jmgoyder

wings and things

Last Christmas

Last Christmas, my husband, Anthony, was still living here at home. This year, on Christmas day, he will be visiting for a few hours via a wheelchair taxi and then going back to the nursing lodge. I am having a very hard time accepting the reality of what has transpired over the year – Anthony’s deterioration with Parkinson’s disease, Ming’s spinal surgery, me having to resign from my job as a university lecturer, and a whole lot of other stuff.

Tonight, Ming (nearly 19) saw me struggling with my seemingly endless grief and told me that he was scared – scared that I was totally ‘losing it’. That made me cry even more until he said, “Mum, please just let me in, let me help, we only have each other.” Then he vacuumed the inside veranda, cleaned the microwave and refrigerator, hung out the washing and sang one of the songs he wrote this year – You and me, cup of tea – while he was doing all of this.

I have never understood the term ‘griefstricken’ until now – not just my own, but others’ of course. And now I have the flu and am feeling sorry for myself while parents are grieving beyond any grief imaginable. I can’t say any more about this because I don’t feel I have the right to intrude on the already-trampled privacy of the griefstricken.

This will probably be Anthony’s last Christmas.

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There is nothing like having a peacock on your shoulder!

Over the last few days I have derived an enormous amount of joy and comfort from an unexpected gift – Gutsy9 – the little peachick who mostly lives on my shoulder.

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Parkinson’s paradoxes

When most people hear the term ‘Parkinson’s Disease’, they tend to think of Michael J Fox and the Parkinson’s that make you shake, move haphazardly or suffer debilitating tremors. Anthony’s type of PD is not like that and is often termed ‘Parkinsonism’. His symptoms have included a dramatic loss of movement. In many ways this is a kinder PD because of the lack of tremors but on the other hand the crippling immobility of brain/body has been a long, slow series of gradual shocks. First his hands couldn’t do things like open a jar of vegemite, steer a car, operate a chainsaw; then his face stopped ‘working’ in the sense that he no longer smiled and he stopped blinking, so that his eyes took on a blank look. I have already written about some of these things in previous posts so I won’t repeat myself.

One of the most noticeable things about Anthony’s PD is his stillness. Before the nursing lodge he would sit for hours on the front verandah in complete stillness. Sometimes he would be so still that the blue wrens would alight on his lap not realizing he was a human. Sometimes he would be so still I would think he’d died. Sometimes he would be so still he would drop his cup of tea.

Well, today I took Gutsy9, the baby peacock, in again to see Ants at the nursing lodge and guess who loved Anthony’s stillness?

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Control crying

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Gutsy-9, the baby peacock, is now about 72 hours old. He has begun to cry, and I mean CRY, if he is separated from me. His crying is like the beautiful sound of birds chirping and tweeting – multiplied by a million, which makes it not so beautiful.

If I put him on the floor he looks at me as if to say how could you abandon me like this?

Control crying methods will be helpful tonight.

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Nine

Tomorrow is the 9th of December and I have decided that, in order to combat the rut I am in, I will do everything in nines – 9 household jobs, 9 photos for Anthony, a 9×9 walk up and down our long driveway to begin getting fit again, 9 emails to those I’ve lost touch with, 9 blogposts (that’s a joke), 9 hugs for Ants when I see him in the morning, 9 hugs for Ming if he tolerates it, and 9 new thoughts/resolutions.

Lately I have been reading about autism and Asperger’s, not for any reason except that I happened to borrow three books about this syndrome and I became enthralled. No, I do not have autism, however I can definitely relate to the number obsession that some people suffer/embrace, and some of what I have read makes sense of what I was like as a child.

I always had to count my steps and couldn’t bear odd numbers, so walking to school I would always make sure that, between each bit of footpath, just before the crack, I would do either 2 or 4 steps, never 3 or 5. And, from my bedroom door to my bed, I always had to make sure that I took 6 or 8 steps, never 5 or 7.  If I made a mistake, I would get out of bed and retrace my steps to make it right.

This kind of thing (which I kept secret as a child) is a form of OCD – obsessive, compulsive disorder – and I happened upon an article recently that described my childhood behaviour in those terms. I found this extremely comforting and began to read more about OCD. It was a bit of a shock to find that some of my other weird childhood thoughts and habits were actually quite common and, in fact, quite normal in the OCD context.

Was this obsession with even numbers an attempt to make sense of a world that I found so uneven? I don’t know. I was adored by my parents and I adored them too, but I was plagued by uncertainty, anxiety and the very definite sensation that I was abnormal, which lasted well into my teenage years.

And now? The challenge of tomorrow’s 9 frightens me but compels me to get over this uneven number fear. I have to do it. I will do it, and my score will be 9/10. I’ll make sure of that!

Nine.

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Love story 125 -Needy versus needed

As indicated in a previous post, whenever I get to the end of my tether, the first person I talk to is Anthony – always.

I think it is remarkable that when I am the needy one, he becomes incredibly supportive and completely forgets his own neediness.

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This is Malay, our only remaining rooster. He has Anthony’s tenacity!

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No such thing as normal

I have always found the concept of ‘normal’ problematic. As a child I was obsessively anxious that I might be abnormal and would constantly ask my mother, “Am I normal?” She would always reassure me but I still had my doubts.

As an adult I eschew the notion of normal. It is such a bland, boring word and it hardly ever makes sense on its own. Without context, cultural and social, it is a vacuous concept. Quite frankly I don’t like it and it doesn’t like me.

I’m not alone here am I. But normal rules doesn’t it. It boxes you in with its perfect corners. But ‘abnormal’ isn’t a very pleasant word either so it is a dilemma for children when they are measured on such a continuum with nothing in the middle. The pressure to be normal or the same as everyone else is a ferocious pressure and can torture the child/person who struggles with not being able to fit into the box.

If you are not normal in the stereotypical way, you are not abnormal, you are just different, unique, original, maybe a bit eccentric even. So what.

If you are ‘normal’ well good on you!

I’ve always embraced Ming’s various idiosyncracies. When his pre-school teacher informed me, in serious tones, that he didn’t conform, I pretended to be concerned but was secretly thinking ‘yay!’ Hell, he was only 4! When he couldn’t grip his pencil in the normal way, a psychologist was brought in to see him at the school. Again, I pretended concern but secretly thought ‘does this really matter?’ He was only 7!

Now, however, I struggle with whether it is normal for an 18-year-old boy/man to emotionally detach from his father. I have allowed this to happen because my only other choice was to force guilt on him. It has been heartbreaking to watch this transition from compassionate to dispassionate son. 15-year-old Ming said to the doctor “we will never put Dad in a nursing home!” with his eyes full of tears. 18-year-old Ming doesn’t even want to see Anthony anymore. “It’s not Dad now,” he reasons.

I bought one of those mini photo scanners the other day. My plan is to scan the best of hundreds of photos of Ants and Ming that I took over the years of Ming growing up.  I will then organize these into a photo book for each of them for Christmas.

Last night I asked Ming, “Can you reconjure any compassion at all?” and he said, “No, Mum, but I can pretend.”

That is enough. That is normal enough.

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Mini-strokes

After Anthony’s hospital adventure yesterday, the hospital doctor rang me and said that the CT scan didn’t show anything and that she surmises he is having TIAs (mini-strokes) and this makes a lot of sense to me because I have seen him have these strange ‘turns’ a lot over the last few years. When I did a bit of research, all descriptions of TIAs were an exact match so, even though a TIA can’t be picked up on a scan, this does seem to explain these episodes. The trouble is – like yesterday – he just looks as if he is asleep and it’s only when I try to rouse him that it becomes obvious that something is wrong.

The nursing lodge staff want to watch him carefully for a week and I’ve been advised not to take him out, so that’s fine. I mean, I haven’t been taking him out lately anyway, because it is so difficult to lift him and all that. I rang and spoke to him and he said, “Maybe I should just step in front of a truck!” and I reprimanded him but of course who can blame him for feeling like this.

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An eventful day

Today’s plan was to bring Anthony home for lunch but I got a phonecall at the crack of dawn from the nursing lodge to report that he’d had a bad fall and they would be getting an ambulance to take him to hospital. He’d been found on the floor next to his bed with his head bleeding and seemingly concussed. The nurse who rang me reassured me that he wasn’t anxious or in pain and, knowing how fond she is of Anthony, I took her word for it and decided not to freak out.

So I calmly got dressed and ready to go into the hospital, but waited for Ming to get home from milking the cows first. I rang the Emergency department and was able to speak to Anthony and the first thing he said was, “I’m such an idiot!” We had a bit of a chuckle and I said I’d be in soon.

Unbelievably, by the time I got to the hospital,  and waited at reception (rather a long time), I was told that Anthony had just been ambulanced back to the nursing lodge. So I calmly left and headed to the nursing lodge to find him looking fine but with a wound to his right temple (the opposite side from where he had the skin cancer taken out last week). He was surprisingly nimble, so using his walker, we walked out into the patio and sat at a table. I teased him in my usual way and he held my hand in his usual way and then he went to sleep in his chair so I grabbed a magazine and read the latest celebrity gossip, then went down to the nursing lodge kitchen and asked if I could order lunch to have with him. No problem.

I went back to the patio and Anthony was still drowsing so I sat there calmly thinking oh this is so boring, then the lunch arrived – a beautiful roast dinner. At this point, I punched Anthony in the shoulder (lightly) to wake him up, but he didn’t respond, then I shook him and said loudly, “C’mon Ants – lunch is here!” No response. So I calmly went and got a nurse.

Well, there was a fair bit of panic when nobody could rouse him  so once again the ambulance was called and a troop of nurses used the hoist to lift Anthony from his chair to a trolley to take him to his bed. They wheeled him off but I didn’t follow immediately because I was very calmly bursting into tears. One of the nurses came outside and asked if I wanted a hug but I said no thank you, not now, maybe later.

Once I got my stupid eyes to stop leaking, I went into Anthony’s room where the same nurse was taking his blood pressure and looking worried. He’d come to a bit but looked very dazed. I tried to jolly him up by mimicking what he’d done outside but he had no recollection of course and was a bit nonplussed at all the fuss.

The ambulance arrived and I met them at the hospital and, after several more tests including a catscan, he is once again going back to the nursing lodge, and I’ve just got home.

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Love story 122 – Every evening

Tonight’s phonecall with Anthony:

Ants: I am just across the road, not far. Can you pick me up?

Me: It’s really late, Ants – I’ll see you tomorrow morning, okay?

Ants: But I’m not sure about this party.

Me: I can hear the nurse, Ants, and she is going to put you to bed right now. You’ll be fine and I’ll see you tomorrow.

Ants: Why can’t you come and help me?

Me: It’s 8.30pm, Ants.

Ants: Just for a cup of tea?

Me: I’ll be there at 11am tomorrow okay. Just try and go to sleep.

Ants: I miss you so much, Jules.

Me: I just saw you yesterday. Pull yourself together Ants!

Ants: I wanted to burst into tears.

Me: What? You better not do that – you are not a wimp. Stop it!

Ants: Okay, are you sure?

Me: Sure about what?

Ants: That you love me.

Me: Yes! How many times do I have to tell you this?

Ants: Okay, that’s fine. G’night Jules.

Me: G’night Ants – see you in the morning.

I think I am getting stronger and less affected by these sometimes bizarre evening phone conversations. Paradoxically, I have never felt so exhausted. This is probably because I am finally being more honest with Ants and have stopped tiptoeing around his constant home-coming wishes. He keeps reassuring me that he is getting better which is, of course, not true. Yesterday at the nursing lodge I couldn’t even manage to hoist him up from his chair to use the walker to walk me out and we both gave up.

My emotions seem to be having a rest and pragmatism has come to the rescue. I hardly ever cry now – it’s weird.

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