“I’ll just draw the curtains,”

I don’t know how or why this happens, but sometimes people find themselves opening up to me, sometimes people find their emotions bubbling very close to the surface and I appear as a likely vessel for the overspill. I don’t like it when people apologise for this – never, ever apologise for breaking and opening to me, I am always honoured.

There was a lady who was experiencing triple vision. It was scary and disorienting for her, she found it hard to recognise where things were in space and how to navigate herself. She was also experiencing hallucinations of dead relatives, come to speak to her, to guide her perhaps. I found her like this, we did some testing, and then she began to talk. She told me that she was afraid, she became quite tearful, she told me that she had never felt this way before and didn’t know how to deal with it.

As usual, I was laughably unqualified to deal with this situation, and yet deal with it I must! I don’t have the knowledge or the experience to dare to offer a genuine psych treatment plan, but I’ve found a few tools which seem to work in every situation.

  • Mindfulness. Being present in the moment, allowing yourself to breathe, take a second to take everything in, listen to your breath, listen to how your body feels – there, stay with me, okay?
  • Taking things one step at a time & having realistic goals. You don’t need to worry about what’s going to happen a month, a week, a day from now. We’re just going to get through these next few moments together, and I’m with you. One step. Don’t worry about how you’re going to get back to work, how you’re going to live at home – let’s just focus on the little things for now, such as learning how to make a tea again.
  • Being kind to yourself. If I had a car accident and broke my arm, you wouldn’t expect me to get right back to work, would you? You wouldn’t expect that I’d immediately be able to wash, dress and care for myself to the same standard as I did before the accident, right? So you shouldn’t expect that from yourself. Just because you can’t see your injury doesn’t mean it’s there. The brain is plastic until death, it can and will rewire itself, but you need to give it time – and celebrate the small victories. When you do learn to make that tea, congratulate yourself! Take a moment with that tea to remember what it felt like to not be able to make it, and how it feels now that you did it. Tell yourself that you’ve done a good job, be proud of yourself – I am proud of you.
  • Empathic reflection.
  • Active listening.
  • KINDNESS.
  • Being there. Not working, not rushing, not doing. Just being there, as a full person, with a full person. I am here, I am real, I am with you, I see you, I hear you. Right now, right here, you are not alone.

These things happen on hospital beds, behind hospital curtains, inside hospital wards. People break and remake themselves, lose and find themselves, over and over. It frustrates me that I never know what happens to these people after they leave the ward, but in some cases I think it’s better that way. It’s hard to be closed when someone breaks open to you, and I think that maybe I am most useful as a novel, singular experience – that maybe continuation of my presence would inhibit the candour we cultivate in those spaces? I dearly hope that to at least some of these people I was experienced as a relief, a break, a haven, a person they could really genuinely talk to and be with, if only for a short while.

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‘You’re going to have to repeat that’,

I tested a man who was blind in one eye and very deaf. I find it hard to test patients with sensory impairments to this extent, because it makes communication very stunted and awkward. I was basically shouting at him, and continually had to explain things in different ways or mime things to allow him to understand.

It’s frustrating because I didn’t want to treat him like a child – he was still there, it was just hard for me to get to him, and he to me.

He mentioned that he would often ‘work backwards’ to understand what was being said of him – if he missed some phonemes, he would retrospectively ‘fill them in’ afterwards, using the context of the rest of the words. I’ve come across the phonemic replacement effect before in cognitive psych, but I hadn’t come across it so clearly in a real world situation before.

It was startling at how much this man relied on ‘filling things in’ after the fact, and it got me thinking about how much of everyone’s perception is coloured by their perceived context. Everyone does this intuitively every day, but it isn’t an issue for most people, and mistakes are rarely made. Once your hearing begins to leave you however, it becomes much more important, crucial, to your understanding of the world.

It got me thinking about how deterioration of the senses plunges us unceremoniously into our inner worlds – perceptual biases, expectations, previous experiences have much more of an influence in our perception of the world. I was wondering as to whether the last roads of life are in fact vivid in their content – it’s just that the content is based on memories of the previous roads, rather than what is found in the present road.

I never want to patronise, I never want to coddle. I know there is still a full person in there, always – they’re just under the waves. Whereas the water used to be calm and clear, disruption of the senses creates waves, choppy and murky, and the light and the sound is filtered through the mess. My job is to be as clear and consistent as possible, so that my presence and intentions can be perceived as best as they are able.

“RNM”

Two very interesting things happened today~

In one instance, I observed my first electroencephalogram (EEG)! It was beautiful. I’d come across EEG often in my studies, and so I had some insight into the process and the readings. As is becoming a common occurance now, I had a moment of disbelief that what I was seeing was real – actual brain activity recorded right in front of me?! In a way that I could interpret? The technician was exceedingly competent and lovely, and talked me through what she was doing and answered my questions. I was enthralled with the reading, and we identified beta, alpha, a couple of theta waves. We watched as the patient became drowsy, we watched his motor cortex soften, and the beginnings of waves and structures forming out of the lines. We watched a sound from the corridor register, we watched the movement of his eyes. We began to whisper as we read that he was drifting off, and she waited until he stirred himself from his reverie before asking him to open his eyes.

In another instance, a man who has recently been physically & mentally abused and implanted with a thought transmission device inside of his ear is asked to leave his ward and have an MRI. He arrives to find two strangers insisting that he is having an EEG, and complies. He is told that one of the strangers is only there ‘to watch’. He, being a polite and personable fellow, informs the room of the implant – it was forced inside him against his will, and they now use it to transmit images and sounds into his head, and also to read his thoughts. He informs us of the doctor on his ward who is trying to convince everyone that he is crazy so as to continue the abuse. He tells us of his rape, and how he is meeting his mum for lunch today. He is cooperative as 36 electrodes are places on his head, and his brainwaves subsequently recorded. He drifts off.

I’ve been thinking a lot about how one endeavours to ‘do no harm’. I’ve come to understand that real and imagined harm are chemically identical. I’ve been wondering on what it is ‘to help’.

I just want so very badly for this man to have a nice day.

 

‘My wife will be home soon’,

Orientation questions are a quick and easily administerable tool for assessing a patient’s cognition.

I initially had qualms with this one of the questions is the day of the week – I know for sure that there are some days in which I would answer this question correctly, and it’s made harder for patients as life on the ward is devoid of weekly routines by which one could orient themselves to. The same goes for the date.

Usually people are oriented to the year, the month, the part of the day that they’re in. Sometimes they’re not.

One such man seemed to believe that I was seated in his living room on a January evening in 1997, while we were conversing from his hospital bed in a November morning of 2018. Things like this seem passively strange and even humorous when I read them in notes or see them on tests, but when I’m that situation it takes on an altogether harrowing tone. I know that people’s sense of what and when they are comes from a combination of autobiographial memory, proprioceptive narrative and sensory input. It appears that when the senses or the mechanisms by which we interpret them fail or fade, one is immersed and convinced by memory.

I wondered what I looked like to him – I wondered what my name badge or my clipboard appeared to be. I wonder what the view out of the window next to his bed looked like. I wondered what the curtains I pulled around us in the interests of an illusion of privacy were, and what I was doing with them.

At times I become frustrated with people who are very cognitively impaired – when I have a lot of people to see or things to do, and this person is taking an agonisingly long time to answer questions and complete tasks. But this frustration is swiftly and suddenly quelled by compassion, pity, empathic pain and shame. Who am I to pass judgement or emenate frustration to a person on the last roads of their life, speaking to me and cooperating with me in the only slow and stilted way they are able?

I am sure he could not percieve me as I was (of course I cannot be sure that anyone can perciev anyone as they really ‘are’, nor that what they ‘really are’ is an objective thing – I digress), and I am sure that he did not know what was happening or why I was there. But I am also sure that he was aware of me.

I can’t tell him that I’m sorry, I’m not even sure if I have reason or right to be. But I can be gentle, I can be patient, and I can be soft. I can make a conscious effort to speak softly and smile at him with my eyes, and I can take solace in the knowledge that whoever I was to this man, I was at the very least kind.

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.

Julian

I tested Julian today.

I knew nothing about him – no medical notes, no brief, just a name and profession; ‘doctor’,

Level 3 cognitive batteries contain a multitude of cognitive tests, including but not limited to word lists, digit spans, figure copy, immediate and delayed recall, language and fluency tests, visuospatial tests, a STROOP task, and three emotional tests. It took us 2.5 hours to get through all of it.

Two and a half hours is a long time, and I feel like I got to know Julian in this time. He didn’t tell me anything about himself, and he didn’t have to. I’ve been on a neuropsych placement at a hospital for a couple of months now, and in this time I’ve come to understand the cognitive battery testing to be a strange space – quite removed from everyday interaction, more intimate than acquaintances and more formal than friendship; a space where it’s appropriate to divulge the discrepancies between your brain and your mind to a person who is actively hoping to pick up on any such turmoil.

I haven’t administered many batteries yet; I believe today’s was my fourth. However I have administered countless single tests, such as the MoCA, ACE and OCS on numerous patients, in the ward and clinics alike. However despite my┬ámeager experience, I am coming to understand that the depth of interaction that can be achieved during a battery far surpasses that of a single test. With each test, each stumble, each nervous laugh, each small confusion and realisation and pause, I felt us settle deeper into a steady rapport with one another, and during those 2.5 hours I came to like him a lot. I feel that this was mutual; when he left, Julian told me that the experience of testing had been extremely beneficial and that he was glad he had done it, and he shook my hand and thanked me for my time.

I have encountered this a lot in my short time working as a neuropsychologist; people tend to be grateful and warm towards me, above and beyond what would be expected or even considered appropriate for a formal testing setting. I feel that this may be due to my title as ‘assistant’; I am shielded from any discontent felt towards ‘the system’, for the patients and I are all under an unspoken agreement that this is out of our collective hands, and furthermore, that I actually suffer as they do, and am ‘on their side’. I am finding and seeing that patients and assistants of clinicians are natural allies – I can do nothing to sway the decisions of my supervisor, however I can vehemently empathise and genuinely enjoy spending time I am not being paid for explaining and guiding frayed patients and family members through their medical pathways.

Julian struck me as warm. I knew he was a doctor – as soon as I met him in person, I wanted him to be my doctor. He was quick to laugh, and took enjoyment wherever he could – particularly in the WAIS block design, in which we concurred should be a game in it’s own right, and in utopia would be given to children. He complained of and demonstrated self-awareness of short term memory problems, despite far outperforming the majority of patients I’ve seen so far. He is clearly and intelligent man, but what made this so easy to perceive and receive was the way in which he reacted to less than perfect performance. He invariably performed well enough to reach the end of all subtests, meaning that he encountered the hardest questions. When he was stuck, for example in the final WAIS arithmetic questions, he did not waste time, he did not panic, he did not stall – but most significantly, he did not attribute his failure to answer the question in the time limit to an external source. He did not complain or question the test perimeters; he simply stated that he ‘couldn’t get that one’, in flat affect; neither skittish nor shamed nor grudging.

Julian stated that he found having the tests administered to him enlightening – during his time as a clinician he remembered administering a few MoCAs, and was intrigued as to how many tests there were, and how one chose which ones to administer to which patients. I explained as well as my limited knowledge, experience and time would allow; despite the fact that he is significantly older, more knowledgeable and successful than I am, he listened to my explanation with genuine interest and heeded what I said. I am unsure if this is entirely or partly due to Julian’s temperament, but it has made me wonder as to the power dynamics at play during testing. For the first time in my life, I am the professional with the clipboard behind the desk asking the questions, having all the answers, knowing when the press and when to be still, when to increase the pace and when to let the patent take their time. This experience is remarkable. Being a psychology student, you cannot help but to come across the classic social obedience to authority literature; Milgram, Zimbardo, Asch – and so I was already aware that such things as possessing a name badge, knowing where I was going and introducing myself as ‘neuropsychologist’ was going to elevate me in the eyes of my fellow humans, but the experience of this phenomena is much more subtle and evocative than I had expected. When I am in a work mindset and a patient asks me something, I feel that I am much more likely to know the answer than if the same question were to be asked to me on the bus home. When I am at work, I am expected to know things, and I expect myself to help people – and so I do. I automatically present myself and interact with people in this context, and they generally follow my lead, even in situations such as this, when they are vastly more experienced and knowledgeable than I.

This is particularly marked in situations that I am not familiar with – in this battery, there were a couple of subtests that I had never administered before, and have received no formal training for. Thus, I have not refined my ‘patter’ pertaining to those subtests, and was not as quick or as confident in their handling. However, in occasions like these, I have found that the patients either do not pick up on my hesitation or are unconcerned if they do – the context so heavily implies that I know what I’m doing, that it is actually quite difficult to appear as anything other than competent. I have also been mildly disturbed to notice that when administering subtests I am not familiar with, I am much more personable – more likely to use the time between tests to make conversation, to build rapport, to ask follow up questions, whereas in subtests that I now know off by heart, I reel off my established brief and that is that.

I have also become concerned and saddened at the rate in which I forget patients – I see so many, so many people in so many places, that it is hard to remember any one case. And yet patients do affect me, oftentimes profoundly – every day. I wanted to take this opportunity to speak from a place where Julian’s presence is still present in the forefront of my mind; a reflective state, perhaps, in which I am acutely aware of the complexity of the dynamics between tester and testee.

Julian’s a brilliant man, and I’d like him to be my doctor.