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The Plumber, His Missus, & Her Brain Tumours, North Haven (2025)

25/09/2025

GRIEF IS THE PRICE WE PAY FOR LOVE

This is the week where a piece of me broke. My cousin Julia died very unexpectedly in London. We never met, but nevertheless shared a special connection. I don't have the words to describe the absolute tragedy of her life. May she rest in love.

Then on Tuesday I had the privilege of interviewing an amazing woman-Emma. In 2010 Emma met Blake. They fell in love, got married & had a beautiful daughter named Sophie. Four years ago their life went in different directions, but they remained close. In July of 2024 Blake was diagnosed with a rare, aggressive cancer.

He endured absolutely brutal treatments, and gave it everything. During this he & Emma found their way back to each other, she told me that his courage has been an absolute gift. Blake is 40 next month, his prognosis means he is unlikely to be here to celebrate it.

As I spoke to Emma I could clearly hear her strength and the immense love she has for Blake.

So if you can be anyone this week, be Emma and Blake. Model courage and express love.

Pic description

A screenshot which reads: My Grandma told me,
"Marry someone you can suffer with."
I used to think that was sad.
Now I understand.
Love isn't who takes you to dinner.
It's who holds you when you're drowning.
And builds you a boat.

21/09/2025

BUCKET LIST ITEM ✅️

If you know me at all you know that marrying Jason Momoa is the #1 item on my list. But item #2 is not something I've ever vocalised. Mainly because I honestly felt there was more chance of me becoming Mrs Momoa than achieving this one!

My maternal side of the family includes several journalists & authors. My earliest memories are of being a voracious reader. And my secret hope was that one day I too would have a paid piece of writing published.

Well I did it.

In fact I've done it 3 times in the last few weeks. And I'm planning to do it again.

Thanks to everyone who has praised my writing and reads my blog. On the days (like today) where I struggle to get out of bed the encouragement helps.

Rach x

Photo description
Photo of a newspaper page

06/09/2025

I AM ENOUGH

I contemplated several topics this week. Spinal Cord Injury Day, my very recent birthday, and my daughter's hens event.

Then last night we went to a show where I watched a frail, elderly lady struggle to walk. And I realised what I needed to write.

WE HAVE TO STOP DEMONISING MOBILITY AIDS. And yes I'm yelling as I write that. A few weeks ago I went to an art exhibition where a blurb about an artist stated that he was: restricted to a wheelchair.

No he wasn't. He also wasn't bound to a wheelchair. Or confined to a wheelchair. Rather he was a wheelchair user. So I emailed the gallery to draw their attention to this problematic language. [I know some of you are rolling your eyes as you read that.] But here's the thing, a wheelchair is an assistive device. As are glasses. But you never here anyone say, look at that woman, she is forced to wear glasses.

Often comments are made about how using a wheelchair means you have given up. You know you should try harder to walk. And the absolute doozie, you're too young to be in one of those. Yet as my very erudite Cousin Nathan pointed out, when we see someone using pot holders to get something hot out of the oven, we don't gasp and say oh do you REALLY need those? And you shouldn't be using those at your age.

Why does all of this matter? Because people internalise the negative language around assistive technology. And as they age they resist using devices that would make their life simpler, safer, and more enjoyable. They feel it will diminish them in some way. It doesn't, it enhances your life.

So do me a favour, watch your language.

And guess what? My wheelchair moves faster than your feet walking.

Photo description
A group of 8 people, mixed male and female. Seven of them wearing red heart shaped sunglasses, in the middle is my daughter PJ with white, pearl beaded, heart shaped sunglasses & a veil. Everyone is smiling & holding up paintings of Mt Fuji.

22/08/2025

THE GIFT OF TIME

In the last 3.5 years I've found the people that assist me fall into 3 broad categories.

1. Friends/Family who are there because they love me.
2. Allied health professionals, medical staff, support workers. They genuinely care, but are also doing their job.
3. Randoms. They see the wheelchair or hear the story & want to join the pity party.

I've spent the last week at a wellness retreat run by the beautiful Brooke Elliston Yoga. She organised a group of 10+ ladies to volunteer to come to the retreat & be 1:1 assistants to help myself & 5 other spinal patients. These amazing ladies gave up time with their families, they put aside their paid work, and they incurred travel & accommodation costs. At the end of the retreat as we profusely thanked them for the generous gift of their time, they insisted on thanking us. They were grateful for the privilege of assisting us. My heart is SO full.

Since diagnosis I've had frequent encounters with the floor after falls. This retreat was my first time being on the floor intentionally since surgery. Completely amazing.

Extra special gratitude to my assistants: Talara, Libbie, Lauren & Steph.

Check out the comments for a video of me doing one of my favourite things: heading down a hill with my arms in the air.

Pic Description
1. Me lying on my stomach on the floor with my head raised like a turtle. I'm smiling. On the left is Libbie. She is also smiling.

2. I'm sitting on the floor, propped up against cushions, with my legs stretched out in front of me, & smiling. On the left is Talara, on the right is Lauren. They are smiling.

16/08/2025

BIRTHDAY BEAUTIES

When I was 9 years old my mother moved to another country, and I grew up with my dad and my brother. This created ripple effects that I still feel today. On the one hand I often find men easier to understand; on the other I subconsciously seek connections to women, particularly in a maternal sense.

I've been incredibly privileged over the years to enter the orbit of some absolutely spectacular women, too many to list. But it has reinforced for me that social connection within the female space is so important.

This weekend two beautiful women are celebrating their birthdays, and I want to take a moment to honour them.

Julie Englefield, I have known you for 40 years. Yesterday, (on your birthday), you sent me a photo of the bathroom in a holiday house that you're hoping is accessible enough for me to visit with you. That one message sums up your thoughtfulness & generosity of spirit.

Selena Purdom my beloved stepdaughter, but more than that, the sister of my heart. The very first words you ever spoke to me were: thank-you for making my dad so happy. I've loved you from that moment.

Happy birthday my queens, you are a reflection of the strong women who brought you into the world, and those who raised you.

Rach ###

Photo description

1. Julie with short dark hair & a bright flowery top, standing next to John who is in a blue shirt. It is a sunny day, both of them are smiling.

2. A selfie of Rach Thorpe & Selena. They are both smiling. (It is Rach & John's wedding day.)

02/08/2025

I'LL BE THERE FOR YOU

As a child growing up in New Zealand, the ocean forms a part of my earliest memories. Those cemented in my later life as John and I walked hand in hand through the sand of countless beaches.

On Tuesday the seas at Collaroy Beach were flat with gentle little waves. So when Anthony & Sacha, two of the awesome recreational staff from Sargood On Collaroy offered to take me for a swim I was elated. 40 minutes into the excursion we were several metres out in chest deep water. It felt amazing. When your body no longer functions as it should, there is immense relief to be found in the weightlessness of just floating.

Without warning I started having a seizure. The next bits are blurry. But two things stand out. Anthony holding onto me, not breaking eye contact. Repeatedly saying my name, telling me he had me, & that I was safe. Sacha's hand on my back and the warm, confident reassurance that flowed from that.

As I reflect I think how challenging this must have been for them. Being responsible for a disabled person having a medical event in the unpredictable environment of the ocean. They were consummate professionals. And they are legends.

Anthony & Sacha, you'll always have a piece of my heart.

Rach Thorpe x

Pic description
1. Selfie in front of the beach. Rach is on the left, Sascha on the right. They are both smiling.

2. Photo credit Holly. Anthony wearing a navy outfit & cap. He is down on one knee & has his arm around Rach in her wheelchair who is wearing a patterned top, jeans, & pink fluffy socks. They are both smiling.

25/07/2025

I AM HOME

My current NDIS plan funds 28 nights of STA per year. STA stands for Short Term Accommodation. It enables disabled people to have a break from their informal supports & engage in capacity building activities that align with their goals.

Blah blah, but what does that actually look like, and where are your tax payer dollars being spent?

For me STA is held in a purpose built facility for spinal cord injury patients in Collaroy. It is such a fabulous place to work that staff rarely leave. Which means when I arrive I'm greeted by name & everyone is aware of my insane Jason Momoa crush.

Being purpose built means EVERYTHING is accessible & I have a huge level of autonomy. A massive range of adaptive equipment means that I can engage in activities I wouldn't normally be able to do. I also get to socialise with other people with spinal cord injuries.

My current 2 weeks are extra specific, I'm having wheelchair 'driving lessons' with Dave the OT and intense one on one gym sessions with some fabulous physiotherapists & exercise physiologists from Queensland.

Being here is life changing & I'm so very grateful.

Photo descriptions

1. Rach sitting in her wheelchair smiling. On the left is Elisa who is resting her hand on Rach's shoulder while smiling. On the right is Holly who is smiling.

2. Rach standing up attached to a tilt table. (50 mins in this, the longest stand in 3.5 years.)

3. On the left is Anthony in sunglasses & a helmet, in the background is Bella in sunglasses & a helmet. They are both on bikes. On the right is Rach sitting in an adaptive bike with hand controls. They are on a bridge.

4. Rach sitting on an adaptive bike on a sunny day, looking out to the ocean.

18/07/2025

THIS IS NOT THE LIFE I SIGNED UP FOR-CAN I HAVE A REFUND?

I try & write as positively as I can, but sometimes keeping it real means getting gnarly.

Our bathroom is not overly accessible or safe. But while we wait for NDIS to hopefully approve funding to rectify that, we make it work. Mostly.

On Wednesday night I fell getting out of the shower. I had also managed to inadvertently lock the door. So John & our youngest Sass had to get in & pick me up. I'm ok albeit in pain. What hurts the most & caused the bulk of my floods of tears is the sheer humiliation. At 53 I don't have the bodily autonomy to be able to shower on my own whenever I feel like it. And that sucks.

Thank-you (sarcasm) to the person who said: on the bright side John wasn't in the shower with you. Because he'd be traumatised now 🙄. Yeah alright it was a little bit funny. 😛

Photo description
Photo by me of the breakwall near us at sunset. A reminder that no matter how I might rage, the sun will continue to rise & set.

11/07/2025

MODELLING INCLUSIVITY

I was recently privileged to attend my first ever resin workshop. It wasn't easy. I was panicky before I went, new environments & people are scary these days. I'm not sure how everyone will react to the wheelchair. And whether I'll be able to do the things I want to do.

But, I did!

A lovely welcoming atmosphere, and despite having zero artistic skill I managed to do something I loved. Katalin went out of her way to ensure that I could participate fully. The reality is it's not that difficult to accommodate me, but not everyone is prepared to.

Look out Picasso, here comes Rach.

Photo credit Flowsation

Photo description
Rach wearing a white t-shirt sitting in her wheelchair. She's smiling.On a table in front of her is a large white butterfly which she is adding bright pink resin to.

06/07/2025

LOVE IS......

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Pelican sitting on the wharf at Laurieton. The water & sky are blue.

Rach & John with the Laurieton wharf in the background. Both are smiling. John's hair is blowing in the breeze.

22/06/2025

SHOW ME THE MONEY

May is Brain & Spinal Cord Tumour Awareness month. I usually post a few times with statistics. I didn't this year as I just couldn't find the words.

Bottom line: brain & spinal cord tumours kill. Benign ones. Malignant ones. Big ones. Small ones. They sit in the body's operating system & wreak havoc. And those that survive are never the same. Survival rates have not improved in 30 years.

As we head into end of financial year, if you're in a position to make a tax deductible donation, please consider: Brain Tumour Alliance Australia (BTAA) or Dainere's Rainbow , because this list of names gets longer every year.

In loving memory of:

❤️Adam
🩷Angela
🧡Benjamin
💛Dainere
💚Gretel
💙Harry
🩵Jaxon
💜Josh
❤️Lauren
🩷Lorna
🧡Ruby
💛Taylor
💚Ulli

Photo description
Photo credit: Neeks

Rach sitting her wheelchair in jeans & a burgundy wrap. She is smiling & resting her head on the shoulder of one of her great loves-her son. He is crouching beside her wearing black shorts, green hoodie & backwards cap. He is smiling.

13/06/2025

I AM NOT A BILLBOARD FOR YOUR BUSINESS

Warning: incoming rant.

I have two support workers that periodically take me out in the community. Both in my age bracket. I believe that when people see us together, they imagine we are sisters or friends or cousins on an outing.

Why is this important? Because my privacy & autonomy are important. Randoms do not need to know that I'm out with a support worker unless I choose to disclose this. A key tenet of NDIS is that I have choice & control. This is part of that.

So where's the problem? This occurs when support providers require their support workers to wear uniforms with logos, lanyards with ID cards, and vehicles emblazoned with their company name while they are out with participants/clients.

Why?

Because it's free promotion for them. It does not benefit me in any way, shape, or form. Unless you'd like to start paying me for the privilege of using my disability as part of your advertising strategy?

Photo description

A new 'hubcap' on my wheelchair. Black background with swirling pink hearts. The only kind of advertising I need. Looks amazeballs when I'm free-wheeling down a hill with no hands. (If my Parentals are reading this, obviously I NEVER do this because it would be dangerous 😂🫣).

Colour My Wheels I love these!

The Plumber, His Missus, & Her Brain Tumours