ROCK BOTTOM, round 2.

TRIGGER WARNING: discussions around suicidal ideation, grief, etc.

THANK YOU, everyone, for your beautiful messages yesterday and overnight. They brought lightness to my heart, and for that, I am so very thankful. So is Timbo.

To those of you who couldn't read the reel or it was too fast for you - here is what I shared in plain words:

Some of you know that things have been tough for me for the past two years.

Very few know how bad it’s been.

After some time to consider it all, I realised that if I am to continue to be 100% authentic as an advocate for rural people and equity in care, I also must be completely honest about my latest chapter.

I cannot mask the pain ‘behind closed doors’ or the reality of my situation anymore, and so, after all this time, I am ready to speak about it. I actually need to speak about it now.

Please know, as ever, that this post isn’t for sympathy or attention (insert all the usual disclaimers here). I simply recognise it's essential that those outside my immediate circle of trust understand the whole story, and, so many of you were so kind about asking ‘’how did your operation overseas go?’’ - and I’ve long owed many of you a proper response.

I haven’t responded before now because I’ve been in severe, protracted grief and could not find the words to convey everything. So, I have just kept sharing fun, silly, or happy things online and in life. You know the drill.

Where to start?

I guess let’s tackle the big one first:

It is surreal and heart-shattering to work tirelessly for years and years, finally being on track with life, finding my purpose, passion, and path—only to be knocked right back to rock bottom for reasons beyond my control. That’s the short of it.

The long of it is that since 2020, I’ve struggled desperately with a severe elevation of a condition called RLS, or ‘’restless leg syndrome’’ - a pretty bloody stupid and benign name (in my opinion) for a neurological condition that can have catastrophic impacts on sufferers' lives. Because in the worst of cases, like mine, it means you literally cannot sleep.

(If you're curious, Google ‘’primary severe restless leg syndrome’’.)

During my Australian of the Year time in 2022, my symptoms elevated to the extreme. I spent months on end curled up on the floor of hotel rooms while travelling, often awake until 3 and 4 am and sobbing and exhausted beyond endurance - then consuming vast amounts of coffee to get up and show up and deliver keynotes. It was a cruel, brutal, vicious cycle. Before the night of the Australian of the Year awards and the Marie Claire Advocate of the Year awards, I'd not slept a wink. And if that's not a testimony to the power of makeup and coffee, I don't know what is because I was barely standing.

The death of my Dad in early 2023 tipped me over the edge, and I wasn't even able to stand at that point. I remember driving an hour one day and realising it was too dangerous. I had to book into a hotel at 10 am. Sleep wasn't an option - so I sat in a bath and cried myself into a stupor.

And so I finally realised that the only option left, in the end, was by being (very reluctantly) medicated.

It was very obvious, very quickly, that the medication was horrific news for me (it is typically used for elderly Parkinson's patients), and I was left in a dreadful kind of zombie-like brain fog and the absolutely impossible position of either being wrecked by my medication or wrecked from relentless sleep deprivation.

After painstakingly researching the condition, alternatives, and options for months and months on end - I flew overseas (with my life savings) to Colorado for nerve decompression surgery - which I’d read a great deal about. It had yielded excellent results for some folks with severe RLS. I was told that the ‘worst that could happen’ was no result. I figured that was something I could live with and that it was a risk worth taking.

I was so, so wrong. And so misled. The surgery failed, and not only did the symptoms come roaring back - but I was now left with lymph damage in my lower legs.

Fast-forward 18 months later, and thanks to that surgery and subsequent damage, I remain in chronic daily pain and what I can only describe as not one but two invisible disabilities.

The lymph damage is a horror. It's like having a steel vice clamped around my leg, tightened in increments 24 hours a day. It feels like my leg is trapped in concrete, and the knock-on impacts travel into my knee and back, etc. Working hurts, walking hurts, shoes hurt, exercise hurts, and travel hurts.

You won’t know this by watching me unless it’s later in the day, and I haven't had the chance to elevate my legs. When that happens, it's the worst, and I walk like I am about eighty years of age. Other days, you'd bet your life I was making up a story.

As some of you know, Tim and I purchased a little farm 18 months ago—our lifelong dream that we have both worked so, so hard for. To have my capacity to exercise, work on, enjoy, hike, live, and immerse myself in farm life as I’d planned totally limited has been an incredibly devastating and crushing blow, which (as I am sure you can imagine if you know me) has left me at times in a terrible, terrible, dark despair.

When I was prescribed a new medication after the symptoms returned, I was so utterly defeated that I could barely lift my chin off my chest, and I didn’t do my usual exhaustive research and just took what I was told to take.

Weeks later, I recall one day Tim came home to find me curled on the floor, inconsolably sobbing yet again. I told him I could not live like this and that I could not fight anymore.

He talked me off a ledge then and a few times after. It was so very frightening to feel this way. Then, thank God, I thought to research the ‘’new’’ medication - and went on to discover survivor groups online from those who’d experienced heightened anxiety, depression, and suicidal ideation.

HOW this is not disclosed more urgently to patients beggars belief....

I also discovered from a Mayo Clinic research paper that severe restless leg syndrome ‘’compromises the quality of life of sufferers so badly that suicidal ideation is commonplace’’. (I guess there is a reason the worst of humanity has used sleep deprivation as the very worst kind of torture, eh?)

And so, here I was/am ... facing the double whammy of both a condition and dreadful medications working together to send me to the edge, along with my lost savings and debilitating, relentless, invisible, chronic pain.

Like SO many of you who’ve been smacked in between the eyeballs in cruel and unfair ways by life - I’ve done my level best to keep going and not to burden others with my grief and pain and to keep a good game face going.

In reality, I have isolated myself a lot, partly because surviving while running the charity was all I could do and partly because travel was excruciating.

That’s why I recently stepped back and took extended annual leave. I had to sit in the grief and try to come to terms with all of it. There is still work to be done, and I am not there yet. But I will say, this one is so much harder than recovery from addiction, psychologically, because of the absolutely desperate unfairness of it.

As my Dad used to say: ‘’Life isn’t fair, Grot. It just isn’t.’’

And it isn't fair.

But I also learned resilience and determination from my dad. And I knew I had to get back in the ring, again, whatever that looked like.

I am glad to be back 'at work' because I was without the passion and purpose of my work at SITC. Well, sheesh. I don’t even want to consider where that would put me.

I also knew it was finally time to share the unvarnished truth of my situation with you all, as anything else felt disingenuous, given my principles around authenticity and total truth, no matter what.

As I prepare for the ‘festive season’, I am trying to refocus on gratitude. At the top of that list comes Tim, whom I am speechless with admiration for. His patience, endurance, and capacity to be constant and faithful is mind-blowing. I must admit, some of the worst of my anger and grief over all this mess is that this good, kind, wonderful man has again been given such a heavy load to help me carry. And despite his grace, stoicism, provision, kindness, and patience - it honestly made me indescribably furious that he's had to go through horror again because of me. All while holding his own line, running his own business, and supporting many others, too.

The man is a saint. I cannot comprehend how he simply copes with so much. And I am grateful beyond measure for the extraordinary community of men in our district who he can sit with, and switch off with.

So, now, in terms of ‘what next’?

In January, I will head to Sydney to a lymphodema diagnostics clinic at Macquarie University to see the exact extent of the surgeon's damage and whether another operation can help me. I am clinging to hope like a life raft that there is a solution and that, God willing, a day will come when I can work, walk, and live with full function again—when I can take my dogs to the dam without pain.

I dream of the day I can drop the rock of resentment and sadness that has sat in my gut for almost two years, knowing that I flew across the globe and wasted my life savings to end up in a far, far worse position. The injustice of that has felt insurmountable, but I know I need to deal with and release it. And that is partly the purpose of this ‘’share’’ ... because, like my rock bottom round one ... I cannot heal or move forward by holding onto that resentment and pain - no matter how justified - or by hiding in the shadows and pretending all’s well when it isn’t.

So, this is me stepping out of the shadow of 2023 and 2024, owning this horrible situation, and being completely transparent about the hell it’s been.

While I have been seriously down (quite the understatement), I am not ‘’out’’ - and I will now focus on the year ahead with faith, clarity, and hope.

I am believing in a solution and a way forward. What that is, I don’t know. But I am speaking hope into the situation.

And, well, yeah ... that’s the general gist of my ‘’rock bottom round 2'’ story.

THANK you, if you are still here - and still reading, and I am sorry it’s such an immensely crappy story. As I've always been, I am also acutely aware that struggles and hardships are not unique to me and that many are in far worse positions. Believe me, I know that.

As we speak, I am 19 days into a thirty-day food fast. This is a massive challenge for those familiar with fasting, but I want to do everything I can to give my exhausted and depleted body (and soul) a reset and a good chance for success in 2025.

Currently, the medication/s I am taking (I am basically a human guinea pig at this stage) is allowing me to sleep, which feels like a miracle, and I pray that it continues to function effectively.

As I prepare for another year in the arena with these new limitations, scars, hurdles, and heartaches - I have a VERY significantly heightened, deepened appreciation and respect for rural and remote Australians and the brutal realities we face when hard times hit; whether that’s the enormity of crippling financial costs associated with travel to see specialists in the city or the simply heart-aching challenge of navigating hardship mostly alone and without humans around you to interact with or laugh with on the bad days.

I will channel this newfound hurt, grief, heartache and appreciation into my work, advocacy, and the relentless battle for healthcare equality for those who need it most.

I won’t give up, and I won’t stop doing what I love. I will find a way. And I will hold tight to faith and hope there will be a way through this to wholeness, somehow, somewhere.

I just wanted to share the truth of what’s been going on.

In the meantime, if (when) you see me wincing or walking like a bullock has kicked me... or sticking my leg up onto a table or a chair at a function like a bogan (which I am, in any case) to try find some relief .... or I can't join you in certain things .... well, you'll know why.

My sense of humour is still holding on, somehow, albeit a little darker at times. I richly treasure the good days, visits from friends, laughter, and adventures on the motorbikes, which is one activity that I am thankful to manage still.

And I cannot fathom how I'd be doing this alone on a wild, isolated (but very beautiful) mountain without my three beloved amigos to smother me with furry love and companionship.

I’d love a hug and a laugh when I see you next.

Much love,

Shan xx