My first awake craniotomy

Made me cry, quickly and quietly. I held her warm hand and I would not look away.

I saw a brain, inside a skull, inside a scalp, inside a person. I saw a left frontal lobe, to be precise. It was different than how I had imagined it – closer to the surface? Paler. It pulsed and it swelled, ebbed and flowed.

Iris had a brain tumor, she had cancer, she was dying. The surgery was to buy her time.

I came in with my supervisor to administer the neuropsych assessments. He had established a cognitive baseline that morning, so he could tell whether she was still operating at that level or if the surgery had caused impairments. At first, everything was promising – her linguistic comprehension was intact, semantic memory intact. Her motor skills were worrying, and it was difficult to tell whether she was understanding the directions given to her or if she was simply copying what my supervisor was doing. She began complaining that she was losing feeling in her right arm. The team conceded that to operate further would be to risk damage to the sensory cortex, changing Iris’s sensory experience. They stopped, they put down their tools; Iris will live a shorter life, but she will live it at her cognitive baseline, she will be intact.

The surgeon was disappointed. He had wanted to buy her more time.

I watched with wide eyes and open palms. I watched and I wanted to help but I knew the best place for me was out of the way, observing. I wanted to tell her how brave she was, that she was doing so well, that her skull would be put back together soon.

I figured I would be fine with surgery – I am not squeamish in the slightest, and blood does not bother me. But I have to say that watching the surgical procedure felt more visceral than I had anticipated. From a detached, clinical perspective, it was extremely interesting, and I continuously felt honoured that I was being allowed to watch everything going on. But there were moments. Moments when the piece of skull that had been removed was slotted back into place like a jigsaw and drilled into place, when the scalp was quickly and efficiently sewn back together, when the metal clamp was removed from her head, where it had been holding her tightly in place.

I became acutely aware of the distinction between brain and mind – the physical, biological brain, product of evolution, pulsating so close to the surface, pulsing and secreting and beating. And the mind; the conceptual, the experienced, the storyteller, product of environment and culture and thought and feel, a spectral manifestation of the brain’s hardware, a phenotypical representation of immovable physical parts, a conglomeration of countless experiences, thoughts, sensations, influences, patterns, conditions. So malleable. So vulnerable!

And it got me thinking – if one lives their life in one mind, if one extends the parameters of themselves up to the borders of their mind and lives their whole existence within those limits, if one remembers the same memories (although that’s a completely different story) and dreams the same dreams (I digress!!!) inside of one place… how fragile, how temporary, how desperately futile! We all tell ourselves that the cognitive and emotional landscape we know as ‘I’ is something secure, that it is, inherently, continuous, that it is an entity of itself, resistant to change – and is it that we must tell ourselves this, in order to make sense of experience at all? But it’s so fragile – smoke and sky and cloudscapes, bound invariably (if not initially obviously) and inevitably to the earth, the ground and the hills. A mountain falls – the sky rushes in. It cannot retain its shape.

It cannot retain its shape! The shape of the mind cannot be sustained through structural changes of the brain, and the surgeon decided that it was in Iris’s best interests to live a shorter life in the same mind than to live a longer life in a different one.

I think it’s the right decision – I was proud.

While I was thinking about all of this, I reached out to hold her hand, and I wept. She was back under at this point – the anesthetist was excellent, and I was sure that Iris felt no pain. I do not know if she was aware of me, I suspect not. But I felt that it was very important to me to feel what I was feeling, to honour my internal dialogue with a gesture in the outside world, and it felt right to hold her hand, and it felt right to weep for her. I do not know if any of the team noticed me to do this; they were all very kind to me, and in any case I think that they must all have already reached the same conclusions that I was now reaching, and that they understood.

I told the surgeon that what he had done was amazing, and thanked him for allowing me to witness. He was gracious, and said that I was welcome to observe in the future. I plan to take him up on that as often as I am able!

I imagine that everyone who has watched surgery for the first time holds similar experiences; jarring, abrupt and harrowing realisations pertaining to human frailty, of body and of mind. I think that you can read about these things, you can ponder them, you can talk about them, but that to see and smell and hear them in your present moment is quite another story – quite a different mode of storytelling, more implicitly understood.

I feel that Iris has changed me – I will remember her.

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