(Image: Pendulant, acrylic & graphite on linen. Wonderment exhibition at Queenscliff Gallery & Workshop)

That was my endnote for 2019.

As life evolves within my 3km radius, I find myself looking back less and less and looking forward more and more.

Bitter, defines the heartache of not being able to see loved ones as often and the missing perks of our previous city life.

Sweet, is being defined by new friends, the gallery, our new home and the sea that surrounds us.

As for confused, another year has passed and I still don’t feel anyone can quite define what’s going on with my body.

Does it matter heading into a new year?

Confusing Definitions

First allow me to specify – I’m talking about ongoing, chronic neuropathic pain.

Chronic pain is defined as pain that continues past 6 months. What I’m referring to (and always have referred to) is pain that continues far further than that… further into years.

I believe there are two steps there, not one. I believe there is a difference but I can’t prove it.

Another thing I believe – that I can’t prove but am not confused about, is that we all experience pain differently.

There are layers. There is a variation of intensity within those layers, a variation in the ability within the layers, and there’s the question of whether the pain will go, stay and in what capacity it will go and/or stay – it’s a unique scenario to each of us.

No one can formulate a fix for all situations. No one should say they can.

I don’t think anyone can prove they hold the definition of pain. No one should say they are certain of anything when it comes to chronic neuropathic pain.

We’re all just hovering in a moment in time. We’re here with a load of ‘findings’.

What I know for certain

My experience shows me two things help me manage pain:

  • Adapting my day-to-day life
  • Neuromodulation

That’s been certified for me! And this does not confuse me.

I think of the pain world as a pie that is made up of:

  • Consumers – people living with pain
  • Managers – pain professionals and scientists
  • Followers – pain organisations/government

People are being presented stats and data and everything we ‘learn’ and every treatment explored seems to be another trial.

As humans and sciences evolve the advice will continue to change. And then change again.

We can’t know for certain that what we hear right now is correct or incorrect.

The Followers are just preaching what they hear. They offer nothing.

People in pain are really all alone. Alone with pain.


The diagnosis is chronic neuropathic pain.

That’s what my experience was titled and that title suits any experience of long-term neuropathic pain I believe.

I’ve learned not to demand more or less of this title.

Any other definitions surfacing have not been able to provide clues to further my pain management or to help solve my problem.

I find the nitty-gritty of science and various beliefs offered to a patient are kind of thoughts in the air… more ideas to try.

My personal developments and failures didn’t stem from what I read or learned, they stemmed from my experience and through the moments I spent with pain.

I didn’t meet spasm on a page, I met it through flinches on my skin and strange toilet functions.

I didn’t burn my fingertips reading about a flare, I felt it on the inside of my pelvis.

And I certainly didn’t gather my initial understanding reading pain research or after I visited my GP or pain specialist. I had experienced this pain for 4.5 years before I was delivered the title.

I look back now and can see that all I heard and read about living with pain, I knew already. And today, all I hear and read about living with pain I know already.

I remain confused by the information about this experience that’s on offer because it usually identifies characteristics of my experience without giving me a solution.


In 2014, Dr John Quintner contacted me to wish me luck before my first-ever presentation (at the Alliance for Improving the Management of Pain).

I’ll never forget his words as he was trying to encourage me – I was so nervous. What did I know in comparison to the 200 pain-interested professionals that were attending this conference? What could I possibly have to tell them?

‘Remember, you will know more about pain than anyone sitting in that room’

My physical, day-to-day living – that is each second in time with this experience, is what guides me to the next.

I may be guided to another flare or to an hour of pristine pain-free time but that is the truest fact of what pain is.

In my new life, I believe I have gathered the best treatment possible and see the best specialist. I’ve always had the greatest possible attitude to management throwing myself into as much research as possible. And my complex health files are in super order.

With or without my confusion, I know what I’m doing each day now – I just don’t have any meaning for the experience or the solution to the problem.

I’m getting used to being in my state of pain confusion. I am recognising it as the way of my life. So do I need to keep reading and searching?

I might just stay right here, in: ‘I don’t have the definition of pain but I’m establishing a way to live with the experience’ and rather than lose more time searching for meaning, spend time progressing my new life further.

To be honest, even if the world’s greatest health scientist, the Great Oz, Darth Vader or a talking dog were to deliver a definition of pain to me right now, I don’t know I’d be able to believe them.

I’ll believe a definition when I experience the solution.

Until then, I’m going to sit with my confusion, my bittersweet new life and with what I’ve learned from my experience because it’s as real as I’m going to get. And it’s as proven as it’s going to get.

It has provided me with the best direction so far and the most information I can bank on for my future.

I’m going to pull the plug on the big questions this year.

I’m going to try and just be during 2020.

Truly confused,