jmgoyder

wings and things

Rage

It has been several weeks since a nasty skin cancer developed on Anthony’s forehead, right next to his left eye. He has had these before, many times – squamous cell carcinomas. Mostly our doctor burns them off with that nitrogen thingy, but a few years ago Anthony was referred to a specialist and put in hospital to have some of them surgically removed. The surgery went well but his meds. somehow got lost so he was off his face hallucinating. A second operation was scheduled but this time I kept his meds in my handbag just in case.

For several weeks now I have been trying to get some clarity from his doctor, the surgeon etc. because this skin cancer is painful and looks like a little red hole drilling into his head and if I hug Ants he winces with pain. The surgeon’s wife tells me on the phone that he is on the waiting list and I will be given an hour’s notice. Ming became angry enough to ring them back and beg for the surgeon to go see Ants in the nursing home before hospital but the answer was no.

I can’t lift Ants by myself anymore so I can’t drive him to the appointment especially if I only get an hour’s notice since we live a half hour away from the nursing lodge. I think I will get him ambulanced into hospital tomorrow and take it from there.

Rage

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Love story 100 – Do males always love themselves this much?

Prince (our only white peacock): I just love the smell of my feathers – glorious!

King: I know what you mean, Prince – I love the angles of my shadow on the lawn.

Okay, years ago – well before Ants and I got married and had Ming and well before Ants got so sick – I asked him to explain his arrogant, strutting self-posturing.

He said (and I will never forget it), “Jules, men have to love themselves just in case nobody else does.”

Oh!

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Butterfly haiku

The utterfly looks

for the B that will heal it

under the grey rocks.

The utterfly has

enormously big nostrils,

like big purple eyes.

The utterfly finds

its missing B in the hug

of an old, old man.

The utterfly finds

its missing B in the smile

of a young, young man.

The utterfly speaks,

sheds its mothy shabbiness,

enfolds its own B …

And becomes a butterfly.

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A stitch in time

Years ago, when I was working as a nurse in Perth, I was walking home one day and I suddenly felt a peculiar pain underneath my left lower rib. It was like a stitch or a slight cramp. It persisted off and on over the next few days until one morning it woke me up. As I got dressed I realized I was shivering even though it was summer and the pain was definitely more than a stitch. I didn’t have a car in those days so I decided to walk to the closest doctor’s surgery which was about two kilometres away. By the time I got there I was actually holding my side in agony, sweating profusely and feeling faint. The doctor immediately sent me to hospital in a taxi and after many hours of waiting and tests I was diagnosed with a severe kidney infection and ended up on a drip and very sick for over a week. After I was better I decided never to forget that kind of strange stitch-like pain, subtle to begin with, but soon agonizing.

Two days ago, during my little blog-breather, I was cleaning out my office when I felt the same stitch-like pain and that night I tossed and turned with the shivers – a fever. This time I didn’t wait and saw the doctor immediately who took samples and, long story short, yes I have a kidney infection again. Thankfully it isn’t as progressed as last time so I am on a course of antibiotics and that should be that.

I might be very good at looking after people who are sick but I am very bad at actually being sick. When I twisted my ankle the other week anyone would have thought I’d had my foot amputated; when the rooster clawed me and gave me a skin infection I limped around for so many days that Ming told me to stop my nonsense; when I then got asthma for a week I allowed google to scare the hell out of me; and now this.

The three things that scare me most about being sick are these: firstly, I am easily scared; secondly, I am needed; and thirdly, my family and friends will say, “you aren’t looking after yourself – you’re run down” which will make me feel guilty for being sick.

How come, when I am no longer working and no longer having to physically look after Anthony, I am run down?  Of course there are logical reasons like not eating healthily enough, not exercising, not getting enough sleep etc. etc. – we all know the drill – but now that I am beginning to admit-to-admit I am a little tired, I think it is simply that I am so sad. No, I don’t mean depressed, although of course that is a factor, I just mean plain old sad – sad about Anthony and his Parkinson’s disease and not being home with us anymore; sad that he is sad; sad that Ming is angry.

Chronic illness sufferers are so much more heroic than ‘come-and-go’ illness wimps like me. I salute them for their courage, determination and wit – and have met many via blogging. They don’t make a fuss about a stitch; they don’t let the sad stuff get the better of them; they soldier on, unfalteringly beautiful, and Anthony is one of these people.

Oh – google has just become my friend again – it says, “It is usually young women who develop kidney infections.” Ah, it’s good when a stitch makes you young again!

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Counselling

There used to be a real stigma attached to the idea of counselling – i.e. that you needed someone to help you sort your emotions out etc. This is no longer the case with most schools employing professional counsellors (psychologists or social workers) and many people seeing counsellors on a regular basis. Ming and I have sought this kind of help a few times, especially during the months when Anthony was still home but deteriorating fast, Ming was getting angrier by the day and I was getting beyond sad.

As I’m sure is obvious from various posts in this blog, I have not adjusted nearly so well as Ming has to Anthony’s moving into a nursing lodge. I guess I had always envisioned that one day Ants and I would both be old people (him 90 and me nearly 70), sitting in rocking chairs on our front veranda, and Ming would be gone, exploring the world in one way or another. I had no way of knowing that instead it would be Anthony gone away and Ming and me here together.

We are not coping well with what Ming continuously refers to as ‘our relationship problems’. The fact that he even cares about our relationship astounds me; after all, he is 18! He gets very angry with me, then gets the guilts and that whole vicious cycle repeats itself. So we have decided to seek the help of a counsellor again. Ming wants a man this time (our previous psychologist was a woman and she was great but it seems Ming is now at the age when he needs a man-to-man talk with someone). The trouble is the guy who has agreed to help us is on holidays for a couple of weeks. In the meantime, I emailed Ming’s primary school headmaster because he has always understood and liked Ming and he agreed to come over tomorrow afternoon to talk to Ming about his angst.

As I was driving Ming into music school this morning (well, he was driving to practise before his driving test in a couple of weeks), we were having our usual bitsy verbal wrangles. So I told him that Henry (name disguised to protect the innocent) was coming over to counsel him tomorrow, and Ming thought is was a great idea – phew!

This was our conversation:

Me: I told him you had angst issues.

Ming: What’s angst?

Me: Aggro.

Ming: Yeah, but that’s only because of you.

Me: What – the fact that my presence irritates you all the time?

Ming: No, not ALL the time, Mum.

You gotta laugh!

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Scary stuff

When I went in to see Anthony this afternoon at the nursing lodge, he was lucid, affectionate and understanding when I had to go pick up Ming from music school to get him home in time for milking.

When I rang Anthony half an hour ago, he thought there was a riot happening and that everyone had left and he was alone. These evening hallucininatory imaginings are now pretty regular, so I then rang the staff to alert them, then rang Anthony back and there was already a nurse in the room. I tried to reassure him, but he kept saying strange mumbling things and asking me to help. I said I would be in tomorrow morning and he latched onto that.

He was scared.

I am scared.

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Love story 98 – I don’t remember

Lately, I’ve been telling Ming stories about how Anthony used to be. The trouble is, even though to some extent I remember and am so glad I have written the various love story posts into this blog, I can’t remember Anthony in a way that reconjures him. It’s hard to explain but it’s like a shadow crosses my memories so that I see fleeting images of him: running around the paddocks rounding up cattle; milking the cows; having drinks with his mother on the veranda; wolfing his breakfast; winking at me …. I have hundreds of these image-memories but they are all very still – like the photographs never taken.

Every single time I see Ants, either in the nursing lodge, or when I get him home, I get a shock – every time. So not only is my memory faulty, my perception of now is too; I can’t seem to adjust to the reality of how incapacitated Anthony is.

Ming said the other day that he wished he had known Anthony when he was young. Me too.

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Love story 96: On the phone

Me: Hi, Ants, are you okay?

Anthony: Yes – when are you bringing me home?

Me: I couldn’t do the lunch arrangement and home as well today.

Anthony: I see.

Me: What’s wrong?

Anthony: I’m down in the dumps.

Me: Why? I thought you enjoyed the lunch.

Anthony: I did but then you made me go back. When am I coming home?

Me: Okay, Ants – I can’t manage you at home. You’re too heavy and I can’t do the nights.

Anthony: Why can’t we try?

Me: We have tried, Ants -please stop torturing me! And, by the way, why didn’t you speak coherently at lunch? Can you only do it when you’re telling me off?

Anthony: Okay, okay, Jules – please don’t cry.

Me: I’m doing my best, Ants! I thought lunch today would be great.

Anthony: I love you more than life, Jules – I’m sorry.

Me: Well you have a funny way of showing it – okay, I’m sorry too. Why did you have to get this stupid, rotten, bloody disease?

Anthony: I don’t know. Am I coming home tomorrow?

Me: Yes. Maybe.

Anthony: Are you picking me up?

Me: No – I can’t lift you so it’ll be the wheelchair taxi again. Ants, you know my blog?

Anthony: What?

Me: You know the blog I write?

Anthony: That clock story you wrote – remember that?

Me: No, not that. Well, anyway, I wrote about you today and admitted that I avoid you sometimes.

Anthony: Why?

Me: Because you are a pain in the neck, but I still love you.

Anthony: Jules, I have to go – it’s teatime.

Me: Okay, seeya, babycheeks.

Anthony: Jules?

Me: Yeah?

Anthony: You are wonderful.

Me: You’re not too bad yourself – I’ll ring you later to say good night – love you.

Ming: Will you idiots get off the phone so I can ring Davie? Oh, hi Dad – yeah seeya.

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Avoidance

I have been avoiding talking about, thinking about and even visiting Anthony for the last couple of days because I am so sick of the sadness of his Parkinson’s Disease, sick of my own guilt at placing him in the nursing lodge and, yes, sick of the increasingly blank expression in his eyes.

Today, I organized the wheelchair taxi to get Anthony from the nursing lodge to a nearby restaurant because my mother and her old friend wanted to have lunch with us. My mother’s friend has recently moved into a nursing lodge in Perth (200 kms from here) so it was wonderful to see him and he kindly paid for our lunch. It all worked out fine with the only drawback being Anthony’s blankness, because he is now beginning to find it difficult to form thoughts into words, so the conversation tends to happen around him rather than with him. Contriving topics of conversation that will trigger memories and get Anthony talking is not my idea of fun.

Ah, you think, how selfish of me. Yes, I agree but while I am being so honest here I may as well also admit that I was absolutely dreading today’s lunch. What if the taxi didn’t arrive on time? What if Anthony didn’t feel well enough for the lunch? What if he’d somehow missed his medications? What if I couldn’t find the wheelchair entrance after the taxi arrived? What if he had to go to the loo and couldn’t walk? What if the taxi didn’t come to get him on time? What if he couldn’t manage his food? What if he got unhappy with me? What if he got nasty about going back to the nursing lodge?

Okay, luckily most of those things didn’t happen, but some did and, towards the end of our lunch, I caught myself looking at my watch, just wanting it to be over so I could come home and be free again. Yes, I wanted to be free of Anthony – there I’ve said it.

The weird thing is that after following the taxi back to the nursing lodge and wheeling Ants into his room, he suddenly became unblanked and, using his walker thing (you know those ones with wheels), he almost ran me back to the entrance with a nurse accompanying us. At the doorway, as I said goodbye to my beautiful husband who barely resembles who he used to be, he suddenly said to the nurse, “She’s avoiding me, you know.”

The nurse said, “C’mon, Tony, what do  you think it’s like for her? Stop making it so hard for her to leave.” (I wanted to hug that nurse!) But Anthony just kissed me reluctantly and turned his back on me as I exited, then said to this huggable nurse, “She wants her freedom.”

Yes.

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Looking up

I’ve been asked a few times now about the rationale behind having so many birds when life is already complicated enough with Anthony’s Parkinson’s Disease, the nursing lodge transition traumas, Ming’s back surgery and subsequent life adjustments. So here is an explanation:

Last year, when Anthony was still living here at home and the idea of a nursing lodge had not even been contemplated, and I was already on an extended leave arrangement from my job as a lecturer at the local university, I decided to do everything possible to make our lives brighter. It began with the guinnea fowl because Anthony has always loved them; then poultry; then the peafowl (that was my idea). We had chookyards built, began to reap the delight of fresh eggs and the guinnea fowl (a dozen) made a very interestingly noisy addition to what had become an overly quiet life.

I befriended all of the birds and, to some extent, tamed them but it wasn’t until that first dusk when I watched, amazed, as all of the guinneas and peafowl flew up into the trees to sleep, that I realized I was hooked. Why? Because for the first time in years I was looking up.

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