When illness attacks identity: how do we distinguish the pathology from the person?

It was impossible, really. This new question. I almost wanted my friend Anna to go back to asking about her mother’s surgery and radiotherapy – the sorts of things that as a neurologist, I could try my best to answer.

It had started with headaches. But then she started slurring her speech and seeing two of everything. And there it was, incontrovertible, on an MRI scan. A butterfly glioma, the doctors had called it – a tumour that spreads across the midline of the brain’s hemispheres, wing-like. It made it sound so gentle, so delicate, not malignant at all. It was around this time that Anna’s mother had started to tell the family that she loved them, that she had always loved them. Repeatedly, tearfully. She had never done this sort of thing before – if anything, she had been, if not unaffectionate, at least undemonstrative about her emotions during Anna’s childhood.

Anna’s new question to me was about this newfound warmth, this proclamation of love: was it her mother saying these things? Or was it just her disease?

I was thrown. Anna’s mother seemed to have become compassionate – her true self surfacing, empathic and warm. But there was another possibility: that this apparent empathy was constructed through sinister pathology. An inoperable tumour was crushing her frontal lobes, the brain region that influences personality and behaviour. Perhaps her affection had only been created by these physical changes.

If everything’s going great, why do we think it’s bad?

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‘Room Little Darker is not only about sex but love. But it’s no less dark for that’

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The Line Becomes a River by Francisco Cantu – suffocating in the borderlands

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Instead, I reassured Anna: it was her mother saying these things, I answered. Her expression of love was more than just a consequence of cancer; it was authentic.

This settled us both in a way.

But later I wondered if I had lied just to hear the answer we both wanted to believe.

If Anna’s mother had become hostile or resentful, would I have insisted instead that this was not her “real” mother – that this was just the cancer speaking?

Perhaps her mother’s declaration of love was nothing more than a declaration of disease.

In their tales lie the secrets of who we are when we're not quite ourselves. Because identity really is about sameness: the confluence of things that makes you, you, over time

My medical training had not prepared me for these sorts of questions around identity. A fundamental tenet of medical education instead lies in a weekly event called Grand Rounds – a medical drama of sorts that plays out in just about every hospital you can find. I’ve seen Grand Rounds as a medical student visiting Guyana, then at the hospitals I’ve worked at in Dublin and now in London, and each year in northeastern India and the port town in Mozambique where I teach neurology.

A junior doctor stands before an audience of senior consultants and her fellow trainees. She presents a patient’s medical history. The gowned patient is then walked or wheeled into the auditorium. The junior doctor demonstrates the examination findings to the audience – perhaps jaundiced skin or a curved spine, a dilated pupil or an enlarged lymph node.

The patient departs and now the other trainee doctors in the room are grilled – they offer diagnoses, tentatively recommend investigations, suggest treatments. The discussion is opened to the floor. Experts hold court, others listen and learn and remember for the next time. For doctors and most importantly for patients, the esoteric disorder might be stripped of all its mystery.

At Grand Rounds, the very heartbeat of medical learning, there is talk of shrunken livers and failed kidneys, transected spinal cords and severed arteries. But in the two decades since starting at medical school, I have never heard the word “identity” spoken there. We talk about loss of blood and loss of lung function but we do not contemplate the loss of person and loss of self.

To answer Anna’s question, to understand whether the brain tumour made her more or less herself, the same or different, I would have to search elsewhere.

*

And so I have sought answers in the stories I hear from the patients I meet each day: tube drivers and teachers, lawyers and cabbies. White witches with potions and prophecies, and restless criminals cuffed to silent prison guards. There are women in burqas, men in boubou and nuns in habits. There are elderly women who can only express pain in their own language (“beesh, beesh”). There are atheists and religious fundamentalists. And there are women and men newly landed here; they show me the ragged scars of their torture. Outside of their sartorial, ethnic, religious and forensic diversity, what they all share is their willingness to tell their stories. Of memories lost or limbs weakened. Of choking and shaking, of aching and staggering. Of partners who have supported them or deserted them, benefits provided or denied, death feared or welcomed.

In their tales lie the secrets of who we are when we’re not quite ourselves. Because identity really is about sameness: the confluence of things that makes you, you, over time. Look at that picture of you on your fifth birthday, party hat tilted and face paint smudged, nearby balloons waiting to be burst, candles to be extinguished, and temper tantrums still to be had. It’s you despite the passage of time – perhaps because now-you and then-you share memories or personality traits or physical features.

In Lost and Found, I write about what happens when that comfortable sameness is disrupted, whether through dementia, hysteria, multiple personality disorder, brain injury, hallucinogenic drugs like LSD, sleepwalking, and even the everyday moments we all share – cryptic dreams or false memories or forgetting words for a moment (“it was on the tip of my tongue!”).

There’s the story of Anita who gets lost on a hill walk of Howth around Balscadden Bay, which is how it begins for her – as the warped proteins of Alzheimer’s swirl through her brain, words and names ebb away. Her family see glimpses of the old Anita at times but wonder if she is still really in there. And then there’s Martin. He sings in the church choir, pitch-perfect, with a solid baritone. He is gentle and considerate and kind. But then his personality transforms so radically that his friends wonder if there was a sinister being lurking all along, finally liberated by the degenerative condition that atrophies his brain. Charlotte’s coma leaves her family grasping for familiarity as infusions run and ventilators hum and cardiac monitors beep. How do we distinguish the pathology from the person?

Seeking signatures of preserved identity, of connectedness and continuity, allows us to see what lies beneath

In the midst of all this, I look for hope because I truly believe there is plenty of that – neurological conditions that release profound creative talent, startling out of body experiences that eradicate bigotry, a man who awakens after spending 19 years in a coma, and another woken from a vegetative state by a sleeping pill.

*

In writing this book, I was forced to confront Anna’s question once again.

I hope I have found some answers through the stories of my patients. Seeking signatures of preserved identity, of connectedness and continuity, allows us to see what lies beneath. But that search for sameness is not always an easy road to follow. At times between the paving stones, weeds sprout, asphalt fractures, depressions form.

I believe that it’s a worthwhile journey, though; it means that, away from Grand Rounds, we can see beyond the fog of amnesia and the violence of sleep and the butterfly that casts its shadow on an MRI scan.

And for Anna's mother, for Anita, Martin, Charlotte and their families, who exist in a state where there only appears to be hurt, there might just lie overwhelming hope.
Jules Montague is the author of Lost and Found: Memory, Identity, and Who We Become When We're No Longer Ourselves, published tomororw by Sceptre, at £20. From Dublin, she works as a neurologist at a hospital in London