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Onwards and Upwards

Nine years today since our world turned upside down.

I was reminded this morning on facebook, how could I forget, by all the posts that I had done over the years gone by.

They are, each and every one, very sad.

This year, things are different.

John has made enormous progress. He moved rooms in the nursing home to an area where there is not so much dementia and, as a result, sleeps well. He has his own bathroom.

Two little things that make a huge difference.

He went to an art class late last year and he’ll be going to more, thanks to NDIS funding.

There’s now gym every week. A normal gym where he goes into the zone and works out as hard as he can go. Thanks Steph!

He’s calm, no more lability.

Life is on the up, both for John and for me and our family.

We’re working hard. We’re buying food and cooking meals.

I shower every day, wash my clothes and bedding. This sounds awful but for a long time I didn’t care.

I’m thinking of buying a bicycle!

Love to all of you who have given so much support and love over the last nine years.

My gratitude is now the only thing that makes me cry.

This painting by the man who was never supposed to wake up.




Today it is eight years since John had his stroke. The week has also included Valentine’s Day.

John and I didn’t usually make a big deal about Valentine’s Day but that year he planned a weekend away. So we went the weekend before.

We had a beautiful room in the Blue Mountains looking straight down the Jamieson Valley. The weather wasn’t brilliant and the valley was full of clouds and fog. All part of being in the mountains.

We sat on the balcony on the Sunday morning and watched as the weather cleared and the glorious vista came into view.

John reminded me that I used to sing the lullaby “Down In The Valley” to our children to put them to sleep. I had completely forgotten because the children were by then young adults and it had been so long ago. It was lovely sitting there and being reminded.

Ten days later I sang that lullaby to him in the ICU so that the sedatives could be kept to a minimum. One nurse said, “keep on singing, it works.”

If he hadn’t reminded me of it the week before I doubt that I’d have thought of it. It’s a bittersweet memory for me.

Here’s a link to the song for those of you who don’t know it.

I’m walking this month to raise funds for stroke awareness and stroke rehabilitation. I’ve commoitted to 300km for the month of November, an average of 10km per day.

Today, my birthday (I’m 54) I walked 11km.

Walking.We all do it, every day.I spend most of my time figuring out how to do as little as possible.

However, doing the walking over the last eight days I’ve been thinking.

Life is a lonely walk at times, no matter how many people join you and no matter how much love surrounds you.

I had a wonderful day, with the added bonus of discovering a beautiful new walking path very close to home. It leads through parks down to my favourite beach.

But there was a big hole in the day. John didn’t share in the celebrations.

I’ve finally realised that that I’m doing this walk on my own. This month has become a metaphor for the long, lonely walk. Not just mine, but John’s.

If you would like to donate to the cause of stroke rehabilitation, here’s the link:

We’re all doing the long, lonely walk.


Sitting outside

In a cool, spring breeze

Feeling chilly.

Why am I still here?
Now is the time.
Walk back in, and see
My stupid, messy house,

 and dilapidated couch.

I’m not sitting on it.
That’s how my children will see it.

Turn off the television,

Go to bed.


I was eating some rather smelly washed-rind cheese this evening.

I’m rather fond of the stuff, every now and then.

I remembered a time (back in the day) when I had bought some and it had stunk out the car in the time taken to transport it from shop to home.

John was rather cranky, I laughed at the crankiness.

Because cheese is delicious!

A few hours later I understood the crankiness because the car was still stinky.

This is a memory that only I now hold. John has forgotten it.

It is now only mine.

I remember the crankiness, laughter.

And the understanding.

Lost in Translation (Collaroy)

Today I lost my phone.

When I say lost, I mean that it fell down a drain at Collaroy. It’s now most probably floating out to sea with some grommet.

Every Saturday morning I visit my dear friend Jo at Hair Salon Des Arts at Newport. I’m happy to be the guinea pig for her apprentices to learn washing and blow-drying. It’s fun, we have a laugh, and she is a darling friend.

Today I decided to stop in Collaroy and pick up a coffee and a toasted sandwich. All good. Headed back out to the car with said coffee and sandwich, climbed in, chucked sandwich and handbag on to the seat beside me whereupon the phone flew out of the bag and landed between the passenger seat and the door. I toyed with the idea of travelling ten minutes with phone out of reach (even though I don’t look at it while driving) and decided to go around to the other side of the car and rescue it. Just for my peace of mind.

Around I went.

I noticed the big drain below the passenger door.

The thought occurred to me that perhaps the phone was against the door, and that when I opened it, the phone may fall into the drain. I chose to ignore that thought. Well, almost. I stuck my toe under the door where I thought the phone might be.

I was wrong, phone went down the drain. Bounce, bounce, plop. Into the darkness.

At that moment I felt completely alone. All the comfort I take from being connected, from dear friends knowing where I am via various apps, was gone.

I thought about calling someone to help me to retrieve it but know in my heart that my “best friend” was gone. I needed to get in touch with my son but couldn’t remember his number. Hell, I couldn’t remember any numbers. My mind went completely blank in panic. Finally, between Collaroy and Newport, I remembered one number, the number with which I’d grown up. The Dad’s home number. I called him, asked him to call my son and tell him to get in touch with me before he went away for the weekend.

That sorted, I remembered one other number, my best mate (and boss). Called him from the salon and told him what had happened. We agreed that I’d done a really good job of losing my phone as I had no insurance, and hadn’t backed up for nine months. This is why he likes me. I don’t do things by halves.

What has done me in is my reaction. I wander the planet with phone in pocket, feeling connected. Suddenly I was on my own and it made me feel desperate for a while. Noone really knew where I was and I was completely disconnected.

There was a minor panic.

To say nothing of going to the special hell that is Warringah Mall on a Saturday afternoon to replace the phone. Plus, what would it cost?

Anyway, my hair looks really nice. It’s a bit shorter.

I gritted my teeth and headed to the Mall. A darling young fellow sorted it in ten minutes (thanks Vodafone) and I now have a new phone at no cost. I’ve lost nine months of data but so what? I now have my real and imaginary friends back around me.

My response completely surprised me and made me think. How could I have felt so helpless without my phone?

There was a feeling of responsibility: nursing home can’t reach me, boss can’t reach me, family can’t reach me. (Yes, there are days when it goes in that order. After all, the kids usually know where I am.)

My need to feel needed was thwarted because noone could reach me. My need to reach out was rendered impossible.

Apparently I’m a cog in the modern engine.

I’m now connected, once again.

Seven Years

Yesterday marked the seventh anniversary of that cataclysmic day.

Seven years, where did that time go? That’s what people say when they speak of their children growing, time passing, growing old.

John’s stroke was always going to be the five-year project, something we’d get through, overcome. Some lessons have been learned since then:

You can’t put a timeline on a brain, or a body.

Friends will appear where you least expect.

Old friends will react in their own way and there’s no judging because they are also feeling the loss.

New friends come along and you feel that you’ve known them forever.

And John doesn’t know who they are.

Our beloved children have grown up and are making me (us) proud, and I don’t really know how that happened.

Some very dear people of whom I thought badly have turned out to be the best friends of all.

Thank you.


It’s Sunday, a balmy summer evening in Sydney with a cool nor-easterly blowing in. I’m knitting.

I’ve had a difficult few months. The optimism I’ve always had, and treasured, deserted me and I had been wondering why I should even try to continue living.

Last Sunday I took advantage of a rare coincidence of a free few hours and a sense of well-being. I took myself into the city and went to a shop that sells beautiful knitting yarns.

I’ve always been a knitter. My mum taught me to knit when I was about nine years old. It’s one of the most treasured gifts that she gave to me. When she died, all I asked for were her needles and patterns. I have those old patterns, marked all over with her notes and amendments, all her old needles, battered and some bent. Many of those needles and patterns had been passed down from her mother.

I haven’t been able to knit since that awful year when she died and John was so ill. I’d tried a few times but couldn’t do it.

So it was a big thing visiting that shop last week.

Anyway, I bought the yarn: soft, white pure wool 3-ply. For a baby. I’d heard that friends are expecting their first and I figured that not many babies receive a hand-knitted shawl these days. This baby will receive one.

So I began this week. I chose an old-fashioned lacy pattern and it wasn’t until I began that I remembered I’d knitted it many years ago, for another baby. I don’t know where that baby is now but I hope it gave him comfort. My fingers remembered that pattern.

I’ve begun on the rather boring (to a knitter) stocking stitch foundation for the shawl. Next week I’ll move on to the complicated lacy border which will take months to complete. As I knit I remember all the happy things that have happened in my life and how lucky I am.

I’m hoping that as the shawl grows, so will my optimism and calm return; that as I produce something beautiful I will grow something beautiful again in my heart.

When Spring comes, there will be a baby, a shawl, and hope.
Knitting 1
Knitting 2

If I Go Now

If I go now

There’ll be

No more

Wondering if I did the right thing

No more

Wishing I’d been a better mother

No more

Money worries

and what will we do when we can’t live here any more.

No more

Wishing I didn’t have to work so hard

While trying to find ways to work harder.

No more

Being a bad friend,

Not making the effort.

No more

Not taking good enough care of the new little boys.

There will be

Sleep, eternal sleep.

If I go now,

There’ll be no more


Laughs with my children

Sitting by the ocean

Laughing with my friends

Cuddling the little boys.

If I go now

I couldn’t forgive myself.

Call the Ambulance

For almost all of the time that I have known John, he had asked me to promise, and I did, many times, not to call an ambulance if I found him unconscious.

He knows how I think, that I put great faith in modern medicine, and that with love and support and science, any medical problem can be overcome.

He also had a belief that he would be dead by age 48, the age at which his father died. He was 46 when the stroke happened, he’s 53 now.

So I had promised, many times, that I would not call an ambulance.

That Monday morning, when I couldn’t wake him, I was torn. I wanted to honour that promise.

Our daughter was telling me that we needed an ambulance and I explained. Her response: “Well I didn’t make any fucking promises.”
So the ambulance was called. I was relieved, because I know in my heart that I’d have done the same.

These promises we make are made on an intellectual level, at least so for me. At the time of making those promises, I really believed I’d stick to them, and perhaps I would have if our daughter hadn’t been there. I really don’t know.

I have asked John many, many times, if I did the right thing. He always says yes.

I wonder though, what our lives would have been like if the ambulance hadn’t been called.

I certainly wouldn’t have spent a year next to him, unemployed, because I wouldn’t leave his side.

I wouldn’t be watching him live a half-life.

Our children would only have a memory of him as a strong, loving man who looked after all whose he loved and could be counted on, no matter what.

Instead they now live with the reality of their once huge father living in a nursing home and dependent upon strangers for his daily needs.

So their memory of their father will always be coloured by what has happened in the last (almost) seven years, the ongoing pain of seeing him completely dependent upon others, with limited communication and cognition.

As their mother, I wish that I hadn’t woken that morning, or that I’d had the strength to not call that ambulance. I’d have saved them so much pain.

I know though, that I’d have broken that promise, even if I’d been on my own, because of my faith in medical science and because I believe, still, that where there’s life, there’s hope.

And that old bastard just kept on breathing!

I’ve asked John, so many, many times, “Did I do the right thing, calling the ambulance?”.
He always says yes.

And I always wonder, knowing him, if he’s trying to make me feel better.

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