CONTENTS

ABOUT THE BOOK

Brainstorm follows the stories of people whose medical diagnoses are so strange even their doctor struggles to know how to solve them. A man who sees cartoon characters running across the room; a teenager who one day arrives home with inexplicably torn clothes; a girl whose world turns all Alice in Wonderland; another who transforms into a ragdoll whenever she even thinks about moving.

The brain is the most complex structure in the universe, and neurologists must puzzle out life-changing diagnoses from the tiniest of clues – it’s the ultimate in medical detective work. In this riveting book, one of the UK’s leading neurologists takes you with her as she follows the trail of her patients’ symptoms: feelings of déjà vu lead us to a damaged hippocampus; spitting and fidgeting to the right temporal lobe; fear of movement to a brain tumour; a missed heartbeat to the limbic system.

It’s a journey that will open your eyes to the unfathomable intricacies of the brain, and the infinite variety of human capacity and experience.

ABOUT THE AUTHOR

Dr Suzanne O’Sullivan has been a consultant in neurology since 2004, first working at The Royal London Hospital and now as a consultant in clinical neurophysiology and neurology at The National Hospital for Neurology and Neurosurgery, and for a specialist unit based at the Epilepsy Society. She specialises in the investigation of complex epilepsy and also has an active interest in psychogenic disorders. Suzanne’s book about psychosomatic illness, It’s All in Your Head, won both the Wellcome Book Prize and the Royal Society of Biology Book Prize in 2016.

ALSO BY SUZANNE O’SULLIVAN

It’s All in Your Head

INTRODUCTION

There were three doctors working at the clinic with over fifty patients to be seen. I was the most junior doctor. John, the senior registrar, was in a room next to mine. He was a few years ahead of me in training. Experience counts for a great deal as a doctor so his knowledge was far greater than mine. The third doctor was the consultant for whom we both worked.

As usual there were far too many people to be seen in the time allotted. We all had to work more quickly than we were comfortable with. I was required to discuss any difficult problem with John or the consultant. It was a time in my career when I thought that a good doctor was one who worked quickly and wasn’t a nuisance to their senior colleagues. I avoided asking for help if at all possible.

The patients’ notes were piled high on a trolley outside the consultant’s room. They were visible to all the anxiously waiting people. Everybody turned to look as I took a set off the top of the pile and brought them into my office to read. They contained only a few pages. I was relieved. A thick file meant years of history to understand and a chronic problem that might not be solvable. So many neurological conditions are incurable and very challenging to treat. A thin file could indicate a minor issue that had disappeared since the patient was last seen. When I opened the notes, though, I sighed. The man had only been to the clinic once before and I was the doctor who had seen him that time too. The tests I had ordered then came back as normal which meant I hadn’t found the source of the problem. I would have preferred one of the other doctors to see him this time. Maybe they would notice what I had missed.

My letter recording our conversation said that he had odd sensations in his right arm. I had examined him and found nothing amiss. I had wondered if the problem might be a trapped nerve in his neck. I ordered electrical tests to examine the integrity of the nerves travelling into the arm. Those tests found that the nerves seemed to be working as they should. I knew that if the man was no better since that first meeting I wouldn’t really know what to do next. My only hope was that he had recovered without my help. I called him into the room.

‘How have you been?’ I asked.

‘The same,’ he told me, and my heart sank.

‘Okay. Well … can you explain the problem to me again?’

‘I get goosebumps running down my right forearm. Very noticeable goosebumps. That’s all of it.’

He made it sound so simple but the symptoms just didn’t speak to me.

‘Is there any numbness?’ I asked.

‘No.’

‘In between the goosebumps, does your arm feel otherwise normal?’

‘Mostly, except when the goosebumps arrive.’

He opened and closed his fist and stared at the offending arm. I was trying to feel my way through the problem. Trying to understand. I was not succeeding.

‘Is your hand or arm weak?’

‘No … maybe … no. When I have the goosebumps it feels weird enough that I think, if I was holding something, I would drop it.’

‘How often do you get the goosebumps?’

‘Only for a minute or two once a day. Maybe twice.’

The man was in his thirties. He looked well and had no medical problems in his past. I wondered why he was so worried about symptoms that only lasted one minute a day. What he described seemed almost trivial to me.

‘Well, the good news is that the tests are totally normal,’ I told him. ‘I don’t think you have anything to worry about.’

I was revving up my reassuring speech, hoping that he was one of the worried well. Maybe all he needed was to be told that everything was okay.

‘But what is it then?’

Oh no. His voice was anxious. A normal test result was not good news to him. He wanted a better explanation than I could give.

‘I’m not convinced that what you describe can be fully explained … but most symptoms that can’t be explained just disappear when left alone. I mean … goosebumps? Is it the temperature in your office … the air conditioning?’

I was clutching at straws and we both knew it.

‘I don’t think you understand,’ his voice was getting higher, ‘they are goosebumps that stand up like anthills on my skin. It isn’t normal … it’s … it’s … unnatural.’

I blush easily when I am uncomfortable and out of my depth. I felt the redness crawl up my neck towards my face. I felt goosebumps creeping over my own skin.

‘Let me look at your arms again,’ I suggested, buying myself some thinking time. I asked him to sit on the couch and take off his shirt. I looked at his muscles and they seemed normal. I tapped his reflexes with my tendon hammer and they were normal too. I poked at his arm with a blunt pin to check sensation. Normal. I tested his strength. It was possible his grip was not as strong in the right hand as the left but I had a sense that he wasn’t trying very hard. Perhaps he needed me to find something wrong.

‘I don’t think I can explain this,’ I said eventually.

Just for a second I thought I saw him roll his eyes. I took that as my cue that I needed help.

‘If you don’t mind waiting I need to go and discuss the problem with my consultant,’ I told him.

‘Thank you,’ he said, obviously relieved.

As I walked across the corridor towards my boss’s office I cringed. I didn’t want to interrupt him just to ask his advice about a man with occasional goosebumps.

I knocked lightly on the door and it swung open.

‘Aah, here’s trouble,’ John said as he beckoned me in, laughing. He had also come to the consultant to discuss a patient.

Our relationship was one in which he teased me about every small thing I missed, and reminded me of them as often as possible. I made sure to get my own back at every opportunity. We liked each other. Rivalry is a part of working in medicine. Mistakes, even understandable ones, tend to be remembered.

I closed the door behind me.

‘Can I get your advice on this man?’ I asked, indicating the notes in my hand.

‘How many more patients are out there?’ the consultant asked.

We had all been holed up in our rooms working as quickly as possible, but with no sense of how many people we had seen between us.

‘There’s quite a big pile of notes left on the trolley,’ I told him, ‘but can you please talk to this guy I’m seeing? I’m not sure what to do with him. He has goosebumps in his right arm, but that’s it. I thought maybe a radiculopathy. I sent him for nerve-conduction studies last time but the results were normal. Should I scan his neck, maybe? I’m not sure because it’s not clearly dermatomal. There’s nothing to find on exam.’

Dermatomes are one of the many anatomical patterns of the nervous system that neurologists use to trace a patient’s symptoms to a location in the network of nerves and spinal cord and brain. They refer to the areas of the skin known to receive their nerve supply from the spinal nerve roots. The skin of the arm is divided into seven dermatomes. If you have altered sensation in a single dermatome – a patch over your shoulder or hand, for example – then it implies a lesion in a specific spinal nerve root. I had not been able to make proper sense of my patient’s problem. The odd feelings in his arm did not fit into one neat dermatomal package, but it was as close as I could get. I had focused my investigations on the spinal nerve roots wondering if he had a trapped nerve in his neck. The tests told me I was wrong.

‘Did you talk to me about this man the last time he was here?’ the consultant asked.

‘Yes.’

At every clinic I saw as many patients as I could. I discussed the difficult cases with the consultant as soon as I had seen them so he had the chance to see them too. The people who were more straightforward we discussed when the clinic was over. Of course, this system meant that the consultant depended entirely on my judgement and on the quality of the information I gave him.

The consultant, John and I walked back to my clinic room. I thought I heard the other patients in the waiting room heave a collective sigh. They were still watching the pile of notes, waiting for their turn. When none of us picked up a new set they knew they were in for a further delay.

The consultant introduced himself to my patient. ‘So I’ve been hearing about these odd feelings in your arm. Can you explain it to me again, if you don’t mind?’

The man didn’t mind. He looked relieved to be seen by a more serious-looking doctor.

‘So I get this slow wave of goosebumps pass over my skin and then it’s gone.’

He ran his hand over his forearm to indicate which area was affected.

‘How long does it take for the wave to pass?’

‘I guess about a minute. Maybe less. It is an awful feeling. Really horrible.’

‘Does it feel the same every time?’

‘Yes.’

‘What does the arm feel like at other times?’

‘Not quite right. I can’t fully explain it.’

‘And everything else is okay? The other arm? The legs? No headaches or anything else I should know about?’

‘Nothing.’

The consultant took his ophthalmoscope and moved close to the patient to look at the back of his eyes. Then he tested the strength and sensation in the limbs.

‘Right hand maybe a bit less strong than the left?’ He looked over his shoulder at me as he spoke.

‘I wasn’t sure,’ I answered.

‘Does it happen day and night?’ the consultant asked the patient.

‘It can happen anywhere. I can wake in the middle of the night with it or I can get it walking down the street. Always exactly the same. Do you know what’s causing it?’

‘Not immediately but I think we need to organise some further tests. This doctor will arrange for you to have a scan of your brain and we’ll see if that provides some answers,’ the consultant nodded his head in my direction. Turning back to the patient he offered some reassuring words and promised we would be in touch very soon. As he left the room he said quietly so only I could hear, ‘Well young lady, it seems you were looking in the wrong place!’

A week later the magnetic resonance imaging (MRI) brain scan result was available. The temporal lobes are part of the brain that run front to back along the side of the head at the level of the ear. In this man’s left temporal lobe nestled a brain tumour. The tumour was too small to cause headaches. All it was doing was irritating the surrounding cortex, the grey matter that makes up the surface area of the brain. The cortex is electrically active. Through disrupting it the tumour was causing unwanted bursts of electrical activity. The result of these autonomous brainstorms were epileptic seizures. The only manifestation of these seizures was piloerection – goosebumps.

I had missed a brain tumour. I had done so by making two mistakes. Firstly, I hadn’t listened properly. Patients usually offer the diagnosis to their doctor in their story. Diagnosis relies on the doctor’s ability to appreciate the subtleties of what they are being told. When my patient described the odd feeling in his arm I thought he was telling me about a sensory disturbance – a problem primarily involving the nerve pathways that carry touch to the brain. But goosebumps are not strictly a sensory disturbance and are not carried by the sensory nervous system. They are an autonomic phenomenon. Part of our flight and fight response, they are one of the manifestations of fear and arousal. The autonomic nervous system is an entirely different confluence of nerves than those that detect pain or touch. Being a neurologist is being a detective. To find the cause of a neurological problem you must start by figuring out the pattern and then searching in the right anatomical region. You interpret clues and follow them. By misunderstanding the clues I had followed them to the wrong place.

My second mistake was to underestimate the breadth of brain disease. I had not scanned the brain because I forgot what a devious organ it can be and how heterogeneous the manifestations when it is diseased. There is a tendency to associate disorders of the brain only with the most obvious symptoms – paralysis, memory loss, headaches, dizziness, blackouts. But the brain plays a role in the function of every single organ in the body, every muscle movement (voluntary or involuntary), every tiny gland, every hair follicle. When things begin to go wrong in the brain it stands to reason that anything in the body can go wrong as a result. Not just the big things, the small things too. Brain disease may cause a flagrant symptom like paralysis or it may pick off one minuscule function. In my patient’s case the brain lesion was so small that it had stimulated the centre for autonomic control and nothing else. Thus goosebumps were the only symptom of a brain tumour.

As a doctor it is always terrible to get a diagnosis wrong. I take some consolation in reminding myself that when I was first studying medicine in the 1980s this man’s tumour would have been too small to be detectable by the technology we had then. Nor did goosebumps exist in the index of any neurology book I owned. For a very long time the practice of clinical neurology was limited by how difficult it was to investigate the brain. Diagnosis was educated speculation, with no way to gather the evidence that proved the neurologist’s detective work right or wrong. More than most people realise, despite major technological advances, this is still the case. The brain, the seat of what makes us human, is still vastly uncharted territory. And neurology remains one of the most complicated and beguiling of all medical disciplines.

Historically the brain has presented a bigger challenge to science than any other organ. The heart beats. The lungs inflate and deflate. But the brain comes with no superficial clues as to how it works. Encased in bone it is uniquely hard to get at. Even when that barrier has been passed there is nothing to indicate which part of the brain does what. Engaged in the most complex activity it remains inert to the naked eye.

Detailed pictures of the gross anatomy of the brain had been available since the eighteenth century. All based on post-mortem examinations, of course. Anatomists had divided the brain into brainstem, cerebellum and cerebrum. The cerebrum comprised four lobes: frontal, temporal, parietal and occipital. Scientists could only guess at the specific function of these structures. Or even if they had a specific function.

Noting that the hand and foot had each been carefully designed for their purpose scientists surmised that the brain was also shaped to fit. Inspection of the cerebrum revealed that the hills and valleys (gyri and sulci) of its surface had a very similar pattern in every person. Because the cerebrum was ‘soft’ and the cerebellum ‘hard’ they speculated that the former was responsible for sensation and the latter motor function; and that discrete brain areas might have a predetermined purpose. This was all guesswork. There was no way to verify it except to wait for people to suffer injury or illness and observe the results.

Many of the early vital discoveries in neurology are attributable to a single individual, sometimes a doctor and sometimes a patient. Of all the patients, Phineas Gage is the most famous. He took us on our earliest baby steps into the brain.

In 1848 Gage, a railway worker, was injured in an explosion. A tamping iron was blown through his skull destroying his left frontal lobe. The accident turned Gage from being a quiet man to one prone to aggression. It was the first clue to the role that the frontal lobes play in our lives. It was through Gage’s inadvertent frontal lobotomy that science first suspected the importance of the frontal lobe to personality.

For a very long time war wounds, suicide attempts, accidents and strokes were the only investigative tools of the neurologist. Doctors hovered over the injured and dying to learn. At first this was a very random method for accruing knowledge, but in time it became more organised with the development of the clinical– anatomical method, a systematic way to delineate the typical features of neurological diseases. Neurologists examined patients in life, followed them until death and then correlated the clinical picture with what was found at autopsy. By comparing lots of patients doctors learned to distinguish the clinical features of a spinal cord disorder from that of the brain. Or the pattern of limb weakness that occurs in a nerve disease from that of a muscle disease. Key clinical signposts emerged. Scraping the bottom of the foot and producing an upward movement of the big toe meant a brain or spinal cord disorder. Tapping the reflex points and finding the reflexes absent indicated a possible problem in the peripheral nerves.

The clinical–anatomical method was the beginning of the practice of neurology as we know it now. Through it neurologists learned how to recognise patterns of disease based on the careful search for clinical signs. It taught us how to correlate particular disabilities with anatomical locations in the brain. But a system that relied on accidents and post-mortems would never provide all the answers. A window was needed into the living brain. At the end of the nineteenth century that window appeared in an unexpected form. It was not an innovation or anything new, it was something ancient – the disease epilepsy.

Epilepsy was noted as a brain disease by Hippocrates in 400 BC. It took millennia for this to be fully accepted and longer still for the mechanism through which seizures develop to be understood. But once it was understood the unique brain lessons epilepsy could offer were quickly harnessed.

The story of how epilepsy became the most vital investigative tool for the brain began with the Italian scientist nicknamed ‘the frog’s dancing master’. In the eighteenth century Luis Galvani demonstrated that the biological cell has electrical properties. He electrically stimulated the legs of frogs and made their muscles twitch. This was the start of research into the electrical signals and patterns emitted by nerves, muscles and the brain.

A hundred years later neurologist John Hughlings Jackson was watching an experiment in which a colleague was stimulating the cortex (the outer layer of the brain) of a monkey. Hughlings Jackson was a doctor who subscribed to the method of learning through close observation. Something in the animal experiment struck a cord of recognition in him. It reminded him of an epileptic seizure. In his assessment of patients with seizures he had noticed that muscle jerking often spread systematically through the body, starting in one place and working its way to another. He saw a similar march of symptoms when he watched the animal experiments. Hughlings Jackson decided epilepsy was caused by a sudden disorderly expenditure of force spreading through the brain. He later expanded that view to say that the spreading force was an electrical discharge. He believed, correctly, that the discharge began in the cortex and spread through the connections between cells. The symptoms produced by the progression of that discharge evolved according to the function of the cells affected. This theory fitted well with the suspicion that different parts of the brain represent different parts of the body and that the arrangement of the brain is very similar in each of us.

Suddenly an epileptic seizure had become a symptom rather than a disease. The features of each seizure were representative of the part of the brain engulfed in the offending electrical discharge. If the discharge affected the area of the brain thought to control the right side of the face, then it caused twitching there. If the discharge then spread to the region controlling the right hand it followed that the twitching spread to involve that hand. Thus, watching a patient have a seizure was like taking an anatomical tour through the brain.

This theory led to neurologists and neurosurgeons joining forces to correlate brain lesions with seizure symptoms. For example, if a patient had seizures that caused their arm to jerk and an operation demonstrated a tumour in his frontal lobe it seemed reasonable to surmise that the part of the brain where the tumour lay must have some importance to the motor control of the arm. Doctors were following seizures to their source and extrapolating the function of the brain from that. Through comparing patients it was possible to make rudimentary maps putting symptoms together with brain regions.

Of course this technique had similar limitations to the clinical–anatomical method. It depended on chance occurrence. Also if the surgeon opened the skull and didn’t immediately see the source of the problem they had no way of knowing where else in the brain to look for it. A way to search the normal brain was needed. Epilepsy also provided that. Seizures have a unique feature that make them particularly useful as a tool to probe the brain. They can be reproduced artificially using the technique of neurostimulation.

Since the end of the nineteenth century scientists had been electrically stimulating animal brains without apparent harm to the animal. The advent of anaesthetics and antibiotics meant that this technique could also be applied to humans. The brain itself has no sensory receptors and can be touched, cut into and stimulated without causing pain. With the use of local anaesthetics surgeons opened the skulls of conscious patients. They then electrically stimulated the cortex. Being fully conscious the patients could report what each cortical stimulation made them feel. In animal studies researchers could only observe the reaction in the animal, but a person could describe their experience. Some brain stimulations produced movement. Others caused sensory disturbances, hallucinations, the resurgence of memories or emotional upset.

Most of the patients who were operated on had epilepsy. By testing different areas of the brain the surgeon searched for the source of their seizures by trying to reproduce their symptoms. For example, if a person’s seizure began with the experience of a hallucinatory smell the surgeon stimulated different cortical regions until the patient reported the experience of that smell. If they succeeded it was assumed that the source of the seizure had been found. It was also assumed that that area must have some importance to the normal processing of smell. But scientists did not have to restrict the use of this technique to looking for pathology. They began to use it to methodically investigate the function of healthy brain tissue. By systematically stimulating different areas of cortex and recording the results, surgeons were able to get a much better understanding of how the cortex was arranged. New discoveries no longer needed to rely entirely upon random injury and disease. Neurostimulation allowed them to create more sophisticated functional maps of the brain.

Fast forward to my early training years. A century had passed and the vast majority of neurological diagnoses were still made on an entirely clinical basis. A major development had come in the 1970s, in the form of the CAT scan, which allowed us to look inside living organs for the first time. It brought with it an opportunity to confirm a clinical diagnosis at an earlier stage in some patients. It could detect tumours and strokes invisible to us before. But it had limitations; there were still many pathologies it could not see. The mysteries of the brain were still not even close to being unravelled. The neurologist’s powers of deduction, their ability to interpret their patients’ stories, were all. They drew on their knowledge of neuroanatomy and brain maps to make a diagnosis, and medical investigations were mostly supplementary.

I was already a junior doctor, training in neurology, when MRI scans were introduced to most hospitals in the mid-1990s. MRI showed the brain in astonishing detail and, unlike CAT scans, did not give a dose of radiation with every scan. This meant that they were safe to be used regularly in the same person. Even a child’s delicate, developing brain could be imaged without fear of consequences. MRI could be used to find pathology, but also to track the changes of the normal growing brain.

While CAT scans and MRI scans were significant medical advances, it is important to realise that both were only still pictures – photographs. They showed structural anatomy, but said nothing at all about brain function. Staring at an MRI scan told you no more about how the brain works than staring at computer circuitry tells you how a computer processes information. Awake, asleep, engaged in a complex mental activity, MRI pictures of the brain all look the same. It was not until the twenty-first century that new imaging techniques enabled the investigation of brain function as well as structure. But there is still no technology that can predict or explain intelligence, talent, compassion or humour. No scan can tell a doctor how their patient feels. The peripheral nervous system can be anatomically unpicked, identifying which nerve goes to which muscle or organ, but the tightly packed brain is not so easy to deconstruct. Technology is helpful but the clinical assessment still trumps any test results.

I qualified as a doctor in 1991 and as a specialist in neurology in 2004. The years I spent in training turned out to be a very exciting time in the field of neuroscience. As well as imaging technology becoming more precise and leading to a better understanding of how the different regions of the brain work together, there were also many pivotal discoveries in the field of genetics. These gave new insights into neurological disease and the normal workings of the nervous system. They also offered the opportunity to make some diagnoses with the use of a single blood test. But these advances have not improved the lot of those affected by brain disease as much as people might think. The development of new treatments has not kept pace with our advances in knowledge. We still don’t know what causes the majority of brain diseases, nor have we figured out how to reverse them. There are still far more unknowns than knowns where the brain is concerned. How is personality determined? How is information processed? It is very hard to interpret and mend brain disease when we are still trying to understand its basic biology.

*

I do not ever remember doubting that neurology was the specialty for me. The nervous system is beautiful. It is intricate. Tiny nerves run up and down the limbs and through the spinal cord, all ultimately communicating with the brain through billions of long threadlike axons. Nerves coalesce in some places and separate in others, all by careful design. Each carries their own specific message and travels their own predetermined route. The complexity of it all allows us to function in a highly sophisticated way. When things go wrong that same complexity means neurological diseases often feel as if they have an almost infinite way of manifesting their symptoms. A centimetre to the right or left, the same tiny tumour in the spinal cord or brainstem or brain will produce an entirely different picture.

Medical students often find neurology very intimidating. Walk into an exam and encounter a patient who is losing weight, has wasted muscles in their hand and a drooping eyelid and the average medical student will baulk. To a junior neurology doctor, already becoming versed in how the puzzle pieces of the nervous system are arranged, the exact same problem is an easy one. They know that in the region of the shoulder, at the apex of the lung, there is a bundle of nerves. Included amongst them are some that go into the arm and one that ultimately travels to the eye. Cancer growing in that uppermost part of the lung can invade the nerve bundle, causing weakness in the hand and eyelid. The challenge of tracking these sorts of signs and symptoms is exactly what draws many neurologists to the specialty. As a medical student I found this process as daunting as anyone else, but I was also sufficiently intrigued to want to know how it was done.

I now work as a consultant neurologist in the field of epilepsy. The twenty-first century has brought many new tools that allow me to interrogate the function of my patients’ brains – but the art of neurology remains the same. I still do exactly what the pioneers did – extrapolate from a patient’s account of their symptoms to a diagnosis. I draw from their description of their experience to a location in the brain. I interpret stories. The maps of my predecessors and modern technology have made that process much more accurate, but many patients’ problems still defy the knowledge available. We are always learning. The symptoms of brain disease are open to such endless possibilities that the search for answers is not nearly over. The scope and effects of brain disease are as great as the scope of the healthy brain.

Neurological diagnosis is solving a puzzle, but when you rarely have all the pieces. You are given ten pieces of a hundred-piece jigsaw and are asked to predict the final picture from just those. Even today, nobody knows what a completed map of the brain will look like, so many puzzles are impossible to fully solve.

Goosebumps are far from the most challenging clinical case I have faced. They were just the beginning. In this book I will share the strange stories of some of the other people who have tested my knowledge, often to its limits: a stressed school janitor who hallucinated a fairy-tale scene; a ballet dancer who couldn’t stop falling; an office worker who lost her trust in the person she loved; a girl who kept running away. Joan of Arc and Alice in Wonderland will feature, alongside some very brave people facing radical brain surgery to cure a disability that you probably wouldn’t even notice if you met them. I will show how medical advances coexist with, and still entirely depend upon, old-fashioned medicine. All of the people you will hear about have seizures, but no two will be the same. Epilepsy has provided some of history’s greatest insights into the brain. These people will show you how and why.

This is a book about the brain, epilepsy and humanity. It is about the incredible strength and ingenuity of people who have disabilities that are uniquely their own. Doctors have always learned from patients. It is my belief that the patients in Brainstorm have much to teach us all.

THE BRAIN

1

WAHID

I went to the waiting room and called Wahid’s name. In one corner there was a bustle of activity. Lids being put on coffee cups. Coats and bags being gathered. I held the door open and waited. A couple started towards me. They didn’t make it very far before the man turned back towards his chair and ran to claim some forgotten gloves. The woman waited for him. In the background the receptionist smiled over at me.

‘I caught you by surprise by calling you on time!’ I said when the couple finally made it into the room. My attempt at humour didn’t dent their troubled expressions.

‘Is it okay if I come in with him? I’m his wife,’ the woman said.

‘Of course,’ I said. ‘I’m Dr O’Sullivan, by the way.’

There was a further brief dance with bags and chairs before we all sat down. Wahid’s slim notes sat on the table between us. They contained only one letter. All it said was, Please see this man who has been woken by strange attacks at night since he was twelve years old. I looked at the man sitting across from me. Outwardly he was the picture of health. Young, tall, well built, neatly dressed. I looked at his date of birth. Twenty-five. Whatever was bothering him had been doing so for a very long time but hadn’t outwardly touched him.

‘So, Wahid, your doctor tells me that some sort of odd attacks are waking you at night,’ I said opening the notes on a blank page, ready to record everything that was said. ‘But perhaps before we get to that you could confirm for me how old you are and if you are right- or left-handed.’

Every question matters. Patients are strangers. At the start I am as interested in how they answer as I am in the answer itself.

‘He’s twenty-five and he’s right-handed,’ Wahid’s wife said.

‘Are you working? Studying?’ I asked.

There was a brief whispered exchange in a language I couldn’t place.

‘Shh,’ his wife said and then turned back to me. ‘He’s in college.’

‘What do you study?’

Another rumble of half-whispers prompted me to interrupt, ‘Do you speak English?’

The referral letter did not say otherwise, but it seemed necessary to check.

‘He speaks perfect English … he just doesn’t want to be here,’ she said and raised a quietening hand to her husband who looked ready to voice some objection.

‘I see you’ve had this problem since you were a child. What prompted you to come here now after all this time?’

I had been wondering this since I read the referral letter. I directed the question pointedly at Wahid, trying to force him to answer for himself.

‘Me,’ his wife said wearily, ‘I made him come.’

‘If it helps at all, I won’t make you do anything you don’t want to,’ I assured him. In neurology more than any other specialty there are so few absolutes. Most consultations are a collaboration. Some are a negotiation. ‘Let’s go through the story and see what’s needed – if anything. So … this thing …’ I hesitated to know how to refer to these mysterious as yet unchronicled events. ‘This thing that happens at night – do you remember the very first time it happened?’

When a patient goes to see their doctor they often describe their symptoms as they are on the day of the visit. Or the day before. Or the worst day. Their pain at its peak. A doctor needs to know these details, but like any other story the ending may be misleading if you don’t know what led the person there. The first symptom is the first puzzle piece.

‘Actually I do remember how it started.’

Wahid had spoken at last. His accent was different to his wife’s. Hers was East London. He told me that the problem had begun when he and his family lived in Somalia, where he was born.

‘I was twelve …’ Wahid started.

It was night-time. Wahid was asleep in the room he shared with his two younger brothers. His parents were asleep in the room next door. Suddenly Wahid found himself awake, sitting up in bed with his brothers staring at him. Before Wahid could work out what was going on his parents came running into the room. The younger boys had apparently called out and woken them. Wahid had been vaguely aware of a lot of noise and fuss but couldn’t quite make sense of it.

‘What’s the problem?’ Wahid’s father asked the boys after he had turned on the light in their room.

Wahid’s brothers didn’t seem to be able to say what had upset them. They just babbled incoherently. Wahid had apparently woken them, but neither of the two other boys was old enough to explain clearly what he had done. Wahid was no help either. He found it all very confusing. He knew something odd had happened but couldn’t explain it so he chose to tell his parents that he had no idea why his brothers had called out.

‘Do you know if you were making sense when your parents came into the room?’ I asked.

‘I was fine. That was the thing. I thought they were all going crazy.’

Finding each of their sons apparently well, the parents just remonstrated with them for waking the household and told them all to go back to sleep.

Thirty minutes later identical shouts brought the parents running again, with very similar results. This time the brothers reported that Wahid had looked as if he was scared and had kept pointing at something in the corner of the room. They thought he had seen something there, but they didn’t know what. Wahid denied it. His father gave a cursory look around the room to try and understand what was frightening the children. Ultimately the boys got another telling off and a threat of punishment if they didn’t go straight back to sleep. The rest of the night passed peacefully.

The next morning, with everybody in a hurry to get ready for school or work, nothing further was said about the incident. In fact the whole episode was completely forgotten until exactly two weeks later when it happened again. It was the same as the first time. The boys had been in bed for an hour. The parents were in the kitchen when the youngest boy came trotting in. He told them that Wahid had woken them up again. The brothers had heard him grunting and found him sitting up in bed pointing at the wall. When questioned Wahid continued to deny that anything unusual was going on. The parents didn’t know what to do so they told all three boys to stop getting out of bed at night and left it at that.

Over the next four months Wahid’s brothers intermittently complained that he kept grunting and pointing like a zombie at night-time. When his parents tried to interrogate Wahid about this he became upset.

‘I was always in trouble even though it was not my fault,’ Wahid told me.

Starting to become concerned, his mother took him to the doctor. He found Wahid healthy and suggested that he was suffering from nightmares. Advice was given about his diet and sleeping habits. Wahid’s mother made the adjustments suggested. They didn’t help. The problem just got worse and began to happen every week.

Eventually the parents decided to separate the boys at night. Wahid’s father was consigned to the children’s room and Wahid moved in to sleep with his mother. On the third night of sleeping together his mother was woken by a noise. The bed rocked gently. She turned to find her eldest son sitting upright with his head turned so that he was looking over his left shoulder. His left arm was outstretched and he was pointing with his index towards a spot on the wall. His mother thought he looked frightened. She looked at the wall and saw nothing. By the time she looked back at her son he was sitting in a relaxed position with quite a normal expression on his face. When she asked him if he had seen something in the room he said he didn’t think so.

‘So what were you pointing at?’ she had asked.

‘I don’t know,’ he replied.

‘Did you know you were doing it?’

‘I’m not sure,’ he said.

‘You must know what you were pointing at?’

‘No.’

Twice more that week Wahid’s mother was woken by her son. She decided to consult her doctor again. He still insisted that Wahid was having nightmares. When the family rejected that diagnosis the doctor suggested that Wahid was just looking for attention. The parents were frustrated. They changed Wahid’s diet again. They changed his mealtimes. They made him go to bed earlier and, when that didn’t work, later. They asked the school if he was struggling with his work but they hadn’t noticed any problem.

Feeling helpless, the parents decided to get the opinion of a traditional healer.

They gave the healer a detailed description of the events. Waking at night. Pointing and staring into the corner of the room and then denying doing so.

‘Which wall does he point to?’ the healer asked.

‘The north wall, I believe,’ the father said.

‘North to where Anwar’s house is?’

‘Indeed.’

The healer said he knew the source of the problem.

‘I have seen this one before!’ he told them. ‘I know this one!’

The opinion he offered made a certain sort of sense to the family. A spirit was haunting Wahid. It was deliberately waking him at night with the intent of disturbing the family. The healer guessed that Wahid was fixated by the visitor and when he saw him he was compelled to follow him avidly around the room. By pointing Wahid was trying to warn others about what he could see. That the spirit was visiting with increasing frequency meant that Wahid had a message that he had not yet delivered. Or had not yet understood.

‘What message?’ the parents asked.

‘He seems a very discontented spirit,’ the healer had said quite ominously. ‘I think it is Anwar himself. The grandfather.’

Wahid’s grandfather had died five years before. It was widely known that a family feud had erupted over the ownership of some of the grandfather’s land, with Wahid’s father and uncles fighting over their share. As the eldest, Wahid’s father had taken possession of the land. His brother thought it should have been divided equally amongst all the sons. The healer was certain that this conflict was the reason for the haunting. That Wahid’s accusing finger pointed in the general direction of the disputed land only served to strengthen his conviction. What’s more, Wahid was the eldest. Any land taken in bad faith by his father would ultimately pass to him. The healer’s interpretation fit neatly into the family’s fears and guilt. In that moment it proved easy for them to accept. The healer suggested that they give part of the land to the brother who had originally laid claim to it. If they did so, a wrong would be put right and the spirits would be appeased. Reluctant at first the family eventually did as they were advised. It didn’t work. Wahid got no better.

On learning of the failure of the treatment the healer brought in the local priest for his advice. They agreed that the grandfather must still be angry at the slight. More reparation was obviously required. They advised a further donation be made. This time a live goat was given to the church and another to the healer. Wahid’s condition remained unchanged.

Over two years things continued much like this. Wahid’s family followed the instructions of the healer and priest. They administered a variety of herbal remedies drawn from local plants. They prayed to the appointed gods. They sacrificed a chicken. They did each using the very specific techniques taught to them. It was all to no avail. Only when the family could not afford to pay for any further treatment and had no amends left to make did they give up and accept that Wahid would have to live with things as they were.

The attacks continued. Wahid and his brothers just learned to ignore them. By the time he was twenty-one Wahid was waking every night, three times per night. He came to accept this as part of his life. That it happened exclusively at night had the advantage that it made it very easy for the family to ignore. In the daytime he was quite well.

It was not clear where exactly this would have led had Wahid’s life not undergone a major change. Wahid had studied economics in Somalia and when he was twenty-three he was accepted on a master’s course at a college in London, where he went to live with an uncle whose own children had grown up and moved out.

The move to a new country required a big adjustment, but he coped. He discovered that he liked living in England – apart from the weather and being so far away from his family and friends. But he made new friends, at college and through his local community. The friend who would make the greatest difference to his life was Selma.

Selma had lived in London all her life. She worked as a hospital receptionist. Wahid and Selma met when his aunt invited Selma and her parents to dinner. Selma’s family came from the same area of Somalia as Wahid. The pair liked each other immediately. It was with the joy and approval of both families that they became engaged ten months later.

Until Wahid married and moved in with Selma he had spent every night in London sleeping alone in his cousin’s old bedroom. Nobody in his new home knew what happened at night. It was not so much a secret as of no importance to Wahid. So Selma didn’t know. She learned about the attacks on the first night the couple spent together.

Selma had not yet fallen fully asleep when she felt her new husband sit bolt upright in bed beside her. She felt him moving around but didn’t turn to look at him. Because it was their first night together she thought his sleep must have been disturbed by anxiety. Wahid didn’t bother to explain himself and she didn’t ask him to. It was only when the same thing happened the next night and the night after that Selma began to worry. She tried to ask Wahid what was wrong. He told her it was nothing. The more it happened the more Selma pressed him to discuss it. Wahid was very reluctant. Only when she persisted did he tell her the full story. When she learned what the traditional healer had said she took it badly. She told her new husband that he must be a fool if he actually believed in ghosts and spirits.

‘He took the story back when I said what I thought,’ she told me. ‘But he still wouldn’t see the doctor.’

In fact it was several months later that he finally agreed to discuss the problem with his GP. A few weeks after that, we met.

‘I’ve had this all my life. It’s fine,’ Wahid threw his hands in the air in frustration.

‘It sometimes happens four times a night,’ Selma said and then, turning to her husband, ‘and it’s not normal and I just want to know what it is.’

‘Are you aware that it’s happening, Wahid?’ I asked.

‘Yes. I know I’m doing it but I can’t stop it.’

‘What does it feel like?’ I asked.

‘I can’t breathe. Like my throat is closing over. My whole body is stiff.’

‘Do you know what’s going on around you? If your wife talks to you, can you hear her?’

‘I hear her. I wait for it to be over to answer.’

‘Is it frightening?’

‘Frightening?’ He thought for a moment, ‘Maybe. Most of all it is painful.’

‘Painful?’

‘Yes, my muscles, they hurt me.’

‘I have a video of it, if that will help,’ Selma said, taking her mobile phone out of her handbag.

‘Brilliant.’

Selma’s and Wahid’s descriptions had been so clear that I already had a very strong sense of these strange events. But a video was always welcome. Eyewitness accounts are very unreliable. Whether they are of car accidents or crimes or medical emergencies, accounts provided by onlookers are rife with error. Our brains are more sophisticated than any supercomputer, but they do not record events in a reliable and reproducible way like a computer. People imagine things that they didn’t see based on their expectations. They miss other things. When we focus on one object our brains very easily and sneakily filter out details on the periphery of our attention. When questioned about events after they have happened, even the style of questioning influences the answer.

Selma pressed play on her phone and passed it to me. The video started and I could see Wahid lying in bed. The room was brightly lit. He had the duvet pulled tightly around himself. Only the top of his head was visible.

‘It’s about to start, you’ll see him properly then,’ Selma said.