What’s up? Or down?


David White quote

So it’s been about 3 months since my last confession…let me tell you my sins. Sorry, wrong post. Well while I haven’t been blogging, there has been quite a lot going down. Literally, I’ve moved south by about 1600KM. Back to my home town. In fact the moving process has dragged on for quite some time as we stopped in Sydney for 10days and I saw my Dr, had a Port-a-cath inserted in my chest…what larks! They couldn’t find a vein to cannulate me (never can find those veins) so had to go ‘Plan B’ which was to administer the local anaesthesia directly into my neck, which incidentally, hurts quite a bit until it doesn’t hurt at all. The surgeon joked that I was so unflinching maybe I didn’t need the anaesthesia at all – privately I thought yeah that’s not funny -don’t quit your day job, buddy. But maybe I wasn’t in a humourous state of mind.

The drive down went surprisingly well – I’m sure there were quirky on-the-road observations made, laughs had – after two years mostly housebound it felt good to be ‘going somewhere’. I’ve always liked driving, though with my health as it is I didn’t actually technically do any driving. But moving through the landscapes and seeing the horizon as you do when you’re out of a city felt good. The cat was a champion, barely a peep or complaint the whole time. It’s a bit of a sore spot for me right now as we just found out my fur buddy has bone cancer. He’s 17.5 so he’s had a good innings but I’ve come to really rely on his presence and affection in recent years particularly – he’s been around for more than half my life – we’re palliating him now but will have to say goodbye very soon and it’s just going to break my heart.


My Kitty-love

Coincidentally, the night before we found out about my cat I’d booked to go and see this poet do a public reading and talk in the city. His name’s David Whyte and he’s awesome and I didn’t know in the lead up to the night whether I’d be well enough to go – plans are never concrete when you’re a Spoony (see the spoon theory) – it shits us and it shits those around us but not much to be done for it.

spoony infographic

Thankfully I was able to go and I also drove the longest I’ve driven in probably 18months as I headed into the city. It was a really surreal drive because I used to work and play in the city for so many years, it seems almost every street corner is imbued with a memory or 10. I also found I had a subconscious sort of recollection of the layout of the roads and intersections so I basically went into autopilot as I’d driven those roads so many times before. I felt like a ghost coming back from the dead to a place I used to live, and could recognise but didn’t feel part of anymore. I can’t really describe it any better than that. It’s probably something the Japanese have a word for, they seem to have all the best words for indescribable things…

ghost therapy
So I saw this poet and he spoke specifically about these three delusions we all have about life:

1) that we can control it
2) that we can prevent ourselves from being exposed to vulnerability
3) that we can avoid heartbreak

So I’ve been reflecting on that last point and how David Whyte elaborated by saying essentially heartbreak is a given in life, it happens to all of us in one way or another, often multiple ways. The only way to avoid it is to not care, to not be deeply invested in life and then you’re effectively not living anyway. So heartbreak is part and parcel of existence and the beauty in it is it provides evidence that we feel, that we care and that we love. So I’m really heartbroken about my cat Oscar, but I know the beauty in it is that I can only feel this way because I care so much, because I’m losing something precious – a joyful connection, affection and memories of so many happy times. It means I’ve lived. Oh and here’s some nerdy breakdown of heartbreak, why feel when you can analyse the shit out of everything. Thanks internet.

I’m still not back to being funny – I can’t force it. I’ve said before that this illness is like being in an elevator and the basement is the worst of ill health, torture, preferring death – and the rooftop level is wellness and vitality and freedom. The higher up I go the more I feel I get my personality back – I get witty, cheeky, bored of my housebound routine, actively creative with drawing or writing, the desire to be social is very strong. Then when it drops I’m stripped back to a muted subsistence version of Zoe. Just getting through the day is my goal. I can feel terrified due to symptoms, shattered, apathetic, numb…sometimes the numbness is a protection from all the grief and anger that I can’t afford to wallow in because I don’t have the energy and if I let myself stay there I will drown and I am determined not to do that.

Feeling switch

I think I’m traumatised by my earlier hospital ER experience. I’m terrified of needing to go to ER now. I’m terrified of feeling so ridiculously unwell (which is the only context you would go to ER) and then in that moment of acutest vulnerability to be sneered at, judged, looked at with raised eyebrows and to have my sanity questioned…well THAT is the kind of experience that is going to hinder sanity if anything. I struggle to comprehend in 2016 that this is possible…that we’re still able to politicise illness to the extent that severely unwell patients are humiliated and ridiculed at their time of greatest need. I’ve thought it’s more than I can bare and I’m still feeling fragile, particularly now I have the Port in my chest – that’s definitely not going to go down well if I turn up at ER – but the fact is when you boil everything down and you go through something torturous like I have, you stretch…you begin to see that you can handle much more than you ever thought possible. I would never wish this on anyone because at some level it has broken me – I feel deeply betrayed by the medical system (not everyone, but the system that perpetuates a culture where it is ok to belittle me when I ask for medical help because supposedly my illness doesn’t exist here) and the trust I placed in it has been corroded.

not anxious

But I don’t want to die – I love life. This is the brick wall that stops me from giving up. When I have flashes of feeling better it reminds me why I’m fighting. I fucking love life, I love meeting people, socialising, travelling, learning, being spontaneous, being creative, being out in the world. At the moment a lot of that external stuff that I long for is out of my reach but I’m working my way back towards it. I got sick at 25, I’m now 30 (though apparently still look about 16) and I just can’t accept that this is how the story ends for me – a slow deterioration and an early demise. I don’t believe that’s how it’s meant to go and I certainly am trying my hardest to turn it around but it’s not easy. On any level. But I’ll keep trying, this IS my job now. Until I get my health back nothing else is all that important – my hands are tied and I can’t participate in life so I have to keep working at it. This is pretty much what I’d look like if I woke up well tomorrow. True story.

I’m not alone in this – sadly. There has been a senate inquiry into Lyme-like illness here in Australia and at last count there were over 1200 submissions, most of those from patients. The stories are heartbreaking (there’s that word again) and particularly the accounts of mistreatment and abuse from medical specialists just make my blood run cold. Some of them are public to read here. I’m really hoping something really concrete and positive comes from this inquiry. We so need something to hang our hope on – but the naysayers are vocal and entrenched in their views. I only hope there’s a massive shift in our favour and very soon. People are going bankrupt and dying, it has to stop. Best believe this little guy, he looks pretty convincing.

there is hope


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