Authors: Mary Moody
As I grow older I appreciate that good health is more important than beauty or fame or wealth. I have been lucky to have been pretty healthy for most of my life, but when I do fall ill the results tend to be dramatic. There was the bout of viral meningitis I succumbed to when Miriam was just a baby. I was in my early twenties, and working full time, when I woke in the middle of the night with the most devastating headache. I don't normally get headaches, even after a wild night out. David called the doctor who immediately recognised the symptoms, and I was in intensive care within the hour and then flat on my back for two weeks until I was able to lift my head from the pillow.
Mysteriously, I had two further bouts many decades later. The first was in 2000, only months before I went to France on that first adventure, and there was another the following year. Both episodes were frightening, and the doctors, including a specialist immunologist, were perplexed at how a normal, healthy woman could experience three episodes of the same virus in a lifetime (although I believe there is a syndrome of recurrent viral meningitis which is now quite well documented).
David believes that because I am a high-energy person, always on the go, always having unrealistic expectations of myself, and always âoverachieving', I push myself and push myself and then fall in a heap. I am sure there is an element of truth in this theory. There is also the inescapable factor of ageing. From the age of fifty we are more susceptible to conditions such as arthritis, high blood pressure and type 2 diabetes. Exercise and a good diet help to keep problems at bay, but nevertheless more and more of us discover ailments that may have been lurking in the background for some time.
When
The Catch-Up
was laid to rest, David was in the UK working on projects after his annual trip to the Cannes Film Festival, and I had to fly back to the farm and get on with my life alone. The country around Bathurst was experiencing bitter mid-winter weather, but I didn't mind. I secretly relished the idea of some total peace and quiet. Indeed the prospect of solitude had never appeared so appealing before. I set myself up in the kitchen at the farm and started writing my family cookbook. It was early June and very cold, so I lit the wood cooker and moved my computer onto the breakfast table so that I could get down to writing in earnest. It was such fun, after the pressure of television, to delve into old photograph albums, lingering over the task of selecting pictures, and searching through my mother's cookbooks and collection of recipes to find old favourites. It was strange having to write the recipes down, as so many had been learned at my mother's side, and I had never bothered to measure ingredients or take a note of the cooking time. It had all been done by feel and instinct rather than science.
Writing was a form of therapy, comforting after the whirlwind of the first half of the year. I set myself a deadline of late July to finish the work, and booked myself a return ticket to France, where I planned to have a little downtime in August and September, as well as picking up the threads of a second book I had started writing but put to one side because of the television show.
Before I flew out, I was feeling a bit rundown and lacking in energy. I also noticed that my mouth was always dry, and suspected I was dehydrated.
I increased my water intake, jumped on the plane, and fled to my village house where I was welcomed by my usual contingent of friends, and immediately swung into a busy round of socialising â lunches and dinners and afternoons sitting around quaffing rosé and talking. The weather was hot, and I was walking a lot, so my feeling of dehydration continued. One night I woke in the early hours to discover that the inside of my mouth had adhered to my gums. I literally had no saliva in my mouth and no matter how much water I drank I still felt as though my mouth was, to use that delightful Australian phrase, like the bottom of a cocky's cage.
Next morning I opened my computer, checked my emails and then typed
dry mouth
into a search engine. There were hundreds of websites but the ones that leapt out at me were those on Sjögren's syndrome, an inflammatory disease of the autoimmune system that mostly affects women and usually presents in the forty-five to fifty-five age group. The causes are unknown, but there is evidence to suggest that viruses, including meningitis, can trigger it. Hah, I thought, it was all adding up. I quickly read website after website; the more I read, the more depressed I became.
The two main symptoms of Sjögren's were reportedly dry mouth and dry eyes. It dawned on me that my eyes had been feeling dry and gritty of late. It seems that the glands that provide moisture to the eyes and mouth become damaged by inflammation and cease working properly. The symptoms are uncomfortable and irritating, but are usually manageable with eye drops and mouth gels. Extra dental care is recommended, because without a constant flow of saliva, the teeth and gums are at greater risk of developing problems.
The medical websites went on to detail some of the rarer and more sinister complications of Sjögren's. Some patients developed systematic
lupus erythematosus (attacking joints, kidneys and skin) and rheumatoid arthritis. Great. One site described it thus:
They also reported that a percentage of Sjögren's sufferers went on to develop lymphoma, cancer of the lymphatic system. I suddenly realised I had another connection with this condition. Years before, when we were living in Leura, we had âweekend neighbours' who became very good friends. Audrey and Barry had transformed their plain fibro cottage in a ramshackle garden into a small timber bungalow in typical Blue Mountain's style; the garden had also blossomed under Audrey's tender loving care.
We often chatted over the fence while pulling weeds or shovelling compost on a Saturday or Sunday, and always got together for a drink when our day's work was done. One afternoon, while I was having tea with Audrey, I noticed she was having trouble talking because her mouth was so dry. She used a spray, and explained to me that she had a syndrome that affected her saliva glands and tear ducts. It was irritating but not really much of a problem, she said. I didn't think too much of it.
In time, they sold their house and bought another property in the Mountains, and we no longer saw much of them. Out of the blue I had a call from Barry at their Sydney home. Audrey had just undergone surgery and chemotherapy for lymphatic cancer; she would love to see me if I was coming down. I visited a few weeks later, and found that although her spirit was still strong, she seemed very weak. I was
shocked: my friend had always been such an active, energetic woman, slaving for hours non-stop in the garden. Audrey mentioned that the cancer was connected to Sjögren's syndrome. Sadly, after a period of remission, her cancer overwhelmed her, and she died within two years of the diagnosis. David and I were deeply saddened as we had loved Audrey, and we knew how devoted Barry was to her.
Siting alone in France in front of my computer, I felt anxious and fearful. I needed a medical opinion.
Madame Coppe is the popular local doctor in a nearby small rural town, and although her bedside manner is abrupt she is renowned for her knowledge and diagnostic skills. I went to see her, detailed my symptoms and neatly informed her of my self-diagnosis. She smiled knowingly and made a slightly disparaging remark about patients using the internet for medical advice. But after a brief examination, she confirmed my fears: I did indeed have Sjögren's. She did not appear overly alarmed, and simply wrote out a list of various medications, gels and eye drops that would help alleviate the symptoms. She also suggested that I consult my GP on return to Australia and have some tests to eliminate the possibility of further complications.
My initial reaction was one of shock, mingled with something like anger. I didn't want to have
any
illness, especially one with such uncomfortable symptoms and the possibility, down the track, of much more serious consequences. The idea of developing cancer certainly frightened me: four percent of people with Sjögren's develop lymphoma, a rate considerably higher than among the general population.
I phoned David and tried to describe what was going on without alarming him, which was difficult because any illness tends to make him very anxious. I also emailed the children to let them know, and told several of my friends in France. I decided that if my immune system was under assault the best thing I could do was to lead the healthiest lifestyle possible, which meant drastically cutting back on my consumption of wine. Needless to say, my drinking cronies were startled and somewhat
regretful at this development. I kept returning to the internet for further information. The word âincurable' seemed to leap off the screen, and while I knew my condition was by no means a death sentence, some of the implications were so serious I couldn't stop thinking about them.
But it's amazing how quickly we humans adjust to changed circumstances. After a few days I stopped researching Sjögren's because I recognised that every time I went on the internet it was just causing me worry. After a week I simply ceased dwelling on the diagnosis â except when when my eyes and mouth became extremely dry during the night. Soon I decided that there was no point dropping so many of the things I love about living in France â the food and wine in particular. There were a lot more important and pressing things going on within my family back in Australia, and it helped me to gain a more balanced perspective about my own situation.
Nevertheless, when I returned home in late August I made sure I consulted my local doctor and had a battery of tests to check the status of my immune system and my kidney function. The results were fine. There were no signs of any further progress of the disease â I was pronounced healthy.
The final upshot is that I have to take extra care of my teeth by having regular check-ups and cleaning. My eyes react badly to cold and wind, so I should wear protective goggles when I go out in the garden early in the morning. And I anticipate annual blood tests will help with early diagnosis of any further developments.
Plenty of worse things can happen in mid-life, but being diagnosed with Sjögren's made me think long and hard about the next few decades. Shall I be a healthy older woman, exercising and working hard in the garden and cooking up family feasts when the tribe descends? Or will I be sickly and frail and beset with medical complications that compromise my active lifestyle? My philosophy is that I should just continue living my life as I have always done â at full throttle. I could ease back, become a health fanatic, meditate, experiment with alternative therapies
and join a support group. Yet there's no proof that it will make much difference in the end. If my disease progresses it will undoubtedly do so regardless of what efforts I make to control it. I prefer to think positively and have as much fun as I can in the knowledge that whatever happens, even if I get run over by a bus tomorrow, I've had a fantastic, full and happy life.
On the day that the blood from my mother's aortic artery started leaking into her chest cavity, she was stoic and silent. Our son Ethan, then sixteen, confronted her in the late afternoon and asked if she was feeling all right.
She responded, with some irritation, âNo I'm
not
all right. I think I'm dying. But don't tell your mother. She'll be upset.'
It's the story of my life. Well my adult life, anyway. My family protects me by skirting around plain truths that may upset me.
Am I so fragile, so vulnerable, that people close to me avoid telling me their problems? Are they so frightened of bursting my bubble and shattering my illusions that they think it's better to keep me in the dark?
I am an optimist, but being a positive person can have a downside. Always being cheerful, being up and happy and on top of things, can close the door to the possibility of acknowledging the darker, more difficult aspects of being alive.
I always imagined I was open and down to earth. That I invited conversation and discussion and debate from those around me. I believed, quite vehemently, that I encouraged my children to talk at the
dinner table and to be quite frank and honest in expressing their views and their thoughts and their perceptions. I recall priding myself on the fact that our children never complained or demanded. They didn't whinge for the latest toy; they didn't come home from school in tears because of a playground squabble; they didn't moan (well, not very often) about their teachers or the injustice of their school system or the bully on the bus. They just got on with their lives.
Other people's children were quite different. I knew one couple who made an appointment to mediate with the parents of a child who had a lunchtime spat with their daughter. Both girls would have been nine at the time, and the dust-up had been over some trivial matter but had escalated into a full scale slanging match. On another occasion a mother phoned me to see if Miriam was OK after a heated row with her best friend (the woman's daughter). The other child was in shreds, inconsolable. Miriam was cheerfully playing in the backyard with her brothers. She hadn't made mention of the dispute at afternoon tea, and she didn't look even slightly ruffled. When I questioned her about the fight she just shrugged. âIt wasn't anything much,' she said. I wondered what all the fuss was about.
My children didn't tell me if they had been in trouble for forgetting their homework. I expect by the time they got home from school they had just forgotten. They didn't tell me about detentions (unless there was a note I had to sign) or about being kept in at lunchtime or being sent to the headmaster for some act of bad behaviour. I'm sure these things must have happened from time to time, but I never heard about them. By the same token they often forgot to give me school notes or to notify me about forthcoming excursions, and they always,
always
announced that they needed a special costume for some performance at the school assembly ten minutes before they were due to leave the house and catch the school bus.
It didn't occur to me that my children were particularly secretive or that they were protecting themselves from getting into trouble by
not reporting various aspects of their lives outside the front gate. I just thought they were normal children, so caught up in their own world and so preoccupied and disorganised that these ripples in their daily lives were just that. Ripples.
So much of that period of their lives is vivid to me. Their glowing, healthy skin and thick, tangled hair. Morning hair-brushing was always a struggle. The kids' gangly arms and legs and skinny shoulderblades, poking out pathetically in spite of the fact that they devoured every meal as though it was their last. Their wobbly baby teeth replaced by oversized teeth always in need of a good scrub (another source of my nagging). It was certainly the most carefree period of my life, when the children were young and full of life and energy and very much, I believed, under my control and protection. I saw myself as a mother hen. Not a fierce and protective mother hen on the prowl for predators and ready to attack anyone glancing sideways at my clutch of chicks. More the warm and plump mother hen who spread her wings every night and invited the chicks to snuggle up, safe and warm.
No parent can know everything that happens in the life of their child. It isn't possible to be with them twenty-four hours a day, watching over and protecting them from possible dangers. But it is possible to be in tune with them. To read the signs and signals that tell you things are not quite right in their world. It is possible to keep an open line of communication, never broken, allowing them to tell you if things are troubling them. Or so I thought.
There was a local parish priest who ran an after-school gym for primary school children, and my children were very keen to join in with their friends. Two hours every Wednesday from 3.30 until 5.30 pm. A great break for the mums and a chance for the children to burn off some of their boundless energy.
Miriam and her three brothers went with a handful of their classmates and at the end I was waiting to pick them up. They tumbled into the car, full of noise and excitement â all except Miriam, who was
unusually quiet. Later that evening, after dinner, I asked her how she'd enjoyed Kids' Club, as it was called.
âIt was OK but I don't think I want to go again,' she said.
âWhy not? Wasn't it fun?'
âI don't like that Father Tom,' she said. âHe squashed me on the mat.'
âOh well, you don't have to go if you don't enjoy it.'
Now what could be a more descriptive danger signal to a parent than that?
He squashed me on the mat.
I knew that Miriam wasn't at all sporty â in fact her bad eyesight and glasses had made sport a bit of a nightmare which she chose to avoid at any cost. So I dismissed it as that. She didn't like all the gymnastics and tumbling and the roughness of the boys.
Eighteen months later Father Tom disappeared from the community, and soon afterwards was charged with molesting young girls. It would seem the Kids' Club was one of places where he most frequently committed these offences. He obviously hadn't got very far with Miriam, but that's not the point. I was her mother, her confidante, her protector. She had told me quite clearly that something unpleasant had occurred and I had, for whatever reason, chosen to ignore it.
It gets worse.
Click forward to August 2007, the time I spent in France, ostensibly working on a new book but also having a break after those five exhausting months on
The Catch-Up
. Like a bolt from nowhere came an email from Miriam that alarmed and upset me.
More than six months had passed since she and Rick split up and she appeared, to me, to be coping extremely well. Too well, in many ways. I knew she was having counselling, and I thought it was a good idea. I hoped both of them were having counselling â maybe even marriage counselling. The email she sent that day was, she said, part of her âhomework'.
It was angry. Reproachful. In brutal terms she told me that from the
age of eleven until she turned fifteen she had been sexually abused by a teenage boy in our neighbourhood. Not every day. Sometimes not for months at a time. But random attacks of sexual violence that included biting and digital penetration.
She had hidden it from me. She didn't want to cause a problem for me or our family or for the family of the boy involved. She just put up with it and tried to avoid him as much as possible. She avoided being in situations where she was alone and developed strategies to protect herself as much as possible.
I was there all the time. I worked from home. I cooked dinner every night. I talked to my kids. I knew their teachers and went to endless P&C meetings. I worked in the school canteen and helped with fundraising. Encouraged sport and music and never missed a concert.
Why didn't I know this was happening under my very nose? Was I so caught up in the appearance of being a âgreat mother' that I simply didn't connect with them on a deeper, more personal and, quite frankly, more important level? Didn't Miriam trust me enough to tell me? Did she think I wouldn't believe her? She apparently had bruises and bite marks and other visible signs of abuse. She could easily have shown me. I would have believed.
The story doesn't end there.
Some years later, when she was the mother of four boys herself, Miriam actually told me about these attacks. Not in graphic detail, although she made reference to having been âjumped' by a boy at the bus stop after school. This wasn't very long ago â maybe five years; we were sharing a glass of wine and reminiscing about the âgood old days' when Miriam and her brothers were growing up. She talked about being an awkward, gangly teenager with braces and glasses and painfully thin legs. Then she told me that this particular boy had often pounced on her. I must have closed the conversation down or moved on to another topic. I can remember her telling me, but at the time nothing untoward about the situation registered in my mind.
Head in the sand. Head in the sand. No wonder she was angry with me. I wasn't there to acknowledge her pain when she was a child, when she was being attacked. And years later, when she told me, I just glossed over it. Was I incapable of admitting that bad things happen and they can very easily happen close to home? Was my rosy, naïve view of the world another symptom of my âfantasy life'?
I phoned Miriam from France in the middle of the night. We both cried.
âWhy didn't you tell me?'
âI did. I told you.'
âYou did, I know you did. I remember the conversation now but it honestly didn't impinge. Why on earth didn't you tell me at the time it was all happening?'
âYou didn't give me permission to, Mum. You never wanted to hear anything bad.'
I feared her observation was accurate. I didn't want my life to be touched by anything negative.
My phone conversation with Miriam left me in a sombre and reflective frame of mind.
All I had ever wanted was a big, happy family. I was wedded to the whole rose-covered cottage and picket-fence notion of family life. A vegetable patch, chickens scratching in the backyard, bread baking in a fuel stove, vegetable soup simmering on the hob and rosy-cheeked children running in from the garden for afternoon tea. Grandma knitting by the open fire and perhaps a basket of kittens purring nearby.
Well, that's what I created. Consciously, and with plenty of hard work and love and humour, I made this fantasy real. I believed in this lifestyle explicitly and implicitly. In a funny way, for an atheist like me, it was my religion. It defined who I was, and where I stood in life.
Now, alone in my house in Frayssinet, feeling unwell after my diagnosis, and desperately worried about my daughter, I wondered if I had been kidding myself. For some time, I realised, I had been living
at odds with my dream. It started to unravel when I first ran away to France and experienced a tantalising moment of freedom from my perfect life. I was happy to come home to the warm bosom of my family but there was no doubt a certain restlessness had set in. I had itchy feet, and uprooted David from our home of twenty-five years to live further west on a small farm. I went back to France, fell in love with another man, and created havoc in my happy home. I thrashed around for several years, unable to decide what I really wanted from my life.
When I was forced into a corner and had to make a decision about our future together â whether I would remain married to David or leave and make my own way in the world â my love of family unity was by no means the only reason I decided to stay. I had taken a long hard look at my marriage and reached the conclusion that there was enough love left to repair the damage that had been done. But the happy family environment I had created around David and the children was an important part of my decision. I wasn't going to repeat the mistakes my parents had made. I believe we either unconsciously follow the patterns of our parents or deliberately set a different course. In David I had chosen a partner who was very different from my father â sober, faithful and careful with money. I had tried to avoid being like my mother in most ways, avoiding the constant arguments that punctuated her relationship with my father. I was a peacemaker rather than a battler. The atmosphere in my childhood home was unwelcoming to visitors and I rarely had friends over to play or socialise. I had been determined to make a home where the children would feel comfortable inviting their friends to stay, and especially during their teenage years the house at Leura had become a refuge for a floating population of youngsters.
Yet I was well aware that there were certain facets of my parents' personalities that were hard-wired into my character, despite my best efforts to avoid them. Just as blood is thicker than water, genes can triumph over even the best intentions.