The Paradox of the Dying Mind

In the quiet, private hospital room, the family are gathered around a bed.

Throughout Daniel’s life, his father has been the strongest man he knew. Looking down at the man lying in the bed, he struggled to connect the thin frame and greying skin with the same man who’d lifted him onto his shoulders when he was a boy.

Working as a builder from age fifteen to the day he retired, Daniel’s father had spent a lifetime lifting heavy things, working with his hands, and keeping his body in top condition. There was the odd fry up here and there, sure, but otherwise Daniel’s father was the peak of physical health.

That was until the disease took hold. Once the diagnosis came, the decline began.

The disease was slow, taking away his father piece by piece. First his body began to wither, the muscles atrophying and the skin beginning to sag. And then, the most insidious part, his mind started to fail.

It would be small things at first, a forgotten word here or a misremembered memory there. But as the years past, and the disease took hold of his father’s mind, bigger and bigger memories would soon be erased. Happy family holidays spent in the sunshine were erased. First homes; first loves; all the memories that make us who we are began to slowly disappear.

Until finally, when the disease had taken full control, the names of his children would be relegated to that place just beyond reach.

In the hospital wards, with the smell of antiseptic lingering in the air, Daniel would steel himself for another heartbreak, for another lost memory, for another piece of his father being taken away.

The first time his father didn’t recognise him, Daniel felt nothing. He knew this day was coming, and it wasn’t something he could hold against his father. He sat down and tried to speak to him all the same, telling jokes, reminiscing about old times, and generally trying to show his father how much he was loved.

In the car outside, that’s when he broke down.

It had been three years since that day, and his memory hadn’t returned once. On each visit, his father didn’t know who he was, and he’d go through the whole process again. Do I know you? Yes, I’m your son. My son, that’s news to me. What’s your name. It’s Daniel, dad.

This visit, though… this visit was different.

He’d been at work when he missed a call from his sister; the screen, in fact, told him he’d missed five calls. He’d been in a meeting, with his phone on silent. He phoned her back.

“Daniel?” she said.

“Yeah?”

“It’s Dad, the nurse says he doesn’t have long.”

Daniel sped from the office and went straight to the hospital. As he got into the room, he found his sister and brother already there, standing by his father’s bed, looking down at him.

They’d all become accustomed to seeing their father like this, a shadow of the man he once was, lying in the bed, not knowing who they were. But the nurse was right, this time he looked different. More distant, if that was possible. His skin greyed, his eyes sunken further into his skull.

Emma, Daniel’s sister, tried to say something, but there was no response. Mark, their brother, had dragged in three chairs from somewhere; they all sat around the bed.

As their father lie there, they reminisced about times past, when their dad was happier and healthier. They laughed, they cried, they hugged, they enjoyed this time. As they chatted, their father’s breathing became slower and slower.

Each sibling in that room knew it was their father’s time. They watched the rising of his chest gradually slow, moving a little less with each breath.

But then… it started speeding up.

At first they didn’t notice, but inch by inch, their father began to sit himself up. And then, all at once, he started speaking.

“Hello everyone, what a lovely surprise!” their father said.

“Dad?” Daniel replied, shocked.

“Who else? How’s the job? And Emma, how are the kids? Mark, still keeping out of trouble, I hope?”

This was more than he’d said in years, more than they’d ever expect him to say again. And he knew who they were! The tears began to flow once more; happy tears. Their dad was back; he was making a recovery! This has to be a miracle.. what else could it be?

The four of them chatted away for hours, happy to have their dad back and, just as Daniel was wiping away the tears of laughter from his eyes, two nurses walked into the room.

“Look!” Emma said when she spotted them, “he’s feeling good again!”

The two nurses looked at the old man in the bed. They took in the smile on his face as he told another story to his sons. The nurses observed him for a few minutes, then looked at one another. A message passed between them, something unspoken that only they understood, one that Daniel couldn’t decipher.

They left the hospital that night in highest of spirits! Indeed, they were all feeling better than they’d felt in years, more optimistic than they felt possible. On the way to their cars, they continued chatting, making plans for the future. With Dad feeling better, at least for now, they could make some memories with their old man.

Daniel, back at home, made himself dinner then went to bed, the whole time full of happiness. The years of grey had been lifted, and his dad was back.

The next morning, the phone call woke him up before his alarm had the chance. It was a Saturday, so he was annoyed at the intrusion. He picked up and answered without looking who it was.

“Hello,” he said, his voice showing the signs of having just been pulled from the world of sleep.

“Mr Matthews?” the voice said.

“Speaking,”

“I’m Mrs Hyde,” the voice continued, “from the Memorial Hospital, where you father is being cared for.

“Go on,”

“Well, I’m sorry to say… he passed away in the early hours of this morning.”

She said something else, but Daniel wasn’t listening.

The joy, all those tears of joy were for nothing. The plans to make more memories were shattered.

His dad was gone, and the grey was back.

You could read the above and think that it’s either a) totally made up, or b) incredibly rare. The somewhat terrifying news it that it’s neither.

The above is a fictional retelling of a phenomenon that happens relatively often: a patient will seemingly make a complete and total recovery, hours, or sometimes minutes, before passing away.

This is called Terminal Lucidity, and it’s something I’ve been fascinated by for years.

Let’s explore it.

What Is Terminal Lucidity?

Terminal Lucidity is a term that was first coined in 2009 by biologist Michael Nahm and psychiatrist Bruce Greyson, and refers to the phenomenon of patients close to death temporarily returning to a state of mental clarity. This phenomenon is so closely related to death, in fact, that at times it’s been referred to as premortem clarity or lightening up before death^[1].

From the research conducted by Nahm in the 2009 paper, we know that terminal lucidity has been noted most commonly among patients with diseases and conditions that cause progressive cognitive impairment, such as Alzheimer’s disease – like the example we looked at at the start of this essay. However, it’s also been recorded happening with patients suffering from schizophrenia, tumours, strokes, meningitis, and Parkinson’s disease.

Because of the wide-ranging diseases this phenomenon is linked to, it’s incredibly hard to classify, and the result being that we know very little about how (and why) terminal lucidity happens. Yet despite us not knowing why this happens, what we do know is that it does. A survey conducted by Stephen Claxton-Oldfield and Alexie Dunnet of palliative care volunteers found that 33% of them personally witnessed at least one case of terminal lucidity in the previous year.

Much like the example in the introduction of this essay, it’s been reported that people with dementia, who have experienced either terminal or paradoxical lucidity, are able to suddenly recollect and recognise people they had previously lost the ability to identify.

What I find most interesting about terminal lucidity is that challenges, at a very fundamental level, what we know about the brain. Mainstream neuroscience holds that consciousness is produced by the brain, and with degenerative diseases, the brain becomes damaged. Our current understanding then theorises that once the brain is damaged, the Self is damaged too.

But is that really true?

A Potential to Reverse the Damage

If you’ve read my essay We All See It: The Neuroscience of Shared Visions, you’ll already know that I’m very interested in the power of psychedelic substances and what they can do to our brains. Well, it turns out that terminal and paradoxical lucidity, along with the power of substances like DMT, are beginning to change the way we think about degenerative diseases like Alzheimer’s and dementia.

As we’ve already covered, whilst we don’t know why exactly these bursts of lucidity occur, the leading theory is that the brain is able to spontaneously form new routes around damaged pathways, temporarily restoring connectivity and cognitive function.

In their paper, A perspective on Alzheimer’s disease: exploring the potential of terminal/paradoxical lucidity and psychedelics, Cong Lin, Xiubo Du, and Xiaohui Wang theorise that this is down to hypoxia. Hypoxia occurs when oxygen in the blood is insufficient at the tissue level to maintain adequate homeostasis, and their theory is that as the body shuts down, the decreased oxygen levels in the brain may actually cause neurons to become more active, strengthening weak connections and forming new circuits. Simply put, the dying brain briefly fights harder than it has before, resulting in strengthened, and sometimes even new, connections being made.

For years, we’ve seen Alzheimer’s, dementia, and other degenerative diseases as irreversible, but the phenomenon of terminal lucidity is beginning to change that viewpoint. And as part of the paper cited above, they trialled psychedelic substances like LSD and DMT, finding evidence to suggest they reduced amyloid-beta accumulation in the brain and improved cognitive impairment in Alzheimer’s models.

What Does this Mean for Identity?

With what we currently understand about neurology, combined with the best theories of how terminal – and paradoxical – lucidity occur, then it shouldn’t be possible for someone to temporarily gain cognition.

If we think of the Self, our very identity and who we are, as the software, and our brains as the hardware, it makes sense that the software shouldn’t run when the hardware is damaged. You wouldn’t expect to be able to use the apps on your phone if the phone itself was fundamentally damaged. And yet, the countless examples of recorded periods of lucidity in patients otherwise unresponsive are contradicting this.

The hardware is damaged, but yet it seems to – temporarily – repair itself just enough for the software to run as it should for a short period of time. This brings up a big question, and one that we don’t yet know how to answer: If the Self can return to a dementia patient for a short amount of time, where was the Self during the lost years?

There are two ways of looking at this, and they lead to very different places.

The first is the purely neurological explanation: the Self never went anywhere. It was always there, buried beneath the damage caused by any number of diseases. It remained inaccessible to the conscious Self, but intact, nonetheless. Essentially like a closed book; the words are still on the pages, you just can’t read them. Under this view, the neural bypass theory makes a kind of sense. The brain, in its final hours, finds a new way to open the book and read its contents.

This is a comforting idea, and it has some scientific grounding, as we’ve seen. But it raises its own uncomfortable question: if the Self was intact all along, trapped behind the damage, then what does that mean for the years of suffering? Were those patients aware, at least on some level, of what was happening to them? Was there someone home all along, unable to communicate?

The second interpretation is more radical, and harder to fit into the conventional scientific worldview: what if the Self isn’t produced by the brain at all, but rather received by it?

Under this view, the brain functions less like a generator and more like a radio, in that it doesn’t create the signal, it tunes into it. Damage the radio, and the signal becomes distorted or disappears entirely, but the signal itself remains.

This idea has existed in various forms for centuries, from the philosophical concept of the soul to more modern theories of consciousness being a fundamental property of the universe rather than a product of biology^[2]. It sits outside mainstream neuroscience, and it cannot currently be proven. But terminal lucidity is exactly the kind of phenomenon that makes the idea difficult to dismiss entirely. To go back to the software analogy: if the hardware is too damaged to run the software, and yet the software runs anyway, perhaps the software was never stored on the hardware to begin with.

Carl Jung, whose ideas we’ve already explored in the We All See It: The Neuroscience of Shared Visions essay, would have found neither of these interpretations satisfying on its own. His concept of the psychoid – the layer of reality underlying both mind and matter – suggests that the Self exists somewhere that isn’t purely physical and isn’t purely psychological. Not in the brain, not outside it, but in a domain we don’t yet have the language or the instruments to measure… or fully understand.

What terminal lucidity does, more than anything, is expose the limits of our current model. The assumption that consciousness is simply what the brain is is one of the most foundational beliefs in modern medicine. The problem with this way of thinking is that it fundamentally requires the Self to be destroyed when the brain is too. And yet, the cases of terminal and paradoxical lucidity show this isn’t always the case.

The accepted way of looking at the Self and the brain shapes how we treat dementia patients, how we think about death, and how we grieve the people we lose to these diseases. But yet, in the example of terminal lucidity, the person – their Self – comes back, if only for a short time.

Conclusion

For the families who witness their loved one displaying terminal lucidity, that return is everything. In the best case, it can provide a short amount of time with the person how they were before the disease took control. And yet, in the worst case, it can get their hopes up for a full recovery, making the pain of their loved one’s death that much more intense.

And outside of this, it poses some questions that push us beyond the limit of what we currently understand about the Self and about consciousness in general. For the scientists who study it, it’s a problem that doesn’t yet have a solution.

And for the rest of us, it asks a question worth sitting with: if the Self can survive the near-total destruction of the brain, even for a few hours, then perhaps we understand far less about who or what we are than we like to believe.

Terminal and paradoxical lucidity sit in the same place as sleep paralysis episodes, DMT episodes, and shared mythology that transcends continents, culture, and time periods. They show us that there’s something out there, something fundamental about ourselves, that we still don’t understand.

And, perhaps most importantly, it shows us that there’s still so much to learn.

Footnotes

^[1] It should be noted that there’s also the term paradoxical lucidity, which refers to a period of time where a patient will go through a surge of mental clarity, but the difference here is that paradoxical lucidity doesn’t occur before death.

^[2] If you’re interested in exploring this idea a little more, Panpsychism is a good place to start. This is a philosophical theory that argues that the mind, or consciousness, is a fundamental part of reality, suggesting that the consciousness we experience is present – at least in some form – in a wide range of natural bodies, not just human beings.