jmgoyder

wings and things

‘Paradoxical kinesis’

Over the last couple of years as Anthony’s Parkinson’s got worse I would be amazed at how, when anyone visited, he would suddenly transform from being slumped and silent into a walking, talking marvel. As soon as the visitors left, he would revert back to being unable to walk etc. which annoyed me intensely because it was as if everyone else was getting the ‘same old Anthony’ and Son and I were getting the ‘leftovers’. I also found it frustrating because visitors would inevitably say to me, “Oh he’s so much better than I though he’d be.” In other words I felt I was being perceived as a liar or, at least, an exaggerator.

Assuming it was some sort of adrenaline rush, I once asked one of Anthony’s doctors about this (oh yes and Anthony would always ‘perform’ very well for them too). This doctor told me the famous story of a nursing home fire where the Parkinson’s patients, all wheelchair bound, were trapped on the third floor. As this was being reported by nursing staff to firefighters, someone noticed that all of these patients were standing outside the building, staring up at the fire. They had all run down the stairs and escaped! The doctor said that this phenomenon had been termed ‘paradoxical kinesis’, where the faulty brain suddenly does a kind of U-turn.

I’m no scientist so I don’t know, but, with Anthony, it seems to be triggered by a kind of fear – almost like a performance panic that works in his favour. With people he sees a lot of and is comfortable with it doesn’t happen, but with people he hasn’t seen for awhile, or for any professionals (doctors who visit him in the nursing lodge, for instance), he rises to the occasion with great skill and ease.

When he was living here at home, he would sleep for hours after a bout of paradoxical kinesis and yet our visitors would go home thinking he was fine and dandy. Mmmmm!

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Unbearable

I keep trying to keep trying to keep trying – to be funny, to be positive and all that – but sometimes there is just no point in trying to keep trying when it’s all downhill anyway.

Parkinson’s disease is an absolute shit of a disease; it sucks all of the joy out so that the laughing stuff is knifey, cynical, brave but hopeless.

When I went to pick Anthony up today, I hoisted him up off his chair but then somehow lost him and he slid to the ground. I had to get a nurse to help me pick him up and for the rest of the day (we went to my mother’s for lunch) he kept saying I made him fall in a half-jokey way – barbed wire.

By the time we’d had lunch at my ma’s, seen Arthur, and gone back to Anthony’s nursing lodge, I was ready to fight someone, anyone, but there was nobody to fight. So I just drove home to the farm, thinking about my conversation with Anthony in which I said, “I haven’t abandoned you – you have abandoned me!”

Apparently you are not supposed to ask why? You are supposed to ask what? Well, as far as I’m concerned, the what can get over itself because it is the why that makes my heart beat so thunderously.

Why does this Anthony, pictured only 18 months ago, not resemble the Anthony I see now? Why?

Unbearable.

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Oprah!

When my book about Alzheimer’s disease and storying was published (this is not a plug, so I am deliberately not providing a link), I handwrote a little letter to Oprah Winfrey on a special card, and wrapped the note, and my freshly published book, into a package and snail-mailed it to the address on Oprah’s website.

At the time, Oprah was promoting books she liked via her bookclub so I was rather hoping she would make me instantly famous and I kept waiting for her phonecall to me. So, when I received a letter from Oprah, my excitement was huge! But when I opened the letter it was from one of Oprah’s personelle and it expressed gratitude for my gift but implied that my generosity might be better served if I targetted more needy people (of course it didn’t say that, exactly, but that was the gist of how I read it).

Well, that was a very good lesson in humility (which I was already pretty good at anyway), and it taught me a massive thing about laughter, about laughing at myself and about dealing with seemingly dashed hopes.

I sometimes wonder where that copy of my book is. I have a little fantasy that it is on Oprah’s coffee table somewhere and one day she might pick it up and read a bit. You never know! I have enormous admiration and respect for Oprah Winfrey; her honesty, achievements and generosity are all part of the aura of her legacy and her presence.

I just want her to love me back a bit – just a little bit!

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A better life?

Today has been eventful.

A lovely place has been found for Arthur (see previous post) and he will be leaving in a day or so. Ming (Son) has told him the hut is no longer safe and we have to have it inspected for wiring (which we do).

One of the guinnea fowl was cowering in the corner of the emus’ lean-to, so Ming helped her get out. I think she wants somewhere safe to lay eggs, so here we go again!

Ming and I went out for lunch despite suffering from gastro. We had to go because it was a promise we made yesterday when we had our long discussion. I had chilli prawns and now feel amazingly better!

Anthony got angry on the phone this morning (first time ever) and said he was hurt (first time ever) that he couldn’t come home for the night so I have arranged to pick him up for the day tomorrow. His uncharacteristic upsetness has cast a shadow on today, but tomorrow will be better.

I have nearly caught up with the washing and folding of clothes.

Ming is a happy chappy.

I am too but I seem to have this spare water balloon full of tears that keeps landing in front of me, making me afraid to smile, or take the next step.

Ming said he read the post about him on Facebook and hated it but then he grinned.

One of my two PhD students has finished and submitted his thesis.

Anthony just asked me on the phone (I ring him several times a day when I can’t get in to see him) if I still loved him and I said yes.

During lunch, Ming said we were not to talk about Anthony so we didn’t.

The ute is making a funny sound.

I had a dream last night that I was having an argument with someone and a hippopotamus squashed her.

The main car’s side mirrors are smashed and I still haven’t rung the insurance company.

Nearly all of the young peacocks now have long feathers.

Wild galahs and 28s are everywhere.

There is a rat in the washhouse which only Ming has seen, so I need his company to do the washing.

I have a mother who is a best friend.

The electricity has not gone off now for a couple of days.

I have resigned from my job at the university.

I will never, ever wish for a different life.

I will never, ever wish for a better life.

This is a better life – this is the best life.

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His name is Menzies

There is nobody like this son of ours – nobody! I never stop feeling lucky to have such a wonderfully weird kid. Menzies. (Don’t worry, I think weird is wonderful!)

This morning he made me laugh my head off because he sounded just like John Cleese in Fawly Towers when he was trying to get all of the birds to stop coming to the back door. “Why do you have to come so close to the house? WHY? Go away!” At the time he was wearing a black dressing gown, a black hat, and thongs, and he resembled someone who might have escaped from an asylum a century ago. Menzies.

This afternoon (after I had visited Anthony in the nursing lodge), Son and I had a dreadful argument during which we both bashed our heads against the kitchen door. Menzies.

This evening, Son convinced me to sit down at the kitchen table and talk things through (instead of our usual tactic which, lately, is to avoid each other). Menzies.

We talked about the past, present and future; we talked about Anthony; we talked about everything and, each time I felt we had said enough, Son would ask me to sit down again so we could finish the conversation and reconcile. Menzies.

Anthony named him after his his mother’s brother’s middle name, Menzies, a Scottish Gaelic name that is pronounced Mingus. Menzies.

Everyone just calls him Ming. Menzies.

He is my hero, my conscience, my muse, my prison, my freedom and everything else.

But always, for both Anthony and me, Ming is the best thing since sliced bread!

Menzies.

And he is an expert at turning a bad day into a good day.

Ming

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Arthur

Another page of this era is crumpling because of what I have just had to do about Arthur who has worked and lived here for most of his life, milking cows for Anthony, and, after the dairy stopped, doing lawns etc. He lives in an old millhouse at the back of the garden and he loves living here but, at 70, he is now becoming too frail and can’t care for himself properly. Yesterday, the electricity to his ‘hut’ short-circuited itself for the umpteenth time (this was happening before and after the cyclone) and I finally realized and accepted that the wiring in his roof is dangerously old and that Arthur would soon need to go into care.

So I have just made the call to the wonderful people in HACC (Home and Community Care) over here and they are going to organize things and I am about to send Son over to have a chat to Arthur, to warn him. I am not sure whether to ring his family in the next town (brother and niece) because they are estranged.

When Anthony was at home he would go over at least once a day to either chat with Arthur or to yell at him to clean his hut up. They had/have a relationship spanning over 55 years. Son was very kind and patient with Arthur until Arthur began to become too hard and I began to get worried that one day I would find a corpse in that hut. And now that our Winter is beginning its blast, I am even more concerned.

So I am glad I made the call and I think Arthur will be much better off in a warm room with constant care, but I am so sad too because it is as if history is being gobbled up.

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Birthday boy – Baz!

Today was Anthony’s best friend’s 50th so I went into the nursing lodge and picked Anthony up to bring him to the party early, before the throng arrived, so that we could have a quiet drink with Barry (Baz).

A lot of things went wrong:

  • Anthony couldn’t walk from the car to the chair to sit down and Barry and I took awhile to get him seated;
  • Anthony started shaking and shivering immediately, so Baz gave him a red wine to help and that seemed to work;
  • Anthony had to be back at the nursing lodge by 6pm at the latest, for his pills and for dinner;
  • It took a couple of people to get Anthony back into the car to go back, by which time I was openly crying which was embarrassing;
  • Anthony squeezed my knee as I  pulled out of Baz’s driveway, but I was so distressed and disconcerted that I banged into the fence on the left, and then on the right;
  • I got Anthony back to the nursing lodge in time and went back to the party to make sure I hadn’t damaged Barry’s fences (I hadn’t – phew!)

A lot of things went right:

  • Baz liked his birthday present;
  • Ants and Baz were happy to see each other;
  • Baz’s wife, Julie, and I had a huge, wondrous, hug, as Anthony and I were leaving;
  • I have now realized that Barry’s birthday party will be the last one Anthony ever goes to.

Happy birthday Barry, and I wish so much that Anthony could have been there properly – not like this sick, old man, but like the life of the party he used to be – oh well!

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Unchopped wood

Here is a typical little scene of when Anthony/Husband comes home for the day:

I hear yelling outside as I am preparing lunch. I hear the slow chopchop of the axe. More yelling – Son to Anthony. I hold a grrrr tight in my chest.

Then, like a constant re-run of an old episode ….

Son (running into the house in a panic): Mum – Dad is trying to chop the wood again! He won’t stop!

Me (stirring the fish mornay for lunch): Is he okay?

Son: Yes, but what if he chops his leg off?

Me: If he chops his leg off we will deal with it. Just stop yelling at him. Let him do it – please – let him do it.

Son: Well do I supervise or what?

Me: Only if you don’t yell at him.

Son: Grrr!

Anthony usually manages to chop enough wood to start a fire in the fireplace before exhausting himself. Before he moved to the nursing lodge we would have a fire going 24/7 because he feels the cold so badly. But, when he isn’t here, Son and I don’t bother because, until next February, when Son’s spine is totally healed from the operation, he is not allowed to do things like chop wood, lift heavy objects, ride his motorbike.

So, except for when Anthony is home, that pile of wood remains unchopped and the fireplace unlit.

The warmth of Anthony’s presence is much more than metaphorical!

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Pondering 2

Some people say that love never runs out but I think this might be a lot of crap (and I don’t mind debating this), because it does run out. It runs out all the time in all sorts of different situations. Sometimes it dries up from the heat of exhaustion; sometimes it trickles into other ponds; sometimes it kangaroos away; sometimes it smothers itself with toomuchness; and sometimes it simply evaporates.

Some people say that the opposite of love is not hatred but indifference and, to some extent, I understand this theory but not entirely; I have been the recipient of both and the perpetrator of both. I hate Anthony’s disease(s) and I hate those who have hurt him and both of these hatreds will never become indifference while he is alive.

Son’s attitude has altered from hatred (of Anthony’s disease, of Anthony himself, of life and circumstances in general) to indifference (again, supposedly the opposite of ‘love’). This has only happened recently and, to begin with, I was upset because, as Anthony’s wife and Son’s mother, I wanted Son to keep on loving his father, but the fact is, quite simply, he doesn’t because he can’t. And that is perfectly all right because he is only 18 and has helped me in the caring role for many years now and he deserves to soar ahead of us.

Last night on the phone to Anthony I told him that Son had a problem coping with the situation, and with him, and Anthony, always pragmatic, just said, “Give the kid a break, Jules! I love him and he loves me and we both love you more than anyone in the world.”

Some people say that love never runs out and I agree. It just gets a bit whispery.

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Inviolable

I love this word so much.

It signifies strength, fortitude, courage and it means you can step off the metaphorical mountain and freefall into the water and easily – very easily – swim to the shore.

Inviolable.

If I had had a daughter I would have called her Viola!

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