jmgoyder

Most people associate Parkinson’s disease with the tremors, the shaking hands and the wonderful Michael J, Fox who continues to lead, and fund research into this strange disease.

I began to notice how much difficulty Anthony had in, for instance, opening the jar of vegemite at breakfast. He also started to shuffle rather than walk and he became even more stooped than he already was. It was subtle and insidious and odd.

On my days off from work, Anthony would ask me to drive him to wherever he needed to go and one day, during our drive to a doctor’s appointment about his diabetes, I lost the plot.

Me: Why the hell can’t you drive yourself? Why do I always have to be with you every second of every day of my days off from work?

Anthony: I don’t think I can drive any more, Jules.

Me: Why not?

Anthony: It was that one-way street incident in Perth when you panicked.

Me: Well you made a wrong turn – what was I supposed to do?

Anthony: I’ve lost my confidence.

Me: And that’s my fault?

We had parked at the doctor’s office and I was now crying with frustration and remorse at being so horrible to Anthony, but I was so annoyed! I could see that I had hurt him but he was, as always, nonplussed and, strangely, blank.

Once were in our doctor’s office, and the diabetes solution reached, I let my tears out and described how Anthony now refused to drive and I had just found this out. Anthony quietly conceded that this was true. My car-mad husband could no longer drive.

“It’s possible that you may have a form of Parkinson’s disease,” our doctor said to Anthony.

What?

Sometimes you don’t know how strong you are until you get the wind knocked out of you a few times and you develop a way of bouncing back up. That’s what happened to us – to Anthony and me. One devastating diagnosis after another, year after year, we bounced back up. Well, I wasn’t the one who was ill of course but the emotional impact on me was huge.

The hardships we had endured and Anthony’s deteriorating health seemed to make our relationship even stronger than it already was. The joy we had in each others’ company was quite magnificent and was still there the moment he died. It’s still there now and I can summon it any time I want to – a gift that never loses its shine.

We made each other laugh. A lot. And loudly, until Anthony’s voice became a whisper. My guffaw became enough for both of us. There was much more joy than pain and Anthony’s incredible resilience and uncomplaining acceptance of his illnesses was remarkable to me.

Bouncing back up. Unbreakable. Us.

I married a robust, healthy macho machine but this very quickly changed. Anthony began to succumb to one disease after another. Good friends laughingly suggested that marriage didn’t agree with him. I, too, laughed through my tears of empathy when Anthony was diagnosed with a kidney cancer that entailed two operations because the first one erroneously deemed the tumour benign.

For richer or poorer and in sickness and health: I was prepared, but not prepared enough. In marrying someone 23 years my senior, I knew that one day in the far future he would be old and I would still be relatively young. I didn’t forsee the illnesses and I certainly didn’t forsee Parkinson’s disease dementia.

The deregulation of the dairy industry was a terrible blow but Anthony had already retired by then and we had a contingency plan. I think it was more the way the dissolution of his partnership with the younger brother affected him. It wasn’t just the fact the Anthony was put into a situation where he had to choose between his wife and his brother, it was also how the many years of waiting for his brother to sign the dissolution, that he himself (brother) had orchestrated, began to take its toll on Anthony’s health.

Anthony tried so hard to please his younger brother, financially and emotionally but our marriage was still deemed a kind of scar and still is.

Was Anthony’s Parkinson’s dementia exacerbated by the above? Yes.

It killed him.

Under the tutelage of Gar, I gradually learned to cook things like underdone scrambled eggs and salmon mornay on Anthony’s brand new Aga. He had bought this beautiful, bright red stove the year before I came into the picture and it was his pride and joy.

Every day, sometimes twice a day, he would polish the Aga which is why, to this day, it still looks new. It ran on kerosene and it was always on, warming the whole house. There was a boiling hot plate and a simmering hot plate, a roasting oven and, underneath, a slow cooking oven.

Anthony had some very strict rules about how to use the Aga which included not frying any food likely to sputter, never heating up milk, never leaving anything to boil unwatched, and definitely always cleaning its surfaces after cooking anything.

At the time the farm had a small orchard with several orange trees and a couple of grapefruit trees. One day, Gar decided to teach me how to make grapefruit marmalade. I wasn’t particularly excited about this idea until she said that Anthony loved it.

So we ventured out to the orchard, Gar with her walking stick, and me with my eagerness, and picked four grapefruit. Once back in the kitchen, Gar instructed me on how to cut up the grapefruit, how much sugar and water to add and I placed all of this in a large saucepan on top of the boiling plate of the Aga.

Anthony didn’t know we were doing this as he was milking the cows. I helped Gar to her bed for her afternoon nap and returned to the kitchen to watch the marmalade. After about half an hour, when the mixture still hadn’t boiled, I decided to go over to the dairy and fetch some milk.

As always, on seeing me with the milk billy, Anthony yelled “Jules!” and, as always, I fought the temptation to swoon. “We have a surprise for you,” I said shyly as he used a scoop to swish milk into the billy.

He grinned.

On returning to the house I was greeted with a strange smell and as soon as I entered the kitchen I realised with horror that the marmalade had boiled over and its syrupy overflow had not just soaked the top surface of the Aga but had bled into the hotplates.

The sense of panic was terrible. At any moment, Gar might wake up and in exactly an hour Anthony would be finished milking. I did my very best to clean up but the burnt sugar smell still permeated the house when Anthony came in.

He was not forgiving as he took the top of the Aga apart to clean the damage. Gar got up and frowned at me. I said the word ‘sorry’ a million times then got on my bicycle to ride home.

It was several weeks before I received another grin from Anthony.

Sometimes I have to go back in time in order to remember the sequence of events but, after the Bill escapade, Anthony and I became engaged. I have no idea how other people’s engagement stories pan out but ours was a bit fraught.

We had told my mother and a few friends but we hadn’t yet told Anthony’s younger brother with whom he shared ownership of the farm, the brother with four gorgeous blonde-headed children, and his wife, my confidante.

I didn’t understand why Anthony felt it necessary to take a case of champagne over to J’s house to announce our engagement but my qualms were disguised by our sharing a bottle on the way. Anthony’s nervousness was palpable and it sort of leaked into my joy; I felt very confused.

We hadn’t warned them of our visit and they were just about to have lunch. And there were even some friends there. Our announcement was met with great joy and excitement and, of course, surprise, perhaps even shock but overall it was a relief to have the implicit blessing of this family who I had loved for so long. I noticed, but decided to ignore, that Anthony’s younger brother, J, had gone pale and left the house.

I am not sure if Anthony noticed his brother’s abrupt exit as we were all a bit champagned by then. But the following morning, this younger brother came over to the farm and said to Anthony:

“If you marry her, we are finished.”

The man, Bill, who had convinced me to come from Perth to Melbourne with an extraordinary flurry of happily-ever-after promises was waiting eagerly for me at the airport. After so many years of being seemingly un-adored by Anthony, being adored by another man was pretty seductive.

This whole story may have changed route if, on the morning of the day of my flight, roses hadn’t arrived. But it wasn’t just the roses that flummoxed me; it was the rather desperate last phone-call Anthony made to me, within which there was a marriage proposal.

Maybe I should have just reneged on Bill? No, I couldn’t do that; it would have been too cruel! Also, it had been a couple of months since I had once and for all given up on Anthony with zero attempts from him to reconcile. He almost never phoned me so I found his multiple phone-calls to me, over the 24 period before going to Melbourne, bemusing, bewildering and slightly irritating.

So on that midnight flight to Melbourne I wrote everything Anthony had proclaimed to me, during all of those frantic phone-calls, on the back of a large envelope in which I had my writings to show a very interested Bill. I knew that if I didn’t write Anthony’s sentences down pronto I would never believe them.

Anthony begged me not to go to Melbourne and I said, with the tiniest bit of satisfaction, “It’s too late, Ants.”

Melbourne can be cold, even in summer.

Anthony had a green thumb when it came to camellias; they were dotted everywhere around the house and all of them flourished in the dairy farm-fed soil.

About 40 kilometers north of our farm, there was another country town that was home to ‘The Heavenly Gardens’ – a plant nursery specializing in camellias.

At the beginning of this little day trip, I didn’t have the slightest interest in anything green, or pink, or earthy but I humored Anthony by accompanying him. “You already have so many, so why do you need more?” I queried.

But, as our old truck bumped its way up a gravel road into the nursery, I was reluctantly impressed by the camellia-lined route and the stunning forest of camellias beyond.

A tiny, elderly woman, with a stoop way worse than Anthony’s, greeted us and welcomed us into a small shed where her workers were drinking tea. We were offered tea and accepted but, after about 15 minutes I became so bored by the camellia-laden conversation that I wandered off.

And that’s when I found her: a camellia tree planted in the ground with the most beautiful flowers I had ever seen. Each flower resembled a ballerina in full flight. I was smitten.

I ran back to the shed and asked the elderly woman if this tree might be for sale and she immediately said no. She pointed out that it would have to be dug up, that it was a rare breed, that it was unthinkable unless I was willing to pay $400. I looked at Anthony and he shook his head, no! But, against even my own will, I began to bargain and, eventually, I got the price down to $300 which was still a ridiculously enormous price to pay for a camellia tree.

As my tree was dug up and brought to our truck, the workers secretly threw in a few more inferior camellias because they thought I had been ripped off.

When we got home, Anthony planted it and it flowered prolifically for many years, until around the time he became very ill.

And then it died.

Even though, by 1992, Anthony and I had been ‘together’ so to speak, for several years, I had become disillusioned by his reluctance to get married, to commit, to have who I thought of as ‘the dreamchild’, to have each other as more than weekenders.

We fought, we argued, I cried, he shouted, I left and came back, he left and came back, I gave ultimatums, he reneged, I screamed, he shut down, I sobbed, he shut down. We were living 200 kms apart in totally different worlds; he was milking cows, I had begun my PhD.

There was still that solid kernel of our original friendship in my heart when I made the decision to hate Anthony. I gathered all the years of love and screwed them into a metaphorical ball of twisted twine and started going out and about.

During one of these going-out-on-the-town episodes, I met a guy who we will call Bill. I was with one of my best friends and she was flirting with him but I somehow caught his eye. He was on holiday from Melbourne and, drunkenly, asked me to join him there the following weekend, all expenses paid.

Of course I didn’t take this at all seriously but Bill somehow got my phone number and began bombarding me with messages of instant adoration. He even sent me plane tickets to Melbourne for a soon-to-be weekend. At 32, I was still ridiculously naive! But I liked Bill and I was flattered.

The night before I was going to Melbourne, the strangest thing happened: Anthony rang me. The reason this is strange is that he almost never rang me. Due to our recent argument, and my decision to hate him, the chances of him ringing me were slim.

He was making odd sounds which I soon recognized as crying: “Where are you going, Jules?”

I lied and said I was going up north to see my friend; I didn’t want to hurt Anthony’s feelings. To this day I will never know how Anthony knew I was absolutely giving up on him and actually going to Melbourne to be with another man.

His last words on the phone to me before I flew miserably to Melbourne were a combination of sentimental greeting cards and his own version of poetry:

“I will kill him.”

After what seemed like a thousand years, our scrawny little baby reluctantly emerged from the torture chamber he had created in my womb and Anthony, on seeing a penis in large proportion with the rest of our baby’s size, yelled, “It’s a boy!”

It’s difficult enough being pregnant and giving birth, without the pressure of a spouse wanting ‘it’ to be a boy. Would it have mattered? No, of course not, but still – mmm.

After the last ultrasound before Menzies/Ming was born, I pleaded with our doctor to tell me if “it” was a boy or a girl, but he wouldn’t. As the father of four daughters, our doctor told me to tell Anthony to grow up.

Well, 58-year-old first-time fathers can’t usually grow up, so to speak, because they have rather unsophisticated, almost primitive, patriarchal instincts.

If Ming had been a girl, we were going to call her either Jean (after Anthony’s mother), or Meg (after my mother), or a combination, but we only had a single name for the potential boy and that was Menzies/Ming.

I am not sure if it is the photo of Anthony cradling little Ming in his arms, or my memory of it, but it was, to use one of Anthony’s phrases, “bloody beautiful.”

After Ants went home, I stared and stared at this wonderful little baby and could hardly comprehend how he was mine. I held him close to my heart and I could feel his own new little heart beating against my chest and I felt as if the whole of my life had meaning.

And then little Ming began to cry.

After Gar died I was obviously redundant. No longer needed to look after her, I didn’t have a role in Anthony’s life in any pragmatic way. So, once again, and again, and again, I left the situation.

I worked on a sheep station up north; I worked in London as a nanny; I began and finished a nursing qualification; I worked as a waitress at a pancake restaurant; I worked at hostels for people who had multiple disabilities; I worked in nursing homes: I worked in the hospital where I had trained; I worked as a live-in carer for the wealthy mother of an entrepreneur, Alan Bond; I worked day and night shifts at a respite house for the disabled.

And every single second of every hour of every day of all of my working life during this period of time was consumed into a vacuum of despair and hope in equal parts. My whole being was shattered by the fact that Anthony was with this other woman because, by then, he and I had become secretly romantic. At 23, I was no longer too young. I was eager, he was reticent, were both confused. Nevertheless, we started to ‘date’ on the sly.

In a sense, all of my dreams had come true. Anthony and I were now romantically entwined. But he still had the more age-appropriate girl-friend, the other woman.

It took me a few years to realize that it was me who was the other woman.