Caring for Jamie

33 years ago this week, I gave birth to our second child, a girl we named Helen Elizabeth. She was tiny, hated sleep, and always wanted to do what her elder brother did. She had two paces – run or carry me. When she didn’t get her way, she threw spectacular temper tantrums. She was the quirky kid who loved to wear odd socks (one bright pink, the other bright yellow). She organised the neighbourhood kids to wear black to attend the funeral of a pet mouse. She stood in front of the Lane Cove Community Orchestra as volunteer “conductor”. She sang, she danced, she played. She dreamed of going to NIDA.

But in her teens, things began to unravel. Following her brother to a selective high school, she excelled in the subjects she loved, but didn’t try in the ones that she found difficult. A for Art, D for Maths.

We tried a different school. She had days of exhaustion, headaches and “gluggy” throats. She sat down on the hockey field because she couldn’t stand any longer. Her beloved grandmother, my mother, died. She was robbed when attending the cinema in the city. We began the merry-go round of doctors. They recommended various medications and supplements – even a new pillow – but nothing changed.

 

Friends and colleagues had been suggesting she might have “Chronic Fatigue”.  But I was a health professional; no daughter of mine would get such a way-out disease.

It was the early days of the Internet and I attended a course to learn how to use it. As  an exercise, I searched for Chronic Fatigue. To my amazement, there were diagnostic criteria. And Helen had most of them.

After a few more doctors, we knew what we were dealing with (but were no wiser about how to deal with it). She wasn’t a malingerer; she wasn’t lazy. She wasn’t “just” depressed or anxious. She had Chronic Fatigue Syndrome, now usually referred to as ME/CFS – the ME standing for Myalgic Encephalomyelitis.

The diagnosis gave a sense of relief, but it didn’t end the merry-go round. In early 2001, CFS was still referred to as the yuppy flu. People had a rough idea what it was, but not many people knew anyone who had it. But everyone had a recommendation: acupuncture, naturopathy, various dietary manipulations, psychiatry, Buddhism, massage  – the ideas were endless. When other parents complained that their kids were staying out late, we just wished our daughter was able to go out anywhere except medical appointments.  

 

Eighteen years on, most people know someone who has had some sort of fatigue illness; some have recovered and others are still disabled after years or decades. The internet means that those who are housebound can still be part of an active community. Back then, doctors didn’t know what to do. To a certain extent, they still don’t. For years she has tried antidepressants, vitamin B12 injections, antibiotics, Chinese remedies, supplements. She still takes some. Are any of them better than snake oil? We will never know.

So in Carers Week 2017, we are still looking after our amazing quirky daughter. She has had periods of reasonable health. Although she didn’t finish school, she did a few subjects at Uni and lived independently for a while. She changed her name. But every recovery was followed by a relapse. Shortly after we downsized into a unit she needed to live with us again. My study became her bedroom. She is the shadow in our retirement.

 

We have pushed her in wheelchairs to galleries, cinemas and museums. She has watched her friends progress in their careers and their lives while she has missed out on parties, theatre, fun and relationships. In the early days we spent long nights fearing she would take her life, as so many with this illness do. As a family, we have moved from anger, through grief, to acceptance. But we have never lost hope.

Last year was better than this one  – she could catch public transport. This year we are driving her again – or she takes a Uber. But she can shower herself and doesn’t need a wheelchair or a walking stick. She celebrated her 33rd birthday with a group of friends, but will pay for it with pain and fatigue for the next few days.

As well as Carers’ Week, this is the week that Jen Brea’s successful documentary Unrest will be shown in Sydney. And after years of despair, there is a feeling of hope in the ME/CFS community.

Although research funding remains miniscule, there is good evidence of altered exercise metabolism, changes to the microbiome, brain imaging and and inflammatory response. In Australia, the NHMRC is setting up an expert advisory committee, including  a representative from the peak consumer body, Emerge. The National Institute of Health in the USA is spending more on research, and the UK PACE trial has been repudiated for its extremely bad science.     

The new research may be too late for Jamie. But we hope she will be able to live independently, and not in poverty, when we are gone. We hope that she will find love. Whatever happens, she is our Wonder Woman.

Emerge.org.au

www.unrest.film/

 

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Why I don’t do Anzac Day

Yesterday I was asked whether I observe Anzac Day. I don’t.

I never have.

In my childhood, it was the day when my father came home drunker than usual. In my teens I marched against Vietnam and in my twenties I visited Gallipoli (long before it was upgraded to its current status as a shrine). I was on a bus tour from Kathmandu to London; it was part of the itinerary. It didn’t mean much.

Then, like most of my generation, I just ignored it.

But when Australia became involved in modern wars – Iraq, Afghanistan and now Syria – politicians decided that reviving Anzac Day was a great PR opportunity. Suddenly, young boys who’d joined the army for a chance of adventure when jobs were hard to find became self-sacrificing heroes. But the Indigenous men who fought alongside them continued to be overlooked, just as they had been when returned soldiers received land grants and other benefits.

Those who came home with shattered bodies and broken minds were also sidelined, as were the professionals who nursed them. There was scant mention of the wives and children who suffered bullying and domestic violence by men who couldn’t fit in to life after the horror they had seen. Vietnam veterans continued to be ignored and no-one talked about how women who had taken on vital work during the war were sent back to their kitchens.

Anzac Day became a civil religion, with more people attending dawn services and marches. But while we heard more and more about mateship and sacrifice, as a nation we became less compassionate, demonising the victims of today’s wars as they desperately sought safe refuge on our shores. We locked them up in hot, soulless conditions, called them queue-jumpers and let their physical and mental health deteriorate.

When I began thinking about this, I thought it might be time to put my cynicism aside and consider joining the ranks of Anzac observers. These days, Indigenous diggers are acknowledged, PTSD is taken seriously and Vietnam veterans are no longer pilloried.

But the story of Anzac, mateship and sacrifice remains a boys’ only adventure. The sight of politicians grandstanding at dawn services, and further reflection on how we treat today’s victims of war have left me with no choice but to remain a non-observer.

Lest we forget the wounded, the broken, frail and the lonely.

Passions and solitude

These days we are told of the many things we can do to postpone or avoid the dreaded Big A – Alzheimer’s disease. Crosswords, sudoku, gardening, exercise, learning a language – and others – have all been touted as the answer. I have heard that it really comes down to having a passion. So when someone asked me recently “what are you passionate about?” I had to stop and think.

I retired early – frustrated by spending more time on paperwork than on helping “clients” in the health care system. For much of the last fifteen years I have been caring for my husband or my daughter – sometimes both – as they moved through various phases of different illnesses.

But this year they have both been well, and I have had more time to explore how I want to spend the next 20 years or so. Providing I keep the Big A away.

I took up Bridge. I loved it at first, but playing in a crowded room of chattering older-borns is not as enticing as playing in the quieter surrounds of lessons. And my competitive instinct can take the fun away when I don’t play as well as I’d like. At school, I would infuriate my Latin teacher by making silly mistakes while getting the harder things right. Sadly, the pattern has carried though to Bridge.  I will persevere, but Bridge is not my passion.

I volunteer at one of Sydney’s museums. It’s a great opportunity to meet people and tell them about our fabulous city and its Indigenous and Colonial histories. But the days can be very long when visitor numbers are down. And despite wonderful volunteer events, it’s not my passion.

I tried volunteer dog walking. But the dog didn’t like me, and remembered the first time I caught his skin in his harness. He refused let me put his lead on, causing difficulty for his frail, vision-impaired owner.  So when she had a fall and the dog was cared for by relatives, I gave it away.

Volunteer gardening was the next attempt. This one I really love. The gardeners are a great group of people, many of whom have been helping for years, and it’s good to have my hands in the soil. It’s wonderful to see bedraggled, overgrown gardens come to life after we weed, prune and mulch. But somehow, other things get in the way, and my attendance has become erratic. So, it’s not a passion.

I really enjoy yoga, and walking – especially in the bush, and I do both regularly, but although they keep me fit, they aren’t passions.

So what am I passionate about?

Many years ago, when I was deciding on a career, I wanted to do an arts degree. The wisdom of the time (late 60s) was that an arts degree would lead nowhere and I would get depressed if I did social work. A science degree was the obvious answer. Not. From the sheltered world of an all female private school (from the age of 4) to the world of lecture theatres and laboratories of hundreds of students from all backgrounds, I experienced extreme culture-shock. These days, I’d have done a gap year first and become more worldly-wise before those three years of confusion and emotional turmoil. But science did provide a pathway to Nutrition and Dietetics, which wasn’t widely known about or practised then. I was fortunate to enjoy a career as a dietitian for over 30 years. But I always swore I’d do the arts degree one day.

When I retired, there was nothing stopping me. I completed the paperwork, waited along with the HSC students, and was offered a place at Sydney University, not long after my son had graduated. I planned to study English literature and philosophy, but soon found that in-depth analysis of novels spoiled my enjoyment of reading, and Philosophy tutorials were full of angry young men with huge egos. But when I sat in those old lecture theatres, where thousands – including a grandfather I never knew – had sat before, listening to and being challenged by new ideas, I felt that I had come home. I had been searching for this place for almost 60 years.

My son advised me to try Studies in Religion. I’d had a couple of religious phases in my life, but this was not theology or comparative religion, but about religion in people’s lives.  I learned a bit about major religions, New Religious Movements and resurrected and reinterpreted older practices. Can surfing be a religion? Or following a football team? And what is religion anyway? It was a mix of sociology, philosophy, art and more. A true classical education. The young students accepted and befriended me, the lecturers were erudite and taught well, and the subject matter was fascinating.

I had hoped to do honours, but my husband’s health, the cost, and the desire to spend some time travelling, all combined to  lead me to finish after my undergraduate degree. But if the heady days of the 70s with free education were to return, I’d be back in flash. Because what I am passionate about is learning, and sharing knowledge.  I remember in primary school, when other kids were fantasising about ponies and dolls, I longed for a sound-proof box so that I could get on with my classwork without distraction.

I love writing essays, refining ideas and tweaking words and sentences until they read and sound right. I love the light globe moment when a new idea is revealed, or a difficult argument becomes clear. I love the research when one paper leads to another, and then another in an endless chain of ideas. And I love the cut and thrust of argument in tutorials.

At the museum recently, when I was telling a visitor about some of the practices of out First Nations People’s, supporting the information with images from an iPad, he commented that I was an academic. I replied that I’d spent my career in the health system, not the Academy. “But you are an academic.” What a compliment!

So I have identified my passion. I lack the self-discipline to study alone without the deadlines of tutorial presentations and essays, so my challenge now is I have to find the best way to put my passion into practice, not just to avoid the Big A but to enjoy life.

 

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Surprised by meringues

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Despite the scores of cookbooks, magazines and websites devoted to recipes, when it comes down to it, the food we eat at Christmas is all pretty much the same. Turkey, ham, seafood; salads or baked vegetables. Followed by pudding, trifle and/or pavlova. Maybe a barbecue or a picnic. We tweak the recipes or stick to the tried and true; but viewed pragmatically there isn’t a great deal of variety from home to home and from year to year. Sharing food at Christmas is far less about the food served than the memories and ritual attached to it. Until relatively recently Australians continued to recall “home” – the land their forebears had come from – by serving heavy, hot meals totally inappropriate for the Antipodean summer, even if they had never travelled outside Australia.

When we were invited to Boxing Day lunch at a neighbour’s home, we didn’t expect anything different. We were greeted with nuts, cheeses and nibbles, moved on to turkey, ham and chicken with potatoes and salads. Followed by Christmas pudding and pavlova. All delicious and accompanied by good wine and good conversation, but it was similar to what we’d eaten the day before.

Then something unexpected appeared; a plate of home-made meringues, tinted pale green and topped with Hundreds-and-Thousands. Immediately I recalled the meringues my mother used to make. Identical in appearance except for the colour – hers were white or coloured pale pink with cochineal.

You may know that meringues come in two types – the dry and the sticky.  I suspect that kitchen wars are waged over which are the “real” meringues. I was bought up on the less common sticky variety.  So, despite their enticing appearance, I was prepared for disappointment. But one bite of the small green treat transported me to my childhood. Memories of my mother came flooding back. She had routinely made meringues not only when we were young, but for all her grandchildren’s birthday parties, carefully transported in her green Tupperware bowl. First Alyse, then Peter, followed by Jamie and Eve; all their friends were introduced to “Jeannie’s meringues.”

I babbled incoherently about memories of my mother, about the sweet, sticky meringue bringing tears to my eye. The woman who had made the meringues wasn’t even there. I hope they told her how much pleasure they gave not only me, but also our daughter who tasted them and the others who saw the photos. Poor Ron, for whom the meringues were intended, didn’t get a look in as the left-overs were pressed upon me.

My unexpected experience reminded me that much food is more than sustenance. It is loaded with memories and emotion. These days meals are routinely recorded on Instagram, but it is the rituals associated with food that give it meaning. In our family we have “Christmas ham” and “Jeannie’s potato salad” (as well as the meringues). My mother’s hand-written, butter-stained cookbook includes recipes for “Joan’s Christmas pudding”, “Buzz’s biscuits” and “Henny’s scones”. I still cook some of these; others are only recalled when something unexpected happens – like the appearance of the green meringues.

Christmas food triggers memories of happy Christmases and sad Christmases; of relatives who got drunk and relatives who fought; games of cricket in the backyard and post-prandial naps. However many recipes we read, however we fuss about dressings and desserts, table settings and bon-bons, what we are really trying to do is to recreate memories of childhood, family and friendship.

The difference between my Christmases and yours is not the glaze on the ham or the dressing on the salad, but the memories they recall and recreate. This year the green meringues, shared with neighbours and strangers, were my unexpected Christmas memory.

 

 

Satisfying my inner mermaid

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They tell me I could swim before I could walk. Well, that’s how I remember it. No doubt it’s an exaggeration, but there are photos of me, a chubby 1950s baby, sitting up and photos of me swimming in my father’s arms, but no photos of me walking.

We grew up near the beach, and when most of my classmates were at Sunday school, we were swimming. While Mum dealt with my “difficult” younger brother, Dad would take the neighbourhood kids to the beach. Later, thanks to a win on a horse, they bought a weekender at Whale Beach, in those days right on the fringe of suburbia. Weekends and school holidays were spent in the water, on the sand, or roaming the rocks and sandhills.

So although my late January birthday makes me an Aquarian, I think it is my childhood rather than the power of the zodiac that made me a water baby. I was clumsy on land and hopeless at sport, but in the water I felt free as I dived through  waves or turned somersaults under water. I surfed too, initially using a surf-o-plane, later learning to body surf. One winter I even raced at the swimming club every Sunday, but what I enjoyed most was simply playing in the water, imaging myself as a mermaid.

Years passed; I married a fair-skinned non-swimmer, gave birth to a fair-skinned son and a less fair-skinned daughter, nd ended up living in the suburbs, with trips to the beach a rarity. We had a backyard pool, which compensated somewhat, but each summer I became filled with with an emptiness – a longing for summer days spent swimming in salt water, drying out in the sun. Nonetheless, the prospect of driving for at least half an hour, finding a parking spot and then getting hot and bothered on the drive home meant that I usually procrastinated. Summer would turn to Autumn, the emptiness would dissipate, and my inner mermaid would leave me alone for six to eight months.

I expected that, despite my resolutions, this summer would follow the same pattern. Then I read that parts of the Parramatta River had been declared safe for swimming. The factories that had used it as a garbage dump have been replaced by designer apartment blocks, and whatever remediation was deemed necessary has been carried out.

Three days later I was testing it out. Ten minutes’ drive and a short walk through a park and I was at Chiswick Baths, a small netted enclosure, providing me with a chance to swim in salt water. It wasn’t crystal clear, but it was cold and salty and refreshing. I swam, I floated, my spirits soared. For the first time for years I will be able to swim regularly as often as I want.

This summer my inner mermaid will be satisfied.

Fasting for Dracula

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Disclaimer: I wrote this before the recent events in Beirut and Paris. I am aware that this is insignificant in comparison.

I’m an early to bed,  early to rise person. Although these days rising usually means getting up, feeding the cat, making coffee and toast and taking them back to bed. And with sunrise at roughly 5.45 a.m. and first light some twenty minutes earlier, coffee can be any time after that. So when the doctor said it was time to do fasting blood tests my heart sank. Because I know from experience that the two hours between six and eight can seem endless when I am denied my toast and coffee. Usually when fasting blood tests are recommended, I procrastinate and procrastinate until the form is forgotten.

But a neighbour had a stroke last week, giving our close community a scare, so I have decided that it is time to be responsible and accept that I am no longer a svelte forty-something with perfect health.  With great resolve, I earmarked today as “Hunger Games” morning. Even though I had gone to bed later, I still woke with the light. Tempted as I was to follow my routine,  I fed the cat, had a glass of water and returned to bed.  Somehow I managed to shift myself into the zone you enter when you are travelling when time takes a completely different trajectory. I caught up with social media (restraining myself from making comments which may have been the result of hunger rather than logic) and  played a few mind-numbing games until I decided  that it was time to shower and begin my slow walk to the pathologist.

I have learned from experience that the early arriver gets the short waiting time, so I aimed to be there at 7.45. I enjoy walking early in the morning and wonder why I don’t do it more often. The streets have a different feel as people are walking their dogs, running to the bus stop, hosing their gardens and shouting at their children to get in the car. I passed my favourite cafe, looked longingly at the espresso machine, but kept walking and arrived on schedule, only to find three people already outside the door. I asked one fellow if he was the end of the queue and he said “sort of” so I stood next to him and pulled out my book.  A few pages later the crowd was growing, so being keen to keep my position in the pecking order, I moved closer to the door.

Then a staff member arrived, the door was opened and we were instructed to take a number and wait. Once again the travel analogy sprung to mind as we jostled for prime locations in the rows of chairs. One by one our numbers were called, our paperwork was checked and we were asked if we were fasting – or,  for the older Italians,  “no brekkie?” The receptionist was good humoured and patient considering the early hour and the repetetive nature of her job. I reflect that most people who work in blood-collecting agencies seem pleasant, apart from the one who told my young daughter that she could not lie down: “people don’t faint for me.” Surprise, surprise she did, and they then had to spend twenty minutes feeding her sweet tea and jelly beans until they decided that I could take her home.

The blood collectors began calling us – struggling with the names of people from different cultural backgrounds. In almost no time it was my turn, my ID was checked again, the blood was taken and I was on my way to breakfast (at the favourite cafe).

I had survived two hours of hunger – a very first world, middle class ordeal.

Hating Halloween – (not)

Australians of a certain age delight in hating Halloween. They usually complain that it’s another example of encroaching Americanisation (even though it’s not) but I suspect that deep down it’s because it wasn’t part of their childhood. Towards the end of October, as pumpkins and cobwebs appear in shop windows and on fences, trees and verandahs, they begin their tut-tutting on talk-back radio and social media.

Far from being yet another greedy American custom, Halloween has its origins in the festival of Samhain, the beginning of the Celtic year. According to Celtic tradition, this is the time when the dead walk among the living; a time of fairies, ghosts, demons and witches.  (http://www.druidry.org/druid-way/teaching-and-practice/druid-festivals/samhain/deeper-samhain)

Just like Christmas and Easter, the Celtic festival was appropriated by the Christian Church, with November 1st becoming All Saints’ Day, and October 31st All Hallows Eve. In the United Kingdom the tradition of going house to house in costume can be traced back several centuries, although the expression “trick or treat” is usually linked to America in the 1920s. A Scottish colleague describes dressing as a witch and going to neighbours’ houses where they were given home-baked treats and money to buy fireworks for the upcoming Guy Fawkes Day.

As I listen to my peers complain about Halloween, I wonder what sort of childhood they had. I suspect that they enjoyed cracker night, when they could let off fireworks, often unsupervised  – and sometimes in neighbours’ letter boxes. They could roam the streets and the neighbourhood bush,  play cricket on the roads, and have fun with their friends after school without needing  a “playdate.” Weekend sport was not prohibitively expensive and you would swim all day without applying sunscreen every two hours. There were no helicopter parents or fear of stranger danger; you  knew your neighbours.  This was not necessarily safer or better, but it meant that kids had a certain autonomy and spontaneity which appears to be lacking today.

Halloween is pretty well over and done with in one night. A few days later, many of the complainers will be having Melbourne Cup lunches and sweeps (often in their employers’ time), prior to starting the ever-lengthening round of Christmas parties with their (possibly American influenced) Kris Kringles.

So if kids want one evening of spontaneous fun, complete with costumes and sugar overload, I say go for it. But lets teach them to do it with respect for their neighbours and without a sense of entitlement.