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Shona’s Treatment Update for Week #4:

I am Aeneas and this is my descent!

I’m a classics student. You’ve gotta let me be dramatic sometimes.

In the middle of the night I was thinking about myth, as you do, and I realised I can write my current experience as a katabasis – a descent into the underworld.

Odysseus descends to gain special knowledge from the seer Tiresias. Aeneas travels to the underworld – far off the edge of the known world, to hear a prophecy of Rome’s future. I can pick and choose elements of each of their experiences that resonate with me, but this has been at it’s core a difficult journey in pain. The landscape, the characters, the challenges and the results all add up to something very familiar. But it’s so hard to describe pain that the only way to do so becomes through these metaphors and symbols.

To start, it is a physical landscape far from home that is inhospitable to me in many ways; rough bumpy roads, steep and winding hills. The road out from my hotel and the one up to the hospital are known to be two of the worst surfaces in Prague – of course. This is before we even get to the cobblestones in the old town! It’s as if they’re specifically designed in shape and size to be as ridiculous for wheelchair wheels as possible!

I’m a long way from getting back to there at this point – our transport system to the clinic now is to lie flat in a private ambulance service, I can’t even handle upright in a normal shuttle anymore.

I have a special companion to guide me, one with special abilities and special knowledge as scientist and mother. Mum has been my Sibyl, who holds me as still as possible in the backseat of transport, keeps me motivated.

There are also monsters that block my way through – the most obvious one being pain. But also mobility. Loss of strength, control over my body. The beast tumour inside me has turned me into a weak version of myself that is frustrating, but also surreal. This doesn’t feel like the real me. We’re still in the worst couple of weeks, and I’m not despairing, I’m hopeful.

Trust in doctors is a leap of faith, faith in the guardians who protect the path forward through the underworld. They give me magic potions in the form of pain relief and sedatives to give me temporary heroic strength! At the centre, there’s an elevator down to the treatment level. My wheelchair is pushed through corridors only the initiated can enter (please sign this form accepting incidental radiation, thank you).

Then I enter the machine. Into the belly of the beast. I lay prone on a platform, and I’m left alone in the room. The entire building was built around this thing. Sometimes I wait sometime for the beam to make its way to me, as it’s used by others in the rooms next door to me. It’s a brief time where I contemplate the technology and what we’re capable of as humans.

Then I emerge changed in some way. Maybe I feel tingly, maybe just exhausted. Who knows what’s occurring inside. Back up the elevator, back in the transport and a van trip potentially as painful as the one in, back the way I came.

But I leave having learnt each day in some small or large way my capacity to bear pain. I’ve learnt to accept the unknown. I’ve had to give myself up to my future, it’s completely out of my hands. Who knows what changes each day inside me? Who knows how my body will react today?

But I still have my special helpers; the drivers who go so carefully around the long way to avoid bumps as much as they can. The ambulance people who get to witness my panic attacks if I’m claustrophobic of a pain crisis hits halfway there – the poor team who had to pullover and rearrange me while I got my breathing under control and relaxed again.

My return to the hotel room comes with special knowledge gained about myself, a little about the medical science relevant to me, and most importantly about the kindness of the people in the health industry and the lengths they’ll go to for me.

People ask me how I get through it. Well, you just do. You keep going, because what else are you going to do? But it’s the people around me who make all the difference. Things could be so much worse. Each small act of kindness is so significant.

We are all touched by tragedy and we all experience our own katabases, big and small. Emotionally, physically. We’re strongest with each other, and the heroes of the stories always have help. They can make their return. But they have to give themselves up to it. A symbolic battle is still a fight for survival, and it’s all relative.

The tiniest things we can do can make such a difference.