jmgoyder

wings and things

Pleasure versus pain

How interesting! I just sussed out the recent statistics for this blog (something I don’t usually do – really!) and found that pain is much more popular than pleasure. I don’t have these two pps as categories in this blog, but it is obvious that more people want to read about sad stuff than happy stuff.

Why?

I do understand this because, when I was teaching Creative Writing at the local university, I used to talk to the students about this writing conundrum (this was before my husband got so sick), and this is what they came up with at the time:

  • when you read about other shit, yours doesn’t seem so bad;
  • happy stories are dead boring;
  • yes, but tragedy always has comedy too;
  • why can’t I just gutspill onto the page?
  • because Julie said you need to restrain yourself a bit more
  • what a load of crap!
  • one painful sentence is worth it
  • fuck pleasure – let”s do this!

I miss those students and their wisdoms.

And I would like to know why pain is so pleasurable – over to you…..

Why?

Photo courtesy of Shaam Burley

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Anti-heroism and honesty

My post about Anthony coming home yesterday elicited a few encouraging comments for which I am appreciative, but also humbled, because I am not this hero I have somehow cast myself as, so I need to remedy that impression. No, I am much more the anti-hero, regardless of my good intentions. So this post is about honesty.

When Anthony comes home and wants to be the workaholic he once was, and draws attention to the things Son and I haven’t kept up with (lawns, garden, sweeping pathways, cleaning out the washhouse, washing the car), I become bitchy and resentful and say things like, “I’m doing my best. Why do you always have to find fault?” and sometimes I add a few expletives for good measure.

When Anthony comes home and can’t walk properly, I sometimes hurry him along and then (because he is heavy) thrust him into his armchair in a way that is not gentle and he says, “Why do you have to be so rough?” and I retort, “It’s the only way I can get you into the chair!” and he says, “Well, do you have to throw me?” and I snap, “Yes!” Sometimes we both then collapse into laughter so it’s okay, but sometimes we don’t.

When Anthony comes home and is in the armchair, asleep or semi-conscious, I sneak away and do other things because if he doesn’t want to watch Black Books or look at my blog or do anything except slump, I avoid him – yes I avoid him.

When Anthony comes home, I count the hours before I can take him back to the nursing lodge because he has somehow transmogrified into a job, rather than a person who I love and, even though this is difficult to admit, I love him more at a distance (both geographical and temporal). In other words, I love him the way he was and I find it difficult now to reconjure that.

He and I talk about these things which I realize probably seems strange, but he has always been my mentor, my confidante, my best friend so sometimes I tell him about how difficult he is as if he is another person, and he gives me advice.

“You will always be my hero,” I say, “but now Parkinson’s has got you.”

“I can get better,” he always says.

“No you can’t,” I say.

“But I love you,” he says.

And, just as I leave him at the nursing lodge, I say the words too – “I love you” – then I drive back home, sometimes teary, sometimes nostalgic, but always relieved, guiltily relieved to hand him over – my hero.

The picture below is of our two male golden pheasants who nearly fought to the death over a female and the one on the right, Phoenix 1, won the battle and now Phoenix 2 has been banished. I don’t know why, but it seems an appropriate picture for this post.

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Two more Hot Potato Award winners!

I didn’t want to cram any more winners into the previous Hot Potato Award post and I would really like to give these two amazing bloggers (who also happen to be people!) the HPA. Once again, this is not an award that has any obligations attached to it – you just take it and copy/paste it to your blog, or not.

The first blogger is a daughter who cares for her mother who has Parkinson’s Disease. She does this with a mixture of glee, energy and humour, but she is also very honest about how hard this can be.

http://camsgranny.wordpress.com/

The second blogger is a sister who cares for, and lives with, her brother who has Parkinson’s Disease. Her daily blog of the ups and downs of this journey is both heart-breaking and inspiring.

http://terry1954.wordpress.com/

Jo and Terry are both wonderful examples of selfless heroism. I take my hat off to them and hope they will accept this award!

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How to unfold a day

Anthony was home for most of today and, for a couple of hours, he was okay and mobile and trying to do some jobs, and he and Son got the Aga lit. Eventually! Teenagers (Son) and geriatrics (Husband/Anthony) don’t always agree on these things. And, it struck me, as I withdrew from their Aga-lighting tiff, how amazing that my two ‘boys’ – this father and son who look exactly like each other but who have an age difference of nearly 60 years – can communicate at all.

After a lunch of doner kebabs, which Anthony used to love but couldn’t manage because his hands don’t work so well any more, everything went a bit downhill and Son withdrew as Anthony became more and more crippled up. His morning drugs for Parkinson’s seem to work well, but by early afternoon it became a predictable downhill slide and by 4.30pm he was more than ready to go back to the nursing lodge.

None of the things I had planned eventuated. I wanted to show Anthony the latest blogposts, which he usually loves, but he said he was too busy for that even though he was just sitting in the armchair near me, drinking a cup of tea. He wanted to sweep some of the bird crap away from the back door, even though Son and I had already done this, so I walked him outside very slowly with his walking stick, saying ‘1,2,3’ which usually gets his legs working. Eventually I put the straw broom in his hands and told him that if he fell over I would kill him, and left him out there to try. And while I watched through the window, he did a little bit of a sweep and then froze, head down, unable to move; this is Parkinson’s.

On the way back to the nursing lodge, Anthony was a bit incoherent and seemed to be having another ‘turn’ but then he suddenly said, “Jules, when you bring me home tomorrow, can’t I stay the night?” and I had to, once again, say it was too hard, he was too heavy etc. He accepted this and my guts twirled with how horribly humiliating for this man who used to be such a macho machine to have to ask me if he could sleep in his own home.

So, tonight, having rung Anthony to say goodnight, and having fed Son who is now milking cows again for the beautiful neighbours, I am unpleating the day and wondering if I could have done it better, wondering if I should be crying, wondering and wondering and wondering….

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Dancing days

It’s Sunday here and in a couple of hours I will go into the nursing lodge to have lunch with Husband. I haven’t seen him for a few days because I have had the flu, but we have, as usual, spoken on the phone several times a day. He has missed me terribly but has coped. I haven’t missed him as much, which seems a terrible thing to say but there you are – I’ve said it.

We have talked about this disequilibrium of the missing-you thing.

Husband: I miss you now, I miss you all the time.

Me: I miss you then, I miss the way it was when you were well.

Husband: But I can be the way I was. I’m getting better.

Me: It’s not your fault – it’s the bloody Parkinson’s. You’re not getting better, you’re getting worse – that’s why you’re here so you get proper nursing care.

Husband: I don’t want nursing care. I want you.

Me: But I can’t lift you anymore, and I can’t make you walk, and I can’t manage you during the nights.

Husband: So I am never coming home for the night again?

Me: I don’t know. What’s wrong with coming home for the days?

Husband: It isn’t enough.

Me: I know.

Husband: And where’s the kid?

Me: At another party.

Husband: Just like I used to be.

Me: Just like you used to be.

Now I realize this all sounds very poignant and sad, but it always (well, almost always) ends up in a laugh about the dancing days.

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Wrong way. Go back.

In Western Australia we have big signs wherever roadworks are being done in case people go the wrong way. This can be useful, but it can also be a bit confusing.

It’s a little bit like that with blogging because you get really curious to go down a certain blog path, you like what you are reading/seeing, but you are also uncertain of where exactly you are and sometimes the historical context of where you are, in that person’s blog, takes quite a bit of time, quite a bit of deciphering.

With my own blog, Wings and things, it’s obviously the same experience for new readers or followers because, of course, the latest post is always the most recent and, unless people  have time to go back, they might not ‘get it’ that there are two different-but-same stories running parallel. The Love story is about the past but everything else is about the present.

As many of you already know, my husband has chronic Parkinson’s disease and terminal prostate cancer and is now in a nursing lodge close by. Our 18-year-old son recently had major spinal surgery. And me – I love birds!

I can’t keep up with the many blogs I am interested in, no matter how hard I try, but one thing I like to do is to go back and read the very beginnings of those blogs which is what I hope people will do with mine. It’s not that there is a wrong or a right way necessarily, but going back can be fantastic!

Oh yeah, and if you go back, you will find that I don’t usually do 4 posts in the day. I cheated today with the pics – hehe!

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‘Cross my heart and hope to die’

The idiom that heads this post apparently means the same as ‘I am telling you the truth.’

The other day, I said to Son, “If I get sick, or old, or if anything happens to me that makes it impossible for me to take care of myself, then please place me in care – in a nursing home. And, when that is done, I do not want you to feel like you have to visit me, or ring me, because I will be absolutely fine in the knowledge that you are fine.”

I suddenly remembered that childhood saying and, before thinking too much, I said to Son, “Cross my heart and hope to die.”

Son looked at me as if I were an alien and said, “What the hell are you talking about?”

And then he threw his arms around me and gave me a huge hug.

Tomorrow, when we go and see Husband, I am going to give him a huge hug and ask him what he is giving me for Mother’s Day.

Cross my heart!

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No

As I write the tidbit scenes of my love story with Husband, I am filled with a nostalgic joy, the memory of anticipation, the thrill of our marriage of nearly 20 years, and our now teenage son.

At the same time, the thud of our present circumstances seems to twirl the present and the past into a surreal mix of agonizing happiness, of hopeless hope, and a longing that stretches across this farm to once upon a time.

Today, when Son and I visited Husband in the nursing lodge, Husband wanted to come home with us for the night and I had to, once again, say no.

I never realized until today how horrible the word ‘No’ is.

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On Sunday

On Sunday Husband was picked up from the nursing lodge by another good friend and they both arrived at around 11am. Soon after, Son was delivered home from a party by one of his good friends.

The day was full of hope and some of those hopes happened – the Aga was lit (not an easy task after 6 months of being unlit), and the fireplace was also lit.

Husband had around half an hour of being able to walk around, supervise things and then he froze just outside the front door, his hands full of woodchips for the fireplace. As Son and I helped him into the house and onto his favourite chair in the living room, I cried openly, and in front of Husband, with the frustration of not being able to get him to walk. It took a good half hour before I could get Husband settled in his chair, by which time Son had abandoned us before whispering to me, “Mum, please tell him he can’t stay the night!”

So, during the next hour or so, I broke it to Husband that he couldn’t stay overnight any more, because he was too heavy etc. and needed to be looked after by nurses. He agreed, but was a bit shocked that he wasn’t staying the night. The sorrow and his words, “Well, I may as well shoot myself” were unbearable, but I tried to laugh it off by saying, “You wouldn’t be able to pull the trigger,” and Husband did laugh then and asked me to give him a hug.

Actually, I can’t seem to tell the rest of this story because it’s too hard. In short, I took Husband back to the nursing lodge.

On Sunday, we entered a new phase….

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Joy

I used to think that Joy just automatically flew into your soul

She doesn’t

She always waits patiently for you to stop feeling sorry for yourself

and she doesn’t tolerate grumbling, mumbling, bumbling, stumbling or crumbling

She waits for you to tell her that it is okay to fly away

but to come back soon.

You can’t just say ‘yes’ to Joy; you have to say ‘yes, please,’ because Joy is very polite

I said, ‘yes please’ to Joy a minute ago

and she just landed on my shoulders.

Joy was a bit abrupt when she told me to clean the cobwebs out of my soul,

but I followed her instructions with a bit of Ajax.

I quite like her!

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