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Turns out, needing a lung transplant really does change your life.

The diagnosis was a shock. I mean, I knew my breathing had been getting worse for years, but somehow I hadn't really understood it was at this level of extreme badness. I guess I thought the medical geniuses would find a solution that didn't involve anything quite so drastic, but, as it turns out, everything has its limits.

And so I now live a different life.

I mean, it is actually the same in so many ways. I still get out of bed, sit with an early cup of tea in the morning sun, cats at my side. I continue to potter around during the day, a thousand projects on the go at once, in varying stages of completion depending on how long they have been able to hold my attention. I still work in my studio, I yell at the bloody Waratahs, (How can I not? Seriously, this season is the pits.), I enjoy and fuss about my kids in equal measure, and spend stupid amounts of time checking my socials. These things are constants.


Same-same, but different.

I do most of the same things, in this post-you-need-a-lung-transplant life. I know I do them more gently. The deterioration of my lungs has been quite long and slow, over many years, and I have practiced adapting my pace to my function without any drastic learning moments.

But now, despite the patient, inexorable wending of the last few breathless years to this point, everything feels different.

It's a funny thing, but the physical challenges, which were always the actual bloody point before, are now relegated to the back seat, well-strapped in, behind the real driver of this particular off-road vehicle, which is me.


Physical changes are not even half the battle

Yeah, waiting for a transplant may be a fundamentally physical challenge, but the battle of the mind is truly where the action is.

Being chronically ill sucks. All the real-life things about it that you expect will suck, if you sit for a bit and think, they really do suck. Exhaustion, weakness, weird skin stuff, difficulty moving, or even getting out of bed. Constant blood tests and strength tests and weight tests and fitness tests. Yep, even lung transplant patients have to maintain their fitness!! And as for weight? Well, fatties don't get transplants, so the endless diet is a thing. Painful physio sessions of weight-lifting and bad 80's soundtracks. Getting a simple cold and spending a week in hospital. These things are real.

But for me, they are not the hardest part.


Living on the edge of panic. Endlessly.

That's the worst. Fearing the surgery, and then fearing not getting the surgery. Despairing of the breathlessness, but unable to rejoice in the solution. Understanding just enough to be absolutely terrified, but comprehending too much to find comfort.

And serious future panic, too. I hate the idea of the post-transplant restrictions, and then I have to consider the idea that I may never even get to that point. Where I can be enraged by the thought that I will not, NOT, be allowed to eat fresh prawns again, ever, and then realise that the only alternative to that is to die before that becomes an issue. To not get the transplant. Three or four more years of struggling for each breath, and then...done. No problems with food restrictions, sure, but nothing else either.

What if? What if? What if? What if? What if? Ad nauseum.

Was last Christmas my last Christmas?

The mind can be a wild and mysterious thing. Creative, imaginative, as vast as the Universe itself.

Also, a bit of a bastard to control.


Arguing with the dynamic

This sub-heading popped into my thoughts and I did a quick Google to see if I had read it somewhere before. I found this....

"Some have argued that the introduction of dynamic notions in semantics is superfluous and that whatever is treated by dynamic theories using their characteristic conceptual apparatus can be treated with equal descriptive adequacy ........"

Blah, blah, blah.

Arguing about dynamic meaning Martin Stokhof


Bloody hell. I don't even understand all that, and, if it were me, I definitely would have added more punctuation into such a long-winded sentence. Anyway, not what I meant.


I was merely trying to express that my mind, in this life as I am currently living it, is the hardest nut to crack.

That its constant, dynamic, explosive movement - back and forth, around and over, straight lines or knotted - its inability to sit serenely in any time or space, makes it exhausting to be around. Every thought is as slippery to catch as that breakfast trout flopping about in the bottom of the boat, the one I caught when I was seven years old.

I was thrilled, then grief-stricken, and then guilt-ridden.

I remember crying whilst I made my brother rub the air out of its bloated little tummy, and then flush its gills with fresh water until it could swim away on its own. I also remember David being completely and utterly bemused by the whole episode, and me thinking that Weet-Bix were pretty yummy after all.

And there it goes again, off on another weird little tangent. What was that about?


My mind can imagine the best, but also the worst.

It can plan a post-transplant travel bucket list, but it can also curl up in bed and weep.

How far will it go, and what will I allow?

That is my battle.









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