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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Luxury holiday!

Anthony and I visited Arthur today in the hostel where he has temporarily been placed.

We wanted to see if he was okay and we were both relieved to find that he was much more than okay; he thought he had died and gone to heaven! Not really, of course, but for this decrepit old man to move from a decrepit old hut to a nice warm room with lots of friendly people, lots of regular meals and attentive carers is like, in his words, “a luxury holiday!”

Arthur doesn’t seem to miss Tina Turner at all! I can’t imagine why….

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‘What about me?’

Bubble: It’s not fair. She always forgets about me and I was here long before that show-off, Baby Turkey.

Zaruma: I hear you, bro – I was hurt to be left out of that ‘I thought this was a bird blog’ post too. Julie seems to have forgotten that we were here first.

Bubble: Well, not technically, Zaruma. Perhaps I should have told you this earlier but you and I are actually named after the original Bubble and Zaruma.

Zaruma: Yeah, I’ve heard about those guys.

Bubble: They were heroes.

Zaruma: What happened to them?

Bubble: It was terrible. The first Bubble got bitten by that rotten dog and the first Zaruma died in his sleep. Julie and Ming cried and cried.

Zaruma: Wow, I didn’t know.

Bubble: There’s a lot you don’t know.

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Angels humming?

When I was eight, I went away to a friend’s parents’ lake cottage for two weeks and was so homesick that I found everything beyond the first day unbearable.

On the long trip home, I looked out of the car window as the trees rushed past and all of a sudden I thought I heard angels humming. I don’t know/will never know if this was imagination, wishful thinking, my prayers, or real angels singing just to me, but it sustained me until I was delivered back to my family.

Today, I thought I heard exactly the same sound and, since I wasn’t having such a good day, I embraced the sound, amazed!

It wasn’t until the humming angels became rather loud that I discovered I had left the door of the refrigerator open and it was the alarm.

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‘I thought this was a bird blog!’

Angelina: It’s a bird blog primarily, of course, but Julie keeps going off topic.

Queenie: I’ve noticed that. She keeps blogging about silly old men!

King: Like me?

Queenie: Darling, never – your tail feathers will grow back soon!

Baby Turkey: I have now held this pose for several hours but Julie still hasn’t noticed!

Diamond: Me too.

Guinneas: I’m sure she’ll get back on topic soon. We always do.

Phoenix 1: She hasn’t taken much notice of me lately either, which is a bit hurtful.

Godfrey: I suggest we all start biting her. Watch and learn.

Emery 2: Noooooooooooooo!

Tina Turner: Yes – Godfrey is right!

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The Joe story 5 (final excerpt)

The following excerpt skips 200 pages from the last one and is part of the last chapter of the book.

THE JOE STORY

Joe was dying.

I would chatter away, holding his hand, sitting on the side of his bed. He would look at me, then look away, then look at me again. His eyes, which had been so blank and uninterested when I first met him, and had then, for such a short time, become so twinkly and mischievous, now alternated again between blankness, bewilderment and obvious physical pain.

Joe stopped speaking altogether.

I cannot presume to know what he was thinking, what he was trying to say when he opened his mouth and nothing came out. But I did know the dreadful pressure of his hand a few hours before he died, the groaning sound in his chest, the whispered barely audible nonwords, the rough, familiar feel of this cheek, and the tears which stood in his eyes in a proud kind of way, as I kissed him goodnight for the last time. [pgs. 203-204]

http://www.fremantlepress.com.au/books/1039

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The Joe story 4

THE JOE STORY (continued)

By this time everyone, staff and patients alike, had entered into Joe’s romantic fantasy. The story had even become part of handover and often, when I was doing an afternoon shift, I was greeted with, “You better go and see Joe, Julie – he’s been asking for you all morning.” Joe, who had always been unpopular with the staff because of his grumpiness, began to flirt with all the nurses. Sometimes I would come into the dayroom to find him holding the hand of another nurse laughing and joking. On seeing me, he would quickly let go of her hand look up at me guiltily. Later he would whisper anxiously, “Don’t worry Julie, you’re the only one I love.”

A striking repercussion of the Joe story was the way in which Joe’s sense of identity was transformed from that of a sick old man to that of a virile young man. Even though we were acting out a kind of fantasy, there was nothing unreal about the way he began to feel – happy, attentive, more involved in what was going on around him – and this was a man who, according to some of the staff, had sat for years in silence, using his voice only to yell abuse, or to cry.

…………..

The thing Joe said to me most often was, “We’ll be married in Fremantle, my darling.” He must have had a wonderful wedding, and a wonderful marriage, for this to feature so much in his conversations with me. [pgs. 10 – 12]

So that is why I entitled the book, Well be married in Fremantle. In hindsight, it was a probably a bad choice of titles because of its ambiguity, ie. it wasn’t obvious that the book was about Alzheimer’s Disease, hence it was a difficult book to categorize and market – oh well!

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The Joe story 3

THE JOE STORY (continued)

Gradually he [Joe] began not only to recognise me but to become more and more enamoured, enchanted, with the idea of a romantic involvement with someone. His memories, and his ability to verbalise these memories, had been refuelled by my interest and he began to ‘court’ me. ‘Sarah,’ with whom in his mind I was now conflated, had been his fiancee seventy-odd years ago (Joe was now in his nineties). Not only did he speak of her with extreme reverence, but he seemed to think that she was me.

The ‘courting’ began one day in the middle of his shower. He looked up at me from the commode chair and said, “Julie, I have something to ask you – will you marry me?” I was taken aback but, feeling that it could do no harm, and not wanting to seem hesitant and perhaps hurt his feelings, I said, “Yes, I’d love to, Joe,” at which he grasped my hand and kissed it saying, “I can’t believe you’ve said yes, Julie. I am such a lucky man.”

Once our ‘engagement’ had become established in his mind, Joe quickly gained confidence and began planning the wedding. Every time I was on duty a new chapter of the story unfolded. One of the most fascinating aspects of the Joe story was the way in which he plotted what was for him a future event, using very vivid reminscences of events that happened so many years ago. Coincidentally, I had just become engaged to someone else and this gave the experience with Joe a surreal weirdness. When I came to work one day wearing my engagement ring for the first time, Joe was one of the first people to notice. “I hope you like it, Julie. It took me so long to choose.” [pgs. 8-10]

Okay, just to give a bit of time perspective to the above, these actual events occurred in 1992, the year I began my PhD and the year Anthony I were engaged.  The PhD took a bit over three years to complete (Anthony and I married in 1993 and Ming was born in 1994, towards the end of the PhD). After that it took another couple for me to rewrite my thesis into book form for Fremantle Arts Centre Press and yet another couple of years for it to be published. The ironies then and now are rather extraordinary (well, to me they are!) I have two more excerpts to type up after which you will have to buy the book – hehe!

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The Joe story 2

Here is the second excerpt from my book, Well be married in Fremantle:

THE JOE STORY (continued)

For the rest of that afternoon, I popped in and out of the dayroom to see if he [Joe] still remembered me, and I waved at him from the corridor as I went past. But mostly he didn’t respond at all so I’d pick the paper towel up from his lap or the floor and show it to him again, and repeat my request. Each time he smiled in a surprised way, as if at all the unexpected attention, and repeated my name.

It was several weeks before Joe could remember my name without some sort of prompting. I’d been quite persistent in finding the name tag or writing another one, which he would often stare at for a while before putting it into his shirt pocket. Then one day I came into the dayroom and Joe, seeing me approach, suddenly said,  “Oh, oh … I know you, you’re … you’re ….” But the question mark hung in the air and he lowered his head again, defeated. A few of the other patients, having witnessed my daily attempts, shouted, almost in unison, “Julie!”

“JULIE!” Joe yelled out triumphantly, and reached out and took my hand. It was quite a moment. A few of the patients actually clapped, Joe beamed I went around excitedly telling all the other nurses.

From then on Joe never failed to remember me. I had only to walk past the dayroom down the halllway and he’d yell out, “Julie, Julie, that’s my Julie!” – always rustling in his pocket for that elusive piece of paper, as if to prove to me that I was the name written on it. [pgs. 8-9]

 

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