jmgoyder

wings and things

Macular degeneration

My mother doesn’t like to be written about because she is very private about her life, but, as I’m not so private, I would like, here, to salute her for the following:

When my mother was just in her 40s, Dad died of a heart attack. Not long after that, she developed breast cancer and had to have a mastectomy and chemotherapy. Then, about ten years ago, she began to lose her hearing. Two years ago, she fell and broke her hip and then, just as her hip had healed, she fell off her bicycle and broke her pelvis and wrist. And now she has macular degeneration and has to have six-weekly injections into her good eye to prevent it from getting worse (I took her today for one of these).

Despite all of these situations, my mother is an absolute inspiration to all of us and is as active now, at 79, as she was when Dad died and before. She will do anything for anyone and her volunteer work is beyond belief. She has more energy and compassion and generosity than I will ever have!

After the car accident, six months ago, my mother and my brothers’ families had to deal emotionally with repercussions, injuries and enormous anxiety and yet she always remained calm and in control and absolutely supportive of all of us. My own pain of regret had nowhere to go except to my mother and she helped me to figure out how to keep going. (AND she visited Anthony on all of the days I couldn’t when I had the rotten pompholyx condition).

This kind of mother is rare – the kind of mother you would dream of having – and it doesn’t seem fair that she would now be afflicted with macular degeneration, but she is. A fact. Life. Age. Hardship.

And what is Mother doing tonight? She is probably going to ignore the pain in her injected eye and work on the scrapbook she will give Ming when he turns 21 next January She has done this for each of the grandchildren preceding Ming and she has done it for my brothers and me when we each turned 50.

She is funny, clever, artistic and an absolute legend. And she is NOT old!
She is always NEW!

My/our mother xxx

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The delicious taste of laughter

If I were at a restaurant and was offered a choice of my favourite foods – oysters, fillet steak, pizza, Caesar salad, a cheese platter, a doner kebab, or laughter – I would choose the latter.

If I were at a pub and was offered a choice of my favourite drinks – beer, shiraz, a pink gin, or laughter – I would choose the latter.

If you were to ask me what I would rather do – go for a walk, sleep in, read a book, visit a friend, do a good day’s work, or five minutes of laughter – I would choose the latter.

And, if you were to ask me if I preferred love over laughter, I would have to say no.

Today Ming and I picked Anthony up at around 10am and then proceeded to do a few errands in town before getting burgers and fries and eating them at a park overlooking the beachfront. Ants was very wobbly so we had to eat in the car. I’d given him his 11am pill a bit late so he wasn’t able to eat very well and kept mistaking his fries for strawers (you know for a drink). In the end I had to pretty much feed him half of my burger, but he had a lot of trouble biting, chewing and swallowing, and was dribbling terribly (Parkinson’s disease often affects the swallowing reflex).

On the way home to the farm, as the pill kicked its magic in, Ants began to recover but everything he said was so incoherent, quiet or nonsensical, that Ming and I had to eventually just respond with ‘yes.’ Once home, Anthony became extremely mobile and walked around the farm with and without his walker and at one stage he somehow took his shirt off to get a bit of sun, before coming inside for a cup of tea. But, just as suddenly (about 2.30pm), he became totally immobile and it took me an age to get him from house to car, by which time he was panting from exhaustion (and so was I!)

By then Ming had left us and gone to his shed to do a cleanup so I drove Ants over to say goodbye (it was now 3pm with next pill due at 4pm) and Ming was surprised.

Ming: Are you going already, Dad?”
Anthony: Yes, she just wants to get rid of me.
Me: I don’t know why I bother!

I was very hurt by Ants’ remark (especially by the fact that it was the first coherent thing he’d said all day), and I told him so on the way back to the nursing home. We put the car radio on to drown out the mutual misery until Ants actually whispered something in his new, soft voice. I turned the radio off.

Ants: I’m sorry, Jules.
Me: I can’t believe you said I wanted to get rid of you!
Ants (taking my hand and kissing it): I didn’t mean it.
Me: What do you and Ming want – my blood? I am doing my best!
Ants: I know, beautiful girl. I love you.
Me: I love you too so don’t ever think I want to get rid of you – please!
Ants: Glad I got a bit of work done today and Ming was a great help.
Me: Me too – thank you – I don’t know what I’d do without you, baby cheeks!

[He thought that he and Ming had done some jobs around the farm].

By this time we had reached the nursing home and Ants was totally incapable of walking so I raced in and grabbed a wheelchair and eventually got him into his room, then grabbed two nurses to help him into the toilet, and said a much quicker goodbye than usual.

Why didn’t I just respond to Anthony’s “she wants to get rid of me” comment with laughter? Why did I let myself be hurt? I am such an idiot! He and I have always bantered, so why didn’t I just turn his comment into an excuse for laughter? Well, I will next time, for sure, because these hurtful comments are becoming more regular, so I have to find a way of transforming these faltering conversations into some coherent laughter – yes!

Laughter is a gift that everyone is capable of doing, giving and receiving and it is my favourite thing in the world so, from now on, no matter what, laughter will be my/our medicine.

Delicious!

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“I just don’t understand you!”

Ming and I had a couple of altercations today that were impossible to resolve. This is so frustrating and painful and yet it points to the fact that we all think and feel differently and trying to match someone else’s way of doing both is impossible.

So what on earth do you do with irreconcilable differences? How does a 20-year-old son understand a 55-year-old mother who is trying to understand a 78-year-old husband? The only way, I think, is to accept the different points of view about everything, to accept each other (despite these differences), and to develop a capacity for sympathy. Empathy would be better, of course, but if the other person just cannot fit their great big size 13 feet (Ming) into your shoes, then agreeing to disagree is your best option.

I have always loved the concept of difference but I have never had it thrust in my face as much as the last few years, with Anthony’s declining health and Ming’s growing up. Neither of them understand that, at the center of this dynamic (in terms of age alone), I struggle sometimes to give them both what they need or want. And neither of them even think, unless I remind them (rather vociferously sometimes), that I might actually want to be considered too.

Perhaps love doesn’t require understanding? I am not complaining here (well maybe a bit!), or posing a feminist argument (hell, no – most of the misunderstandings I’ve experienced have been with women); I am just observing that sometimes you just have to accept the fact that you will never agree with the other person.

But you can still hug them and keep your “you are wrong!” thoughts to yourself. Ask Godfrey the gander!

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“I heard it on the news.”

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I was a little taken aback today, when I went up to our little local shop to get bread, and the proprietor said how glad she was about Ming. Seeing my confusion, she said, “I heard it on the news.” I told her about the reduced charges and she said she already knew which was quite disconcerting because we didn’t hear or see anything on the news. Then she said she was annoyed that they didn’t pronounce his name correctly and I laughed because how does anyone who isn’t Scottish get ‘Ming’ out of ‘Menzies’?

Ming and I are glad we didn’t see or hear his verdict on the news although I am now wondering who did. Oh well, I’m sure small town chitchat will only give it 24 hours and will mostly be positive and there is no point wondering. I suddenly realized I have been hiding away a bit by not frequenting the local shop, butcher, post office and petrol station as much as usual. It became a little nerve-wracking after the accident because I was never sure if people would ask me questions or avoid the subject (strangely similar to how people are not sure whether or not to ask about Anthony).

Stigma, embarrassment, acceptance, humility, guilt, miscommunication, shame, empathy, bewilderment, grief and joy; all of these factors and emotions and more have bundled themselves together, over so many months now, that it is difficult to know how to untangle what has become a maze that I have found the exit to. And yet, on opening the exit door, nothing looks particularly different; the grass is still brown from a long, hot summer, the mice and rabbits continue to plague us, the car needs washing, and I am very behind with the house-hold jobs.

I never experienced any sort of anticlimax as each of the children recovered from their injuries; it was just pure joy. And yet now that the court case against Ming is over, the joy of Monday has been replaced with a sense of nothingness which is, I guess, the space of anticlimax that precedes exiting the maze.

Tomorrow, I will exit the maze, having spent one final day within its mystery. I didn’t want to stay there but I had to figure a few things out like how to cope with people’s concern or lack of, how to move on with the newfound grace, faith and compassion I am already experiencing and how to be more grateful for every single moment of every single day, and every single person – especially my brothers’ families and my mother.

Tomorrow, if someone else says, “I heard it on the news,” I will allow my soul to smile as I leave the maze.

Happy Easter.

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Easter Saturday, Parkinson’s disease and a picnic

Today, Ming and I picked up Anthony from the nursing home, took him out to my mother’s place, picked her up, then went down to the foreshore near her home for a picnic. It was a perfect day, sunny, but with a breeze, so we grabbed some takeaway (sushi and chicken rolls) and managed to find a gazebo right near the water. Now that Ming’s back has half healed from his second spinal surgery, he insisted on doing all of the maneuvering of Ants in and out of the car and the walker/wheelchair we recently bought, and, except for when we picked Ants up, he was pretty mobile – bonus!

After our main food, my mother and I went to the nearby shop and bought ice-creams for dessert, two banana paddlepops for Ming and me, a magnum for her and an ice-cream sandwich for Ants (he loves these). We were surrounded by seagulls of course and Ming, like a little boy, loved chasing them away.

Then we went for a long drive around the estuary until we got to a semi-hidden beach where Ants said he wanted to have a swim. Having never swum in his life, this was a funny request, so we simply drove back slowly, dropped my mother off at her house, then headed back to the nursing home.

On the way back, Anthony became even quieter than usual, knowing, I guess, that the outing was nearly over, so I turned the car radio up and the three of us bopped a bit, with Anthony tapping his leg and Ming complaining that the radio station was too mainstream and that Ants and I had no taste – brat!

Once we had delivered Ants back to the nursing home room, and got him comfy in his armchair, he was showing signs of fatigue, confusion and the kind of misery that sometimes hits him when we depart. He loves the way Ming and I banter, so when we leave him, despite turning the television on for him, I can see how the silence of our absence hits him. I can see it in his face when this happens because he raises his chin a bit, sort of defiantly, and gives us a glare that is a mixture of love and grit.

He knew that Ming and I were going to a barbecue tonight at a friend’s place and that it would be just as impossible to take him to this as it would be to have a swim in that beautiful ocean. Usually I don’t tell him about these social occasions, so that he doesn’t feel left out, but this time I had to in order to explain why we had to go.

If it weren’t for the various photos I’ve taken over the last few years, I probably wouldn’t see as clearly how much Anthony has deteriorated. The photo I’ve included here is from a bit over two years ago when we were still able to do the restaurant thing easily. Back then, he was more upright, more mobile, more able to eat using a knife and fork, more vocal, more himself. Now, going to restaurants or to people’s houses for a sit-down meal is very hard because, with PD, he is only able to focus on one thing at a time (one voice, one activity, one sound), so the picnic idea was much easier.

When we picked Anthony up this morning, the nurse-in-charge said he had become aggressive again, punching out at the carers, and swearing (totally out of character), so I promised to have a word with him and I explained to her that it is part of the dementia engulfing the PD. She nodded in understanding but when I mentioned it to Ants he just muttered that he had to fight because he is often kidnapped.

I am sad, yes, but no longer ‘tragified’ because what would be the point? This is only going to get worse, not better, so the four of us just have to accept this and do the best we can (I include my mother in this foursome because she is a rock and very much a part of our own little family dynamic).

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The maternal conundrum

Mothers

Sometimes we want them to get lost, stop interfering and giving advice, and to stop implying what we should do/be.
Other times, we limp, bruised and bloodied, into their laps, for the kind of hugs that nobody else can give.

On my bulletin board I still keep a note that Ming wrote some months ago – “Stop mothering me!” At the time, he was referring to my overbearing attitude to his diet, so I stepped back from this, finally willing to let him fend for himself.

But. tonight, it kind of went the other way because Ming was asking me why I had taken so long to be okay again, since the car accident. My response was sarcastic: “Not sure, Ming – might have something to do with the fact that five kids were injured?”

Ming: But, Mum, they are all okay now and I always knew they would be!

Me: Well I didn’t know for sure, so I was terribly worried.

Ming: So, Mum, please can you stop worrying now? They are all good!

Me: Okay. I am still reeling from the court case result and can’t quite believe it, Ming.

Ming: Just accept it, Mum – it’s over now. Stop (s)mothering me!

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Effervescence!

Ashtyn is my eldest niece and she has the gift of effervescence in spades. Recently, she, and her Scottish beau, were married in Edinburgh but have now returned to Australia to settle in Perth.

There is something so sparkling about Ashtyn that, no matter what anyone else is going through, she lightens it up with her smile, her positivity and her wisdom. As her aunt, I respect her and applaud her for all of her accomplishments and for her ability to love each individual in her ever-expanding family, not just with sentiment but with a roll-icky humour. She actually reminds me sometimes of my own father, “Dad” who died before ever seeing her. Dad was mostly pretty serious, but when he broke out into humour it was amazing.

Ashtyn’s humour is contagious; she has a way of making you feel good even when you are feeling bad and I now realise that she is the epitomy of effervescence.

Happy birthday, Ashtyn!

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Dancing

The following poem was written by my mother, Meg, before any of us knew the outcome of Ming’s court hearing on Monday. I thought she’d written it for Ming and that he was the gymnast, then I thought it might be for me because my hope was faltering; then I thought it might be for Anthony whose mobility is deteriorating; then I thought it might be for the various family members who have been affected by the car accident; then I thought it might be for all of us – everyone….

I now think Meg’s poem was all of those things, but it was mainly for our big, loud, dancing Ming!

Focus. Meg. April 14, 2014

A gymnast
On the balance board
Looks steadfastly
Towards that spot
Far in the distance
And his body
Perfectly in tune
Glides smoothly forward
Step by step
Unfaltering.

The tiniest distraction
Left or right
Behind ahead
Above beneath
He falls

Resolves next time he mounts the board
To fix his eyes
On One who beckons.

The board seems now so wide and safe
His toes spread out
His balance now regained
Secure.
A joyful happy jig.
The tightrope turned into a dance floor
Music
Laughter
Joy.

Thank you, Mother.

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PS. I think I need to get a new photo of Ming dancing because I am quite sure I have posted this one before; I also need to throw those obscene green shorts (that I bought Anthony for a joke over 20 years ago) in the trash. Why Ming insists on wearing them constantly is beyond my comprehension!

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Question: How many times do you begin again?

Answer: Every single day.

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Ming's Christmas present 2010 - 'Black beauty'

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Julie and Woody best

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EVERY
SINGLE
DAY

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The Verdict

Good news! In fact it is the best possible outcome and even the lawyer is gobsmacked. Today, in court, the police reduced Ming’s charge of “five counts of dangerous driving occasioning bodily harm” to “one count of dangerous driving” and they deleted “bodily harm” from the charge (this was the most surprising thing since the accident did cause bodily harm).

The penalty is a $500 fine plus courts costs, and Ming loses his driver’s licence for three months. Considering he was facing the possibility of a $15,000 fine, a two year suspension of his licence, and maybe jail time, this is absolutely amazing!

Thank you so much for all of the comments on yesterday’s rather melodramatic post (which I have now edited into something less melodramatic ha!) I am also deeply grateful for the support and prayers of our family and friends, the character references for Ming, and for your patience with my moodiness.

And to God: thank you for restoring my faith, and my breath, and for the fact that we didn’t need the $4000-per-day barrister after all!

Tonight we are celebrating my eldest niece’s birthday and she was sure it would be a double celebration with good news for Ming. I wasn’t so sure and my optimism was limpy.

Then, this morning, at the lawyer’s office, when he told us that there was still no answer from the police and said it may well be another adjournment, my optimism tripped over and fell. “It’s like the Samuel Beckett play, Waiting for Godot“, the lawyer said, and Ming guffawed while I tried to smile. An hour or so later, Ming and I were sitting in the court’s waiting room rather listlessly when the lawyer came out of the courtroom itself and beckoned us in, whispering, “Godot has arrived”, then he went to talk to someone else. I looked at Ming with wide eyes:

Me: What does that mean?
Ming: Duh, Mum, the charges have been reduced!
Me: But why can’t he just say that?
Ming: Because he likes to speak in metaphors.
Me: But are you sure?
Ming: Yes!
Me: Well I need to hear the actual words.

And half an hour later, I did. Yeeha!

It’s over.

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