on his nightstand.

Coming in and out of Leroy’s room is Pauline, a nurse. Pauline becomes particularly attached to one patient, a young teenage runaway; and she also cares for her mentally ill father who spends his days on the couch watching TV. We also meet Leroy’s mother and ex-girlfriend, and numerous other minor characters.

Their interwoven stories are studded by Leroy’s PTSD-driven nightmares. In his mind, Leroy and his ex-girlfriend are on the run from the super race. Having been marked as cowards, they are being hunted down for slaughter. Images of war – hangings, shootings, bloodbaths – pepper his visions, which gradually reveal his self-understanding as someone who is unable to integrate his experience of war and is permanently damaged as a result.

It is difficult to write about decent people without mawkishness or naïveté, but Vlautin manages it with rare grace. These are no saints, just people getting by – but choosing to get by as well as they can, given their crushing circumstances. His spare style recalls Carver’s lean prose, spliced with Leroy’s Orwellian dystopic dreams.

Although it is a story about individuals, The Free also illuminates the toxic effects of untrammelled capitalism. Leroy joins the National Guard to impress his boss and keep his job, not knowing it could lead to overseas service. Freddie is bankrupted by private healthcare and criminally low wages. Although he flirts with potentially lucrative illegal work, the timing of other events means he is still shunted into sub-standard housing. Pauline’s father lives in cold filth for fear of heating and water bills. Others live on the streets or in squats, or get involved in endeavours that lead to prison. The Free touches on these and many other issues as it describes life in the corporatocracy and ponders where people on the margins find freedom. And while Vlautin has no paradigm-shattering answers, he does offer small and precious glimpses of grace.

A lump, and quiet wisdom in the night

Not long ago, I found a lump. Not only that, but my breasts were sore and ached as if deeply bruised. To women of my age, that means only one thing: panic! For a week I shuttled between medical services. My doctor felt the lump and raised her eyebrows. She sent me off to the hospital. I stripped down in a tiny cubicle and put on a freezing, open-backed gown. I was shown into a dark room where a brisk woman ground an ultrasound wand into my aching breasts. She decided I needed a mammogram, and so I moved to another dim room where a different brisk woman pulled and kneaded my tender breasts into place, lowered the great weight of the machine until they were nearly flat, and took some shots. When it was over, I dressed and wandered out through a crowded waiting room, feeling sick.

The next day, the hospital called me. The pictures didn’t give them enough information; I had to go back. Again, I waited in a crowded room, stripped off in a tiny cubicle, and had my breasts kneaded into place. Again, the machine squeezed them into pancakes and took shots. Again I dressed, and left feeling sick.

And all the while, I panicked. Calm on the outside, I went through the motions; but inside, I was in turmoil. I couldn’t sleep. Instead I lay in bed each night beside my husband, kneading my breasts, feeling the soreness, getting the full measure of the lump, and thinking about death. Not yet forty, the mother of three primary school aged kids: I was not prepared to die.

About three o’clock one morning, something shifted. I realised that life was good. I didn’t want to be married to anyone else; I enjoyed being a mother; I loved where we live; I loved my work; and I had recently understood my life’s trajectory, a big deep satisfying revelation which filled me with a sense of home. And I realised that there was little more one could expect from life than to come to understand oneself, to be happy with one’s situation, and to be flooded with gratitude for all that has been. Even if this life was coming to an end, it had already been so much more than enough; I had already experienced abundance.

A couple of days later, I discovered that the lump was not malignant; it was just a lump; and the sensation of bruising was just the latest symptom of the candida that has raged through my system for years.

If the results had been different, I don’t know whether I would have been able to hold onto that early-morning moment. The quiet wisdom of the small hours is hard to remember in the full light of day; in the face of work and study and children; in the reality of sickness; in the waking awareness of all the things a person my age is still expected to do and be.

But I want to record it here, to remember that at one time I knew deep in my bones that already my life has been more than enough; already, it overflows with goodness and mercy; already, my life is abundant.

A honeymoon period

A little while ago, my husband damaged his back. This has meant a stay in hospital, followed by therapy and rest. After six weeks, he's finally returned to work full time, but he's still exhausted; this healing business takes time.

You'd think that I've been upset, anxious and afraid – not to mention exhausted, frustrated, and annoyed. But to my surprise, I wasn't, not at all. Cool, calm and collected more accurately described my state of mind. 'Right,' I thought, 'honeymoon's over. Time to get to work.' So I ran the household. We usually split the childcare, but I took on his kindergarten and school runs, and the hanging round the park between pickups. He usually cooks one night a week, but that couldn't happen, so I've done that too; and he usually does the grocery shopping, but not this month. The cleaning, washing and everything else are my responsibility anyway; and to cap things off the kids first got a virus, then threadworms, which meant washing extra linen and scrubbing the house.

On top of that I read a bunch of books and articles and wrote almost 5,000 words for university, and penned a couple of columns, and drafted and recorded half a dozen short pieces for a new project. So you could say I've been busy.

And it all felt fine.

Our relationship kicked off fifteen years ago, during a time of tumult. He was getting divorced, my mother was dying, we fell out with first one church then another, I had an abusive employer, he stepped up to a major new role at work, and so on. The first couple of years we were together were really, really hard. Things were just settling down when we had a couple more significant deaths, and our first baby, which really knocked us around; but the last seven years have been a breeze!

And at some level, I've been waiting all this time for the next thing to happen, because living on an even keel can't be normal. Now that something has happened – thankfully nothing too major – I realise I've experienced the last half decade as a honeymoon period.

So instead of being upset, all I can think is, what a lovely thing to realise about one's relationship!

A Taste of the Kingdom

This piece first appeared in Zadok Perspectives No. 114 (Autumn 2012). The Summer edition is out now, with my reflection on learning to live with enough.

***

A few months ago, my husband and I had that rare and precious thing: the spontaneous offer of a babysitter. We decided to go out for dinner. We lucked upon the last table at a lively restaurant and shared a fantastic meal, with wine to match each course.

As the evening drew to a close, I sat there turning my glass in my hand and reflecting on how well we have eaten over the years. Before we had children, we dined out several times a week. Since then, we have visited Europe twice with young kids and eaten our way around Italy, Germany and even, surprisingly deliciously, Great Britain, while at home we buy nectarines, mangoes, avocadoes and all sorts of other foods that neither of us had much as children; they were far too expensive back then.

Flooded with gratitude, I said to my husband, “I have had so many good things to eat in my lifetime, it really wouldn’t matter if I never ate another decent meal again.”

As is the way of fate, a couple of days after I made this claim I went to a natural therapist to try and tackle years of fatigue and constant illness, and in particular the development of debilitating arthritis; and, as I wrote in last quarter’s Zadok Perspectives, I was immediately placed on a very restrictive diet for four months (no sugar, gluten, fruit, dairy, alcohol or caffeine), with the additional caution that I should strictly limit my intake of these foods for the rest of my life.

The timing was impeccable. I had just made a big claim about food; here was my opportunity to test it. In any case, I was so desperate to feel better that I quickly adopted, and have largely stuck to, the diet; but I soon found myself wondering what to do about eating with others. How would we celebrate a birthday if I couldn’t eat cake? What would we have for a friendly afternoon tea if I wasn’t eating scones? Who would come for dinner if I didn’t make dessert or pour out the wine?

Clearly, hospitality wasn’t going to work if the sweetest thing on offer was a carrot stick. On reflection, however, I realised that the restrictive diet was only about eating. I could still cook whatever I liked; whether or not I ate the food was a separate issue. So I stuck to my usual pattern of whipping up banana loaves on Mondays, when Grandpa comes to visit; baking cakes on birthdays and grumpy days; and making cookies to take to friends.

I thought I might resent cooking food that I could not eat myself, but I also thought it would be a good test of my generosity. To my surprise, however, far from resenting the situation, I have discovered that I still love to make special things. Previously, I hadn’t realised just how much the act of preparing and offering food gives me pleasure; I had thought a great deal of the pleasure was in the eating. But seeing friends and family savour and relish what I have cooked, and watching them grow expansive after the second glass of wine, makes me tremendously happy; and, as my taste buds shift to a more savoury palate, my desire to eat the food myself grows less and less.

It’s the opposite of most advertising messages, which encourage us to satisfy ourselves and make ourselves happy because, we’re told, we’re worth it. Instead, as I chomp my way through yet another handful of nuts or celery sticks, or perhaps crunch into some rice crackers which are, I admit, growing rather tiresome, I recall that others are worth it; and in seeing them respond to the loving care that is communicated through a slice of cake or a basket of scones or perhaps a pot of soup I cannot eat, I find myself expansively happy and deeply satisfied, having never even taken a bite.

PS - For those who are curious, a year or so later I am now drinking wine (you gotta live) and caffeine (which helped me limp through the debilitating fatigue I experienced during a month of eating gluten prior to a test for coeliac disease). I aim to wean myself off caffeine again when things have settled down. I still eat very little cane sugar, fruit, gluten and cow's milk.

The Sun: Forgetting

The following piece appeared in the Readers Write section of The Sun last month. The Sun is my favourite magazine, jam-packed with strong writing. I recommend it very, very highly. You can read excerpts from each issue on the website, and also find subscription details there – yes, they do post to Australia. If you want to hear the piece below read as a podcast by the kind folk at the Audio Internet Reading Service of Los Angeles, click here; then click on 'The Internet Part 3 / Forgetting Part 1'. My piece begins at 10.33 – but why not listen to the whole thing!

***

At my mother's funeral, a family friend took me aside, gave me a hug, and said, "You'll soon forget all the illness and be left with just happy memories."

She's a good friend, but she was wrong.

When I was a teenager, my mother worked seventy- and eighty-hour weeks, and I went days on end without seeing her. At the age of seventeen I moved out, feeling I barely knew her at all. A year later I went home for my first visit. While I was there, my mother woke one morning to find she had no feeling in her left leg.

Within eight years she was dead from a particularly vicious form of multiple sclerosis: Eight years of burning pain, progressive numbness, and creeping paralysis. Five years of wheelchairs. Two years of quadriplegia. More than a year of hearing loss and vision impairment. And, at the end, nothing but a tiny voice squeezed out of lungs so weakened by paralysis that they finally stopped expanding.

I'm now thirty-six, and I can barely remember my mother when she was well. When I try to think of her walking, it's a blur; images of her standing are summoned from photographs. Instead I remember crooked hands, swollen feet in orthopedic shoes resting on the footplates of a wheelchair. Her skin was dry and sloughing off (a side effect of her medication). The bright-eyed, inquisitive mother of my childhood had become lethargic, heavy, and dulled by pain. I can't even remember her original voice. The illness was all-encompassing. In frustration and grief I have largely given up trying to remember; instead I look for her in me.

When I wash dishes, there are her hands, setting the dish rag out to dry. When I hang laundry, there are her fingers, clipping pins to the corners of my sheets. I sit at my desk and feel the resolute set of her jaw. I look in the mirror and see her eyes looking back at me, kinder now than they often were.

It's not quite remembering, these little glimpses of my mother in me, but it's enough. I think of it as a friendly haunting — painful at times but infinitely better than no memories of her at all.

The Witch Doctor

This piece first appeared in Zadok Perspectives No. 113 (Summer 2012). The Winter edition is out now, with my reflection on the houses in my dreams.

***

What would it have been like to be healed by Jesus? I have largely regarded the healing stories to be about the restoration of people to their community; but more recently I have had such a strange experience of physical healing that I find myself revisiting them.

For many years now, I have been tired, very tired, so that I always feel like I am wading through molasses. I have mentioned this to several GPs, who have all patted me on the head and told me it's grief / I have young children / it'll go away.

For many years, too, I have had mild twinges in my joints whenever I stood up, brushed my teeth, or turned around too sharply. I have put on weight; felt bloated; caught every bug that went around; and experienced many other small niggles, all of which I dismissed as signs of aging. Until recently. Recently, the twinges in the joints became screaming pain, so that for a few days I could barely turn on a tap, pick up a pen, or go up or down a step. This was clearly not right for someone in her middle thirties, so I went to the doctor.

Blood tests established that I didn't have rheumatoid arthritis, or any of a dozen other conditions. The doctor announced it must be viral arthritis, handed me a script for anti-inflammatories, and told me to prepare for the next few months as the virus slowly worked its way through my system.

But the diagnosis didn't fit. I explained that this pain wasn't new; instead, it was an exacerbation of my normal. I had experienced aches and pains in my joints for years, and blaming a virus didn't make sense; however, the doctor was unmoved. So off I went, clutching my script and wondering.

A couple of painful weeks later, someone recommended a natural therapist who had a knack with odd conditions. In desperation, I arranged a visit. The therapist greeted me but asked no questions about my symptoms. Instead, he looked into my eyes with a torch for about thirty seconds, then said that I had a deeply depressed adrenal gland. So, he said matter-of-factly, I expect you've been having severe arthritis; lethargy and fatigue; chronic dermatitis; weight gain; lots of colds, flus and gastro; bloating especially after eating wheat; heavier periods; anxiety; and perhaps depression. You've been suffering most of these symptoms for years now. What was the traumatic event five to ten years ago that triggered it?

Once I had scraped my chin off the floor, I confirmed that I had all the symptoms bar full on depression, although I had certainly lost my spark; and that, among a cluster of major events about a decade ago, my mother had died.

'That would be it,' he said, 'but don't worry, this is easy to treat', and he prescribed a four month program of meditation, stringent dietary restrictions, herbal tablets and exercise; he told me I'd be right as rain in no time, with more energy than I'd had in years.

I went home and ate forbidden bread and butter, then polished off some forbidden chocolate. That evening, I sucked down a pint or two of forbidden beer, and reflected on the course of treatment.

What I began to realise was that I was reluctant even to try it.

Of course I longed to feel energetic, of course I didn't want to feel joint pain, of course I was fed up with being sick, of course I wanted to lose weight. And yet how much of my writing has come out of a slow approach to life that is a physical result of lethargy? How much of my reflective nature is a gift that comes out of pain? How many of my friendships are based on a personality which is shaped, to some extent, by being in this particular body that feels this particular way?

I was scared to follow the regimen because I didn't want it to work. I knew how to be an exhausted, flat, mildly depressive person who feels slightly sick every time she eats a sandwich. I barely remembered the playful, mischievous person I once was; and I didn't know how to integrate her into my relationships with my husband, my children, or anyone else.

I had felt old for such a long time. I didn't know what it would be like to feel young again; long ago I had accepted that I was aging, and modified my life and expectations accordingly.

Too, I'm a cook with a blog about local food. I knew how to use spelt and apples and cream; I didn't know how to cook and write about a gluten free, fruit free, dairy free, sugar free diet necessarily reliant on grains from thousands of miles away.

The concerns were ridiculous, of course – how much more joyful would life be if my energy and playfulness were restored? – but knowing this didn't make them go away.

It made me wonder about the people Jesus healed: was it all plain sailing for them? Or did they, too, struggle to give up some aspects of their self-definition as a cripple, a bleeding woman, a blind man, an outsider? And it caused me to reflect on other aspects of life. How often do we compromise or even refuse healing – physical, emotional or spiritual – because we're too scared of change, even if it's change for good?

I couldn't answer these questions, but I needed to make a choice. Would I opt for the comforting familiarity of pain and fatigue, and the person I had become; or would I take a punt on the mysterious promise of naturopathic healing and all that might unfold?

A day or two later, I grit my teeth and went shopping, stocking up on nuts, corn cakes and vegetables. At the time of writing, I've been on the program for a week and am already feeling a little better: like a crippled man throwing away his crutches, I have hurled the anti-inflammatories into the deep recesses of the medicine cabinet and am running up and down the stairs again.

As a child, I longed for Jesus to cure all my ills. Now I wonder if the Great Healer is to be found in an uncanny iridologist nicknamed the Witch Doctor. He looked into my eyes and perceived my pain, both physical and emotional; he saw me as an integrated whole. It is possible that what was promised has come, once again, to pass: I have encountered Christ in the stranger, and a very strange one at that.

(To those lovely people who first read this in Zadok and wrote to me about coeliac disease – put your minds at rest. I have had a gastroscopy and I do not have coeliac disease, just a nasty gluten intolerance.)

Better an empty house...

 

What do George Bush Sr and I have in common? Well, last week I was staying with friends. Ten of us were sharing a bathroom and, thanks to a raw foods meal heavy on the broccoli, I contracted food poisoning. The chances of the loo being free when I needed to throw up were slim, so my friends gave me a plastic container. Rather disconcertingly, it had measurements marked up the side, which is how I know I threw up almost a litre of broccoli and other raw delights.

I’ve never loved broccoli. Having been nose deep in the scent of partially digested florets for an evening, I’d have to say I like it even less now; and thus George and I finally have something in common.

Presidential comparisons aside, I was completely knocked out, and it took me a good two or three days to recover. As six kids – theirs and ours – swirled around me, I felt so apologetic.

I don’t know how many times I said sorry: for contracting food poisoning, for needing the vomit bowl, for throwing up, for washing the bucket out in their laundry sink, for needing to lie around for a couple of days, for being a bother, for being useless.

I could hear myself apologise again and again, and as I listened to myself I wondered. My friends are good kind gentle people, which is why I love them; and they treated me with a care far beyond the call of duty. They tried to take the bucket from me and empty it; they made it clear that I was to wake them at any time I needed them; they insisted that if I threw up on the bed or floor, they would clean it up. I wasn’t to do a thing other than be sick, and rest.

With such gracious friends, why did I apologise so profusely? Contracting food poisoning is hardly a moral failing. Do I think I am lovable only when I am active, healthy and useful, loading the dishwasher and hanging out washing and taking kids to the beach? Do I fear that my appeal will drop away the instant I reveal myself to be a sick, weak, vulnerable, embodied human being?

Yet it is our embodiment that has built the friendship. We’re not friends because of years of dry intellectual discourse; our friendship is based on walking together and sharing meals. It’s been years of swapping clothes and holding each other’s babies and giving each other a hug now and then; it’s being there for long hours when one of us needs to cry and the other has a safe warm room and some tissues. The very things that have cemented our friendship – our bodies which are flattered by similar clothes, our bodies which love good food, our bodies which walk and talk and relax at the beach – are what make us vulnerable. It is only because we can become bright with wine that we can be bent over by bacteria in our gut.

And I am the same person, well or ill. Better an empty house than a bad tenant, I said late at night, before cleaning out a warm bucket of sick; and, as I apologised for the bad joke, my friends who like me however I come looked directly at me, and laughed.

Riding the Bus with my Sister

Just up the street from me live some 80 people in supported accommodation. Their problems range from intellectual disabilities to schizophrenia to frontal lobe damage caused by stroke or other injuries. Some of these neighbours are easy to get along with; we lean against our garden wall and chat about the weather or the footy. Some are just familiar-looking strangers we pass by on the street. And several are more difficult: paranoid, verbally abusive, erratic and even, at times, physically threatening.

Each person is, of course, an individual, and their problems are only one facet of their personality; but there are certainly times when I lack patience with some of them: those who chat one day and treat me as a stranger the next; those who scream abuse; those who shout and sing just in front of our house when I'm trying to settle a baby.

Meanwhile one of the crossing ladies at school is well and truly on the autism scale, and to my shame there are days I find it difficult to greet her cheerfully yet again as she obsessively calls out everyone's name, holds the same short conversation as yesterday and the day before and every day for three years before that, and refuses to believe that a young child could be terrified as she shoves her large face into the pram.

So it was with great interest that I read Riding the Bus with My Sister, by Rachel Simon. Simon's sister Beth has mental retardation (Simon's phrase). Beth is able to live by herself in a form of supported accommodation, but she does not, and possibly cannot, work. Instead, she spends her days riding buses. Every morning, she rises early and heads to one bus stop or another, then criss-crosses town meeting up with her favourite drivers. On the bus she sits in 'her' seat, cattycorner to the driver, plays music on her portable radio, and makes loud observations about life, the bus drivers, fellow passengers and whatever else excites her attention. One year, Beth exacted a promise from Simon to spend twelve months riding the buses with her whenever possible, and the book is the result of that year.

Simon uses the book to tell several stories. The first is, of course, the story of riding the buses with Beth, who is spirited, belligerent, defensive, large, loud, opinionated, bossy and unforgiving. Simon charts a year of early starts and sisterly conflict; bus drivers and health professionals; and mad dashes to public bathrooms at timing points. Some of the bus drivers are particularly charming. Among their ranks are story tellers, philosophers and comedians, and their hospitality towards Beth far exceeds their duty as drivers; these stories alone are worth the read.

The book also documents the relationship between the sisters. Before the year, Simon and Beth lived in different cities and had grown apart. Simon writes quite honestly of her discomfort with Beth's issues, both historical (having the sister in the 'slow' class at school) and current. Beth sounds exasperating, and Simon struggles through the year to come to terms with who Beth is now, rather than with who she wishes Beth might be. She investigates how much of Beth's personality may be an expression of her disability, and gains some new insights into why her sister is the way she is. Despite her ongoing ambiguous feelings about some aspects of Beth's personality, Simon documents a growing respect for her resourcefulness and a much gentler love for her.

Her year with Beth was also an opportunity for Simon to reflect on her own emotional state. Her significant relationship had fallen to pieces; she was working insanely long hours and was deeply lonely. Slowing down and spending time with Beth, as well as the more philosophical, pastoral or compassionate bus drivers, helped her reflect on what she had prioritised in life, and enabled her to make some different choices.

The final part of the story is their shared history, told in flashbacks through the book. Their parents split up, and their mother fell into a pattern of abusive relationships which ended in the abrupt abandonment of her children.

Simon's slight tendency to make everything neat is more than compensated for by the dynamic people in this book: Beth, her long term boyfriend Jessie, the bus drivers, even Simon herself. It is a pleasure to read. But what makes Riding the Bus really valuable are the questions it raises. What is it like to have a sister who is largely oblivious to one's own needs and the needs of others? How do you talk with someone like this? Who is responsible to care for such a person, and what supports need to be in place? What are the emotional and relational costs of caring for such a child? How liberating is self determination if the person making decisions is constantly self-destructive? What are the ethics of sterilisation when someone is sexually active and loves small children, yet is incapable of caring for a baby? How can someone express hospitality through their work, and what are the limits? Over the course of the book, Simon grapples with these and other difficult questions from a very personal vantage point.

It's a book which makes me think carefully about how I treat my neighbours, my crossing lady, or anyone else with a mental illness or disability. There are certainly times when I want to shun one or another because, quite frankly, they are a pain in the butt. Other times I am tired and grumpy and lack the patience to have yet another boring conversation about the weather. Riding the Bus with My Sister is a great gift because it reminds me to slow down, and have patience.

It shows how one such person is a dynamic whole person, embedded in a community, and reminds the reader of the obvious but easily forgotten point that people with mental disabilities have families, histories, stories, secrets and desires, just like everyone else; and, like everyone else, they come bearing gifts. Whether or not we take the time to recognise and receive those gifts is up to us.

Caffeine hits and sugar spikes

More than a year ago now, I wrote about how much I needed wine in the evening. I didn’t drink half a bottle, just a glass to settle my jangled nerves while the kids squabbled and I cooked. It was either that or shouting everyone to table and bed. I felt bad about the dependency, but there it was.

Nine months later, I was placed on a very restrictive diet: no sugar, gluten, dairy, fruit, alcohol, or caffeine. I was worried about how I’d manage without that glass of wine at the end of the day, but my health problems were sufficiently severe that I adopted the diet almost immediately.

To my surprise, I coped just fine. There’s been no real yelling, in fact less than usual, and, while I missed the social aspect of wine with friends – not to mention toast with butter and jam – I didn’t miss the daily glass one bit.

Had my personality suddenly changed from wound up spring to positively yogic? Or had I been deluded all this time into thinking that my jangled nerves couldn’t get through a full day without a glass? Well, neither, really.

Four months into the diet, it came time to reintroduce or experiment with the restricted foods. Like the good girl that I am, I started not with fresh fruit (it blows me up like a balloon), but alcohol. Last Thursday, an old friend came for dinner and, in for a penny in for a pound, I drank two thirds of a bottle of wine. I was on top of the world, and the next day felt fit as a fiddle. It was wonderful. And while I don’t intend to start drinking every night, it seems I can enjoy wine with friends from time to time – and I will. Wine restores me to my rightful place as the storyteller at the dinner table, a role that I don’t fill to the utmost when I am stone cold sober.

Next I tried caffeine. Within minutes my body filled with adrenalin, my heart started to race, my hands grew sweaty and I became highly anxious. A sense of foreboding swelled and bobbed like a threatening grey balloon just above my head; my chest constricted in fear. I wandered around for a few hours waiting for the axe to fall, but it never did. Instead, the caffeine gradually cleared out of my system and all was right with the world again. Hmm, not so good.

I had always assumed that being anxious and highly strung was just part of my neurotic and irritating personality – but was it since I started drinking coffee? I certainly had a lot to be anxious about at that time. I had recently moved countries; my mother was very ill; and a lot was going on. Perhaps the coffee only exacerbated how I was already feeling, back then. Now, however, there is little to be anxious about, yet my high levels of anxiety had faded away only when I went on the exclusion diet.

A few days later, I tried sugar: pure candy, which I never usually eat, and with nothing to slow its effects. Within fifteen minutes, I was screaming like a banshee at a child who had left her shoes in the hallway. When I had calmed down I apologised, and had a think.

I had previously suspected sugar to have a volcanic effect on my temper, which is why I rarely eat much of it. Having completely eliminated all sugar for four months and, during that time, never shouted unduly at the kids; and then, having eaten three test candies and positively erupted, this was proof enough for me.

I was seventeen when I began drinking coffee, which means I’ve had nineteen years of two to four coffees a day, sometimes more, with a small sweet treat to pick me up in the late afternoon.

Nineteen years of jangled nerves and pounding heart, with a sugar spike just before dinner time.

Add children to the mix and it’s no wonder I self-medicated with alcohol. Take away the caffeine and sugar, and dinnertime is fine; no wine required. I realised that it wasn’t the kids who were the problem at six o’clock; it was me and my bad habits.

It’s shocking to think that I have razzed myself up daily for almost twenty years and never really noticed. I wrote myself off as an anxious person who doesn’t cope with stress when, in fact, the things I don’t cope with are caffeine and sugar. In other words, all this time I have been causing the majority of my stress through the things I have chosen to eat and drink.

I don’t know whether to be frustrated that we have endured so many years of my carefully reined in bad temper, a temper that now appears not to be an intrinsic part of my personality, or just deeply relieved that I have found the key to letting the temper fade away. Mostly, however, I feel glad for my kids that I have found a way to be calm. I no longer have to use all my tricks – counting to ten, leaving the room, or transforming the shouting into an operatic aria – as I now rarely feel the surge of rage that leads to the urge to shout.

I also feel sad for my own history. My mother was far more highly strung than me. A wrong word could set off an explosion, and I was the expert in wrong words. Our relationship was always fiery, never calm. Now I wonder if she, too, was winding herself up every day with her dozen cups of tea and a sweet biscuit in the afternoon. Meanwhile, she tried to fit in a lot more than me, combining child rearing with demanding work. She was always tired, and always felt guilty because she never had enough time to do everything she wanted. If she was feeling as physically wound up and anxious as I have been feeling, then, combined with the stresses she placed on herself, it is no wonder that she exploded regularly; we just couldn’t seem to get along.

I have a fantasy that we could meet each other again, no caffeine, no sugar, no work pressures. No shouting, no surges of aggression, no adrenalin spikes, just two women on odd diets but otherwise quite ordinary going for a stroll along a riverbank. In quietness, we could listen to the water tumbling by. We never knew each other calm, but I wonder whether, in such a space, we might find a gentle peace.

Don't Kill the Birthday Girl

'Hi, I'm Fred.' Really? Well, I'm Alison, and I have a wicked temper and slightly depressive tendencies; I'm allergic to this, that and the other; and I have a weird and pathological fear of looking beautiful, thus the extremely short hair, the lack of makeup and jewellery, and a wardrobe almost completely devoid of skirts.

Fred is edging towards the exit by now, as well he should be: such an opening is hardly the path to a little light conversation, let alone the beginnings of a beautiful friendship. And yet it is common. I certainly have been guilty at times of identifying myself primarily by my weaknesses: Little Miss Asthma, Lady Mother Dying, The Homesick Chick. But now I prefer my primary identification to be something other than my neediness, so I prefer my vulnerabilities to be largely invisible in social contexts. I prefer it to be mostly invisible in others, too.

One thing I like to be invisible about is allergies (except, obviously, in this post). Before we talk more, we need to clean up what allergies are. The word 'allergy' is often used carelessly; I hear people say that are allergic to wheat, meaning that they get a bit windy when they eat a sandwich. What they suffer is an intolerance; this is not the same as an allergy.

Bundling allergies in with intolerances risks linking them with food fads and Hollywood diets; and this, I reckon, is part of what leads people to think that allergies are kind of funny, certainly annoying, even imaginary. Yet if people don't take them seriously, and then have anything to do with the food we eat, people with allergies get more than a bit of wind; they get a full blown reaction as their immune system goes berserk trying to rid their body of the allergen. I'm allergic to a few things, and by allergic I mean that I react to eating them by wheezing, vomiting, and, occasionally, going into anaphylactic shock.

Of course, trying to act nonchalant as a young teenager when everyone else is stuffing their face with prawn crackers – and I grew up with a crowd of south east Asians – is not easy. I have vivid memories of eating those crackers in full knowledge that they would make me sick, but hoping so much that this time it would be okay. I just wanted to fit in, but of course the dry mouth, thick tongue, itchy throat and major stomach cramps hardly helped with that little project.

As a young adult, one birthday was particularly memorable: someone bought me a Drambuie, a hitherto untried drink. I took one sip, and felt that telltale tickle – the beginnings of anaphylaxis – at the back of my throat. But I didn't want to mention it, or be rude. So I took another sip and, of course, immediately started hawking and coughing and spluttering as my throat closed up and I could no longer breathe. Not cool, Alison.

Many allergy sufferers could tell similar stories of risking their health if not their life for the sake of trying to appear normal; and I am sure many allergy sufferers would have made the same decision as me time and again, of not using or even carrying the dreaded EpiPen and risking the hubbub, the nausea and the trip to the emergency room that follows. Instead we try to flush out our systems with water and Benadryl, and hope for the best.

So it was with a mixture of trepidation and interest that I picked up Don't Kill the Birthday Girl, a memoir about living with allergies. I was afraid it might be an annoying whingeathon by someone who identifies herself primarily as 'Allergy Girl', but I was pleasantly surprised.

Sandra Beasley is allergic to many things, making it very difficult to navigate eating out in any context in a culture where eating out is the norm. But to my great relief she opens with the statement that "those with food allergies aren't victims. We're people who – for better or worse – experience the world in a slightly different way", and that attitude carries, more or less, through the book.

Beasley mixes up personal anecdote with social observations and a great deal of information. I learned how the body forms an allergic reaction; why a friend's son had a second, stronger, reaction to peanut oil hours after his first reaction; why the American food landscape is so infested by soy; how food labelling laws are the result of allergy lobbyists; and what it's like to be an allergic mother to children who are allergic to different things. She dispels some of the myths surrounding the current explosion in allergies, and uses her experience as an entry point to explore many aspects of American food culture. Much of what she says is interesting, and she is up front with how her personal agenda is sometimes rattled by what she learns.

Beasley asks some particularly good questions about ritual, especially communion. Communion is the high point of the Christian religious service and involves, in one way or another, the sharing of bread and wine. At my church, we have wine and water available (the latter for those who are allergic to grapes and for recovering alcoholics); and wheat bread with a rye embellishment (the rye is for those who are allergic to wheat). Many congregations have similar practices. But some, notably those Catholics who follow the explicit directives issued by Ratzinger, are forbidden from using any alternative to the Papal-sanctioned wheaten wafers, thus excluding many congregants from communion.

She is not a churchgoer, but she raises important questions about the nature and purpose of ritual, asking "Is it inclusiveness that makes rituals valuable? Or is it maintaining the ritual's integrity that matters, even if that leaves someone out?" She writes about being the child who never got a birthday cupcake when they were handed out at school, and being the young adult who could never accept a slice of wedding cake, or shake hands with or kiss anyone who had, and how painful those exclusions were.

In the same way, it is intensely painful for Christians to be excluded from communion, and Beasley's observations on communion and church policies are helpful for the general reader. (I will add that it is clear to me if not the Holy Father that, since the greatest commandment is to love, what the communion wafers are made of doesn't matter one iota; what matters is welcoming people in.)

She also asks good questions about the current hysteria surrounding keeping children safe. Is it really necessary, she asks, for entire schools to go nut free? Surely children must learn to manage their food allergies and use a little common sense. She cites idiotic news stories, such as the evacuation of a school bus because a peanut was rolling around on the floor (apparently a threat, even though no one was planning to pick it up and eat it), and asks whether it really takes a whole village to protect a child from a peanut.

Don't Kill the Birthday Girl is sensible, thought provoking, and also darkly funny in its tales of anaphylaxis at the most inconvenient times. One thinks of people with allergies as being so terribly, terribly earnest, but Beasley has a refreshingly self-mocking stance.

The book wobbles a little as it navigates between personal anecdote and more general information – I would have preferred the information to be less bound up in Beasley's personal experience – but overall it is a good read. What I found especially valuable was the normalisation of my experience: stories of anaphylaxis and its aftermath; and stories of not managing one's allergies well because of peer pressure and the desire to join in.

More than anything, however, I valued Beasley's stance that our weaknesses – whether allergies or, and I'm extrapolating here, other health and wellbeing problems – are only one part of our lives, and they are far from the most interesting part; nor do they warrant special attention. They need be mentioned only when necessary and can otherwise stay in the background. Don't Kill the Birthday Girl is a call to understand the particular problem of allergies, then move on.

As Beasley writes, "Not every page is meant to tell your story. You are not the focal point of every canvas. This town is busy... My job is to center on staying safe in this world, but my job is also never to assume the world should revolve around keeping me safe. We have more important things to worry about. Don't kill the birthday girl. The gifts are wrapped and the piñata waiting. We have a party to get to." Hear, hear.

French Salt

 

Last week, my two younger daughters had a fever. The fever would rise and rise, then break for a couple of hours before building up again. Four days it rose and fell; four days they perspired and grizzled and napped on my body; four days they woke at midnight, and two, and four in the morning; and on the fifth day, they were well.

But on the fifth day, my husband was headachy. Then his forehead became hot and he began to sweat. After three days in bed, hot and delirious, with headaches and muscle aches and nausea to boot, he went to the doctor. Unlike the kids, he was diagnosed with strep throat, and is now on antibiotics.

The next day, my oldest complained of a sore tummy and a pain in her throat. And my youngest started sweating again. So we went back to the doctor, and the oldest has strep throat; but my youngest just has a rotten cold.

It's now Day Ten of illness. Two members of the family are on penicillin, a third has a hacking cough and is pouring snot, and a fourth still has the pale face of fever. And this morning the fifth, the well one, that is, I, woke up with a sore throat and a bad taste in the back of her mouth. But I am determined not to be ill; I don't have time. In desperation I quaffed scalding hot drinks, and then I remembered salt gargle.

The only salt we have was a gift from a friend, who brought it with him from Europe. It's an unrefined product harvested from the salt marshes of Guérande. The crystals are large, damp, and blue-grey. It may be artisanal, it may be precious, it may be highly desirable, but it does not look like something I want to put in my mouth – I usually throw it onto my food without looking too closely.

But I had to make gargle. So I dumped some into a shallow coffee cup and dissolved it in hot water. Clear against the white cup, residues floated: black and brown specks suspended in a grey solution.

I sighed, took a mouthful and threw back my head. And was immediately thrown into the waves at Port Beach in Fremantle, where we used to swim as children in a landscape of container ships and silos. I remembered the slow rollers pushing my body, and the elation the first time I managed to leap up at just the right moment, paddling frantically until the wave caught me and I bodysurfed into shore.

The salt water pushed at the back of my throat, and I recalled hot nights and burning vinyl car seats and the way my thighs would stick to the seat so that I'd have to peel them up one by one. Going home from the beach, I'd sit on my wet towel and feel the weight of my hair hanging in a heavy rope against my back. My bathers would be full of sand; my lips, delicious with salt.

We lived in a narrow terrace on the hill overlooking the jail. The tiny front garden was filled by a single small tree, a frangipane, and the terrazzo veranda was heady with its scent. I'd pick a creamy white flower and sink my nose into its golden throat; my sister and I would pin the blossoms in our hair.

As my breath petered out, I spat out the first gargle and looked at the water in the cup. Small grey filaments were forming; they looked like little sea worms. I shut my eyes and took another swig. I felt the salt water hit the back of my throat, clearing out the passages, opening it up just as sea water channels through a limestone cliff.

And remembered a day long ago spent playing in a deep rock pool. Long straps of kelp were rooted to the ocean side. My sister and I swam across and clambered up the rough wall of rock, fighting the waves. At the top, we grabbed the kelp as the water roared over us, pulling and sucking at the heavy strands and at the girls wrapped around them holding on for dear life, hearts pounding, heads ready to explode for lack of breath. The kelp forest was filled with a golden light, and lime green and pink seaweeds drifted past. My body rolled with the kelp and scraped against rock, and as the current surged I heard the rattle and clank of rocks tumbling across the sea floor. Short of breath in the here and now, I opened my eyes and spat.

I took a third mouthful, and remembered sitting outside away from adult eyes and gargling. My sister and I would tip our heads back and gargle until we giggled so helplessly that we choked. I remembered hacking away, great strands of mucus and water shooting out of my nose and mouth, and the two of us howling with laughter, sides aching. And when we'd recovered, we'd wipe our faces, and do it all over again.

I couldn't remember the last time I had gargled, or blown bubbles with a straw, or laughed until something went nasal. I felt the salt water scouring my tonsils, and my throat relaxing at the thought of old laughter. I smiled. Water sloshed out the side of my mouth; I spat, and wiped my chin.

I took the last mouthful and as I tipped my head back I thought of my friends in Berlin who had given us this healing salt, this key to old memories. I recalled the friends this week who had phoned or dropped in to see how we were; the friends who took two daughters for the day; the friend who wanted to cook us a meal; and all the other offers of help. As water tumbled around the back of my mouth, small rivulets breaking loose and trickling down my throat, I felt myself floating on an ocean of friends and family and memories.

My eyes pricking with salt tears of gratitude, I gave the water one more swirl, leaned into the sink, and spat.

Washing in strange places

One of my friends defines travelling with small children as doing washing in strange places. When we visited Berlin a few years ago, this was certainly the case. The washing facilities were Im Kellar, a floor unmarked on the elevator panel. It was accessible only in the company of Margaret – a six-foot-six hairy-legged deep-voiced twin-set-and-pearled transvestite – who held the key which, at a turn, sent the elevator deep underground. Margaret was reluctant to take us there, yet refused to lend the key. She also refused to sell more drying tokens than washing tokens, although every load of washing required two cycles through the dryer.

Twice, my husband sat locked down Im Kellar, a dark labyrinth of storage cages for the apartment buildings above, out of phone range, lit by a single bulb over the machines, for the two hours it took to launder a single load. The first time, I thought he had been kidnapped. The second time, he took a book. The third time, he refused, and we found a public Laundromat instead.

When we visited Hong Kong recently, Im Kellar came flooding back.

Day One. Baby eats everything in sight: bamboo shoots in black vinegar; steamed dumplings stuffed with pumpkin; bowls of noodles. Baby gnaws happily on salt and pepper squid, long dangly legs hanging out her mouth and swinging gently against her chest. Baby smiles at everyone, waves and shouts bye-bye to the ladies on the bus, the touts on the street and the dozens of people who take her photo.

Day Two. Baby throws up on everything in sight. Daddy, the shoe of a Filipino maid, Daddy, the footpath, the backpack, stairs, Daddy again. She waited until we were well and truly out, then was spectacular. Hours after we took refuge in our hotel, she threw up on Mama, Mama's new slippers, the bedspread, the carpet and the bathroom floor in one little spree.

We were in a hotel, so I called housekeeping. I had mopped up the worst with towels, but the maid insisted I stop cleaning. She flapped her hands at me, shooing me away before getting down on her hands and knees to polish the floor. I sat wrapped in a towel, sitting on the edge of the tub next to my sodden clothes, watching her back and waiting so I could take a shower.

Thankfully, our hotel had a laundry room. They sold us all the tokens we needed, we did two loads, and all returned to normal. But my friend was right. Travelling with small children means washing in strange places, some more strange than others.

It would have vexed me except, as another friend said: So what if your kids are grumpy - you're eating croissants in Paris! Or, in my case, dim sum in Hong Kong! Vomit and all, I was thrilled to do my washing where I could watch eagles circling the hotel, or see the tackiest light show in the world before putting the kids to bed. What a privilege!

But I do think of the maid, on her hands and knees cleaning up the last of the mess; and the Filipino maid on the street, so cheerfully dismissive of the splash on her shoe. Baby threw up on a Sunday, the day of rest. The Filipino maids left the apartments where they work and live to be with their friends in the streets of Central. In their thousands, they spread over several city blocks.

With nowhere else to sit, they laid out blankets and flattened cardboard boxes on the ground. Some arranged open umbrellas around their group, handles pointing inwards, carving out a small private space to nap while others chatted or read or played cards. Some passed small netbooks around, so friends could check emails. Some swapped photos, or dozed, or gossiped. And so many smiled and waved at my kids that my heart constricted.

Many were my age. Many have degrees, but can earn much more as maids in Hong Kong than in professions at home. And many have left their own children to earn the money their families need. It brought home how wealthy we are, I am. I went to look around. They were there to do other people's washing and look after other people's children, leaving their own children and washing behind them.

Every Sunday, they go out to see friends, rest, and prepare for the week ahead. And on that Sunday, as woman after woman greeted my daughters, who perhaps for a moment reminded them of their own little ones, my eyes filled with tears. How I long for a world in which they could do their own laundry, and where the only people doing washing in strange places were those mad enough to travel with young children.