jmgoyder

wings and things

Disorientation

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When I entered Anthony’s room the other day, his lunch had just been delivered but he was staring past the meal into space. So I pulled my chair close to his and began to feed him, spoonful by spoonful. Despite the way Parkinson’s disease has affected his facial musculature, he is still able to eat – to chew and swallow – but at times he seems to forget how to actually feed himself. He will often pick up a knife and poke at the food but not know what to do with it. Staff are aware that: (a) he still has a good appetite; and (b) he sometimes needs to be fed. So that is reassuring.

I compare Anthony’s increasing confusion about sustenance to my own hopeless sense of direction. When I was in Perth last week, I got lost several times on my way to various destinations. As soon as I knew I was lost, I became anxious, then went blank. Of course these situations were short-lived; nevertheless, they were a bit frightening because I didn’t quite know where I was.

Anthony often doesn’t quite know where he is. His list of possibilities include the following:

1. His childhood home in a country town down south.
2. The boarding school he went to as a child.
3. The boarding school he went to as a teenager.
4. A country mansion not far from here.
5. An historic hotel owned by a neighbour.

A couple of hours after I fed Ants his meal the other day, afternoon tea was delivered at about the same time my mother arrived to visit. Anthony has a sipper cup now but often cannot figure out how to use it. I took the lid off and tried to get him to sip but it was as if he didn’t remember how to do that either and some of the liquid spilled onto the feeder/bib. “Can’t you even drink now?” I exclaimed in frustration as the lukewarm tea continued to dribble out of his mouth. My mother remonstrated and I pulled myself together immediately.

I don’t like this impatient side of myself but, luckily, it doesn’t happen very often and of course is easily fixed with an apologetic hug. But I am now noticing within myself a strange, new disorientation; I fluctuate daily between a sense of desperation to see Anthony and a horrible reluctance. This means that lately I haven’t been visiting as often, or for as many hours, as usual.

Most probably, this is just a new phase. After all, Anthony is often asleep for hours now, unaware that I am sitting next to him with my hand on his shoulder. I think our phase of watching television series together has exhausted itself and I need to get back to more productive ideas of how to be in his room for long stretches of time. Scanning photos from the many photo albums I have stored in Anthony’s room will be my first task.

This afternoon I wanted to show Ants the more recent photos of the flourishing vegetable garden. But Anthony was too drowsy and incoherent which made me feel very tired and sad and, yes, disoriented too. I wanted (briefly) to just give up, whatever that means.

But then my mother sent me a photo of me with my first great nephew!

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I have found my footing again.

Reorientation.

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Special K’s operation

I wrote about this topic rather clumsily a few days ago, before my nephew Special K’s operation to remove the large plate in his thigh. Many thanks to those who commented but I deleted the post, and its Facebook counterpart, because I thought it might be better to wait until after the operation was over.

At 13, Special K is now over 6’2″ so the plate had to be removed because of how much he has grown since the car accident. Like all of our extended family, I was feeling a mixture of anxiety and confidence that it would all go well.

Well, Special K came through the gruelling operation (apparently an actual hammer was required) with flying colours, and was discharged the very next day – yesterday! As I was in Perth anyway, I was able to visit my brother, sister-in-law and SK in their hotel room. SK was lying on his bed, nonchalantly doing something on his iPad, while his mother was zooming around the city looking for KFC. I had a chat with my brother, then the chicken arrived much to SK’s relief.

As I watched him gobble his 5 pieces (or was it 6?) and noticed his parents’ tired but relieved faces, I squeezed Special K’s toe, then left them all to rest. SK was having to, once again, use crutches and take painkillers, and they were all planning an early start this morning as they live around 6 hours south of Perth.

I only live 2 hours south of Perth so I got home not long ago, and immediately checked my emails. My mother had sent me one and I was amazed to see that Special K and co. had dropped in to have breakfast with her on their way home – a significant detour!

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I love this family.

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Special K

‘Special K’ is the nickname I have chosen to give my 13-year-old, 6’2″ nephew, not just for the sake of his privacy, but also because he is especially special.

This is a difficult post to write but here goes: Special K was one of the five children injured in a car accident in which Ming was the driver … a bit over two years ago.

Special K was the only one thrown out of Ming’s ute, his leg was broken badly, and he was subsequently emergency-helicoptered to Perth with his father (my youngest brother). And yet this brave and beautiful boy, instead of screaming, helped everyone to calm down. I don’t know how he did this because I wasn’t there; I was at the other end of a suddenly-silent telephone call in which Ming said, “Mum, I’ve had an accident.”

Fast forward to now and all of the children have recovered physically except for Special K who needs an operation to remove the plate from his leg. He might even need another smaller plate inserted; I don’t know.

Ming and I were talking about life and death yesterday and he admitted that he thinks about the accident every single day.

Me: But you were so philosophical at the time, Ming! You kept reminding me that nobody died!

Ming: You were a mess, Mum.

I think the fact that Special K has to have an operation on his injured leg has thrown me back to that dreadful night and reminded me of how resilience works. IMG_0240

As you can see from the photo, Special K is almost as gorgeous as our brand new 007!

[This post is for you, Jo – mother of all mothers!]

34 Comments »

Unfinished….

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Such a strange realisation!

An ‘aha!’ moment!

The inability to get to the ‘finish line’ or the ‘punch line’ was making me utterly miserable (as well as my inability to understand/implement Tolle’s NOW concept, cope with a depressive episode, watch myself grieve for Anthony in a way that seemed premature).

But it wasn’t any of those bracketed BIG things that were bothering me; it was the fact that the few remnants of weeks and weeks of decluttering, finding history, reorganising the house/farm etc. were still here.

It was the remnants!

Old books, doilies, Anthony’s school report from when he was little, old photos of my dad when he was young, bark paintings from our years in Papua New Guinea, a thousand buttons, a pile of costume jewellery, a silk corset and bra wrapped in newspaper for 100 years, bits of china that would be valuable if not cracked, old instruction manuals from before I was born, and a whole lot of bits and pieces that must have had sentimental value for someone before Anthony was born, and maybe even before Gar, his mother, was born.

So today I began this last phase by going to the dump with Ming and unloading a very full ute-load of rubbish; then I proceeded to use a knife to cut up a very big carpet mat underneath my bed (it had to be cut up to be manageable) and Ming helped me. The dust that came out from beneath that ancient carpet was justification enough to get rid of it – wonderful!

And now I have contacted the heritage park people to come over for a final browse, I am going to advertise the gramophone and other items online (once I figure out how), and I’ve already boxed up historical material for the relative who is interested.

Every single photo/photo album in now in Anthony’s cupboard so I just have to do the scanning bit by bit by bit whilst being with him.

And my point in this ridiculously self-indulgent post?

I was stuck at the ‘unfinish line’ and now I’m not. Full steam ahead!

Very grateful for comments and am going to reply to them now. I don’t even ‘get’ why I had such a downer when my new neighbour/hairdresser, Camille, made my hair a wildish red, I met my beautiful mama for lunch on Friday and laughed my head off, met with my best friend Tony yesterday for lunch and Ming bought me Dylan Moran tickets for my Mother’s day present – so many great things.

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Oh and Dina is coming for dinner in a couple of weeks (well, she is coming to cook risotto in her thermomix) so I better get finished with these remnants asap.

My conversation with Ming a few seconds ago:

Me: I’m over my blah finally, Ming.

Ming: How’d you do that?

Me: Got a few things done I guess.

Ming: Jobs, jobs, jobs!

Me: Well we had a lovely time at the dump today didn’t we? [At the dump Ming had yelled out, ‘Mum, this is glorious! We’re not fighting! What a beautiful dump run!’]

Ming: It’s probably due to Sontime.

Mmmm – that is definitely an unfinished conversation!

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The weird experience

The other day I met one of my brothers, BJ, for lunch at the restaurant where Ming works so Ming took his lunch break at the same time. The three of us talked, ate, and laughed together and then, just as Ming was about to go back to work, he told us that on his way into town that morning, he had lost control of his little car on a big roundabout and it had spun full circle on the newly wet roads (it is autumn here so we’ve had some rain).

Ming said that a truck, and its driver, slowed down and witnessed his near-accident but luckily there was no other traffic as it was very early in the morning. Okay so BJ and I digested this information as we finished our meals then we went our separate ways.

At the time, I didn’t quite process that Ming had nearly been in another car accident/caused another car accident/come out of a potential car accident alive/not injured anyone in a car accident that was his fault … and that everything was okay … until I got into my own car to go to the nursing home. I began to perspire….

It was a cool day but by the time I got to the nursing home I was quite hot. I went to sit with Anthony for awhile before going on duty and, as his room is always so hot, because he feels the cold so badly, I thought my perspiration was due to that.

An hour later I was on duty in the dementia cottage and absolutely drenched in perspiration – every single strand of my hair was wet and the carer I was working with probably assumed it was menopause.

Anyway, I did my shift, sweatily and with no conscious thought of Ming’s near accident, then went home, still so drenched in perspiration that I had to put the air-conditioner on in the car even though the weather was cold. Just before I knocked off, Ming texted me saying, “home safe” and I wondered why he would do that because I had completely forgotten about his near-accident experience!

When I got home, Ming came out to meet me as he does and had all of the outside + garage lights on. I got out of the car and this was our conversation:

Me: Ming, I have had one of those sweat attacks – hyperhidrosis or whatever. Look at me – I am drenched!

Ming: Me too, Mum – me too! I was shaking and nearly crying when I got to work and sweating all day.

Me: Is that why you texted me you were home safe?

Ming: Yes! I thought you’d be worried.

Me: To be honest, Ming, I forgot about it.

Ming: So why are we both sweating?

I am quite interested in the fact that my mind didn’t absorb yet another close call in terms of Ming’s safety and yet my body absorbed it like a leaking sponge!

Will the car accident that Ming caused ever leave us? It has strengthened some relationships, weakened other relationships and probably mystified all of us in the ways in which it has affected us, individually – the nephews who went to the scene of the accident, for example; the mother who was overseas when it happened; the guilt we probably all feel for somehow allowing it – I don’t know anymore.

What I do know is that I am grateful, every single day since the accident, for the fact that every single person assaulted by that accident is still alive, still able to flourish, still able to overcome the obstacle of that terrible memory, still able to be.

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Catching up

After weeks of fighting a tenacious flu that kept coming back after each course of antibiotics, I finally got a chest x-ray which was clear (phew!) but my dr seems to think it was probably a case of pneumonia treated with the wrong antibiotics (I saw another dr to begin with because mine wasn’t on duty). So now I am on a fifth course of two different antibiotics and already feeling a lot better instead of a little bit better. It is such a relief because, despite being well enough for my mama’s 80th b’day and well enough to visit Ants most days and to do some volunteer work, it is only now that I am beginning to feel normal well ha!

As my role as ‘care-giver’ has become most of my identity now, I have a bit of a terror problem when I get sick because I am so needed by Anthony so to have been given the gift of a clear chest x-ray is like gold!

I’ve been trying to catch up and re-connect with blogger friends but have now decided to simply read blogs in a from-now-on mode rather than go back to see what I might’ve missed. It’s been a bit of a relief, too, to let go of the self-imposed feeling of obligation to blog every day if I just don’t have the time or inclination. Perhaps someone should write a book about blog psychology because I get the impression that other bloggers often suffer the same kind of ridiculous guilt. Interesting.

My volunteering at the nursing home, though interrupted by this flu, because you are not supposed to go in there if you are sick (paradoxically, this is probably where I first got infected), continues to delight me and I have now sent an ‘expression of interest’ email in response to last week’s advertisement for a “lifestyle assistant” in the dementia wing. This is a permanent part-time position from 3-6pm for someone to provide activities while the nursing staff conduct the evening showers. As I have already been volunteering in this wing from 3-4pm on the weekends, I am familiar with each of the ten residents and have developed a bit of a rapport. Tomorrow I will fill out the application form and hope for the best. I think this kind of arrangement would be a perfect match and hopefully there will be no perceived conflict of interest as Anthony is not in the dementia wing. I am quite excited about this job possibility and the money would be a relief!

Ming has a job he loves at a restaurant called ‘Corners on King’ so he is gradually becoming independent financially and in other ways. He hates for me to make him any food so my tactic has been to make him a smoothie every morning into which I pack a punch of secret ingredients (if you want to know the secret ingredients you will have to email me!) For those who don’t know, Ming has, from birth, had a rather extraordinary unhungryness – long story which I can’t be bothered telling now but my best illustration of this is the 40C degree day, when he was about one, in which Ants and I had to use a syringe to push a bit of milk into his ungreedy little mouth.

The last few years have been enormously challenging with me having to resign from my job as university lecturer; Anthony’s permanent admission to the nursing home; my mother’s horrifying injuries after falling from her bicycle; the car accident and court case and cousins’ heroic recoveries; Ming’s two scoliosis operations; some friendships rekindled and others on hold; peace, joy, guilt and wretchedness in equal amounts; Ming’s short-lived, but loved, dairy worker job abandoned due to his spine; finding out that you really love eggs on toast; and that if you don’t like what you look like, you need to stop looking at yourself and look away…..

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…. and finding out that the width of hope is immeasurable!

Catchya later….

28 Comments »

And on a lighter note!

Last week Ming got his driver’s licence back. He had to do a written and a practical driving test and the very next day we went up to Perth to collect the little second-hand Toyota Yaris (he has christened it “Fran”) that he had arranged to buy with his savings. Obviously our insurance claim on his ute/truck didn’t pay, but even if it had, Ming never wants another ute again so someone bought it for parts and towed it away earlier in the month. The sight of it out in the back yard, for all of these past months, is not something I will miss although it still has a kind of ghostly presence there, slowly fading.

Ming felt there was one last thing he had to do (to move on, I guess) and that was to go back to the site of the accident and remove his P-plate from the tree he’d crashed into. After the accident it had been stuck up high on the tree and we were never sure if the police or insurance people did this to mark the spot for further investigation, or if it was just someone being nasty. In any case, yesterday, Ming took our old ute and a ladder up there and removed the P-plate. He also found bits of debris from the crash so he removed those too and brought them home to be taken to the dump.

Having regained his independence, the angry Ming of the last few months seems to have disappeared and the angelic Ming has returned – haha! In a way I guess we have now come full circle in the sense that he was a newly licenced driver when the accident occurred and now he is again a newly licenced driver but with an older head on his shoulders. So that is that. Or is it?

Naively, I had thought that once Ming got a car and his independence back, there would somehow be a feeling of closure (for me, I mean), but I relapsed last week into some of the feelings described in the last two posts. The closest I can get to describing this is to liken it to waking up just before a nightmare has come to its conclusion, so you never get to “The End”, and you don’t get that phew of relief that it was only a nightmare. Perhaps the notion of closure is a myth we have invented in order to make things neat and tidy again after a traumatic experience. Perhaps it is living with and beyond the absence of closure that makes people stronger, wiser, even kinder. I don’t know.

What I do know, however, is that I have never seen anything as funny as big, tall Ming folding himself into little, tiny “Fran”!

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Beware of the dog: a cautionary tale

I wrote about the accident yesterday, naively thinking that if I regurgitated the stones in my throat, it might be possible to reach a place of calm, cathartic peace. How stupid was that!

The dog was here, again, its initial growl sounding like a lullaby until, once I had written my words down, it began to bark madly as if I had done/said something wrong. So I edited what I had written until the dog swallowed my extra words, until it attacked my thumping heart and painted it red with slices of stillness, until it put its big paw against my throat and whined until I woke up.

Jet black, this dog blends into the evening sky invisibly, sleeps in the pocket of the dark blankets around my feet at night, wakes me up every morning with the audacity of its sudden absence – not my best friend, not my worst enemy, but my closest companion.

Of course I hate the presence of this black dog, and its black eyes, and its black waving tail, and the black fur of its snuggly black snout but recently I have noticed the growing yawn of its absence. Hurray!

That dog was blocking out the sun with its big, dark presence, its ridiculous attempt to be a metaphor, its wolfish editorial antics. Beware of the dog.

I wrote about the accident yesterday, naively thinking that if I regurgitated the stones in my throat, it might be possible to reach a place of calm, cathartic peace. How wonderful was that!

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PTSD

It seems a bit obvious to say that once a disease, or a disorder, has been named, even acronymmed, it exists as a real, recognized condition. For me, this has become an inviolable truth.

PTSD stands for post-traumatic stress disorder and it affects, in horrible ways, those who have been victims of wars, violent crimes, child abuse, terminal illness, and accidents (to name just a few).

When people come out of an experience where they could have died, but didn’t; where they could have been permanently injured, but recovered, there is an unspoken expectation that rejoicing is the correct response.

But is doesn’t happen like that. I wish it did, but it doesn’t.

When my son’s car accident injured four of his cousins and a friend last October, it altered the microcosm of our family world in ways that have been profoundly good, profoundly bad and sometimes a strange mix.

Naively, I thought/hoped that once the children had recovered from their injuries, once the court case was over, once we all forgave each other for allowing that joyride, everything would go back to normal.

But it wasn’t that simple. One mother was in another country that night and had to hear the news on the phone; I was busy in the kitchen and didn’t know my son had taken the kids for a ride; everyone else was outside on the front veranda, drinking, eating, talking and having fun. At some stage, the joyride was casually approved, ignored, disapproved, cajoled, forbidden, unnoticed ….

….until the phone-call: “Mum, I’ve had an accident – everyone is alive.”

I thought he was kidding; I thought he was in his shed with the kids; I even laughed at what I thought was a joke – until I realized. And that was when the rest of us got into our cars and raced off before we even knew where the accident had happened. On the phone, my son had told me the road (just around the corner), but my mind went to mush and I ended up on a nearby gravel road and rang a friend, sobbing, terrified, and she went straight to the accident scene to join my brothers and I went home to tell my mother and sister-in-law.

I found the two women frantic so we then went straight into town to the hospital, all of us crying. When we got there and found all of the children injured but alive, the relief was something I will never forget. I then had to go to the police station and wait (with my beautiful friends) for hours until my son was released from questioning. He was as white as a sheet and shaking and his remorse (he had lost control on gravel) was overwhelming. I then took him to the hospital to see the children after reassuring him that they would all eventually be okay.

And now? Yes, all of the children have recovered after having to be in various spinal braces, leg splints etc. One niece had to be in a brace for months! All of them are fine now, physically, and don’t mind talking about that night but….

We adults are more aged and less resilient and each of us deals with the pstd aftermath differently, and sometimes in ways that are incompatible with each other. The remembered shock and horror of that night will always be part of who I am, and my absolute fear for, and love of, each and every member of my family that night is fierce.

The aftermath has been, and continues to be, a challenge for many of us but, with all my heart, I hope the pstd can abate soon for those of us still having nightmares, crying in our sleep, and waking up with the thud of fear.

I sometimes recreate my mother, my brothers and their families, and my son, into a huge lego castle of compassion and forgiveness and glee in the hope that pstd will dissipate in the sharing of words, company, or alone-seeking mountains. We have all dealt with this near-tragedy in different ways because each of us is an individual and, ultimately, alone. Alone is important and necessary I guess and I love it, but, since the accident, I have discovered loneliness in all of its intensity because I have recognised it in someone else.

When someone wants to be left alone, LEAVE THEM ALONE! Love doesn’t need proximity and sometimes its distance is a gift. It is very difficult sometimes to cope with the love and attention of well-meaning friends and family when you just want to be in your own space and deal with your own stuff without the burden of other people’s compassion.

This is to you, to me, to all of us.

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My son, the honest actor

Earlier today I put Ming on a train to Perth because he has applied for numerous roles in various films, including a music video. It’s mostly “extra” work so not paid but I admire his tenacity in trying to get ‘out there’ as an actor. One of the roles requires him to be a scruffy guy at a strip club; another requires him to be a sophisticated guy at a strip club; and the music video requires him to be a NeoNazi in a story about how a young son murders his Nazi father.

Yes, well, mmmm. Anyway, Ming will be staying with various relatives and friends for the next four days and nights. Tonight he will be staying with my eldest niece and her husband (you know, the beautiful people).
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The following night, he will be staying with one of his best friends, and for the last two nights he will be staying with relatives from Anthony’s side of the family.

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Ming hasn’t gone off for many adventures like this and I just realized that I have never been alone on this farm for as long as four days (one or other of the ‘boys’ would be here), so it feels very strange.

The brat’s interests are music and drama (both of which he is good at, but, even though he has some formal qualifications, these are very difficult industries to get into).

I am hoping so much that he might simply be noticed.

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Before I dropped Ming off at the train station, we went to our lawyer’s office to give him a gift of red wine and he invited us into his space to have a chat. It wasn’t like our previous chats because, now that the court case is miraculously over, we could just be ourselves without the professional distance. I wanted to hug the lawyer (as I had done just after the verdict last week), but I restrained myself.

Ming was told previously that one of the repercussions of the accident was that he might have to do community service by accompanying the police to schools in order to talk about his/our extended family’s experience. We were told last week that this was no longer a necessity but Ming still wants to do this and I support his decision.

In a way, this will be another unpaid acting role but, this time, it will be the real thing. Ming told me this afternoon that he continually replays that night in his head, with ‘what if?’ questions a never-ending dream sequence, and with the ‘why?’ question still hanging its head in shame.

The fact that all of the children who were injured are okay now, in a forever way, spurs Ming on to wanting to warn the rest of us to be more protective, corrective and vigilant – AND to dispel notions of easygoingness when it comes to children, because you just
never
know

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