On the night before the accident, John and I and our son Jay, who was then 26, lingered in the garden drinking wine and enjoying the mid-summer scent of jasmine and lilies. We talked about the Manet exhibition we had just seen at the National Gallery. We probably talked about how the end of the cold war might affect the chances of Bill Clinton winning the presidential election against George HW Bush in November. I know what John thought about that. I only wish I could recall his words.
The next morning, 30 July 1992, John got up before me as he always did. In the kitchen I found the contents of the dishwasher – knives, forks, spoons, plates, mugs – jumbled together on the table. This was odd because unloading the dishwasher was the one domestic ritual he willingly performed. It would be years before I learned the reason. At the time I put it down to absent-mindedness. It was a month since he had delivered a book to the publisher and he was already preoccupied by the next one, about art in the European Renaissance. Before I had time to be annoyed, I heard a crash from his study at the top of the house. I ran upstairs and found him lying on the floor next to his desk. He looked up at me with the radiant, witless smile of a baby. And he said: “Da walls.”
The ambulance took us to the local hospital where they said that my husband had had cerebral accident – a stroke. The cause was probably years of uncontrolled high blood pressure, about which no doctor had warned him. They said he needed rest and reassurance. Unfortunately, because of the so-called efficiency savings introduced by John Major’s government, there was a shortage of beds and of nurses in all London hospitals. I was so grateful when they found a bed for him in a geriatric ward later in the day that I didn’t at first notice how filthy it was and how hot. The floor was covered in urine, blood and dust balls. (Later I brought in a mop to clean around John’s bed.) The plateglass window could not be opened: to prevent suicides, a passing nurse told me.
It was a week before I managed to track down the doctor whose name was printed on a grimy card at the head of John’s bed. The doctor informed me that my husband’s case was hopeless. He would never walk again and must never be allowed to try to stand because the hospital insurance wouldn’t cover a fall. Physiotherapy, which the doctor considered “about as useful as peanut butter”, was out of the question.
You learn fast in an emergency. John had had an ischaemic stroke, which is a blockage in one of the arteries that carries blood to the brain, resulting in the death of brain tissue. It was in his left brain, which controls the right limbs and, in most people, the processing of language. About 75% of people will survive a first stroke. But it is essential to get them up and standing as soon as possible, and paralysed limbs should be moved to prevent the muscles from seizing up permanently. Visiting family and friends were happy to help, moving John’s arms and legs while they sat with him.
John greeted everyone with those two meaningless syllables, da walls. He also used the same sounds to ask them questions about themselves: “Walls? Da walls?” He chatted away in his usual sociable manner with his fellow patients, and even charmed the few overworked nurses. The rise and fall, the rhythms and pitch of his voice were so normal that those of us who knew him well understood at least the gist of what he was not saying.
Since he could read, we assumed he could also write; he was after all a writer. We gave him a piece of paper and a ballpoint pen, which he seized in his good left hand, and, on the top left corner of the page he wrote the letter “f” and then gave up. John had what is called expressive aphasia. Although he could tell that we didn’t understand him, it felt to him as though he was translating his thoughts as effectively and comprehensibly as ever into words. I was only one of the many people who had a recurring dream that John had suddenly started to talk normally. As one friend said, it was as if he were under a magic spell and, like all magic spells, it would be lifted as suddenly as it came on.
The neurologists and clinicians who specialise in stroke talk a lot about pathways. There are the pathways of neurons and synapses that are interrupted by a clot or haemorrhage, pathways from the onset of symptoms to hospital. Although the consequences of a stroke do not necessarily get worse over time, the pathway to recovery is problematic, as I was to discover. My own pathway towards an understanding of what stroke is and does, and how it can be addressed, began in that unclean geriatric ward where the doctor condemned his stroke patients to live diminished lives.
My concern at the time was to escape from that hospital to a place that would help my husband. The Wolfson neurorehabilitation centre at Atkinson Morley hospital in Wimbledon, which had an excellent reputation for stroke rehabilitation, did not admit patients over 65 on the NHS. They would, however, accept John privately – at a price that would have meant selling our house. With some difficulty, I found a bed in a hospital at the other end of London. It was at least clean. And although there was no physiotherapy available, the nurses, immediately on John’s arrival, got him up on his feet and limping, with their support, up and down the ward. All too soon they informed me that they would have to discharge him.
Then I found that John’s service in the second world war entitled him to a place in the Royal Star & Garter for Disabled Sailors, Soldiers and Airmen. A large and handsome building, overlooking the Thames from the brow of Richmond Hill, it had been purpose built for the care and rehabilitation of servicemen and women disabled in the first world war. (It has now, perhaps inevitably, been converted into luxury flats.) It was staffed by neurophysiotherapists, occupational therapists and a speech therapist. The physios worked on restoring not just movement of the affected limbs but movement that was as normal as possible. The physios walked him through parallel bars, guiding his bad leg into a correct position with their hands, running their hands up his spine to remind him to stand up straight. They got him to put his full weight on one leg while swinging the other. They made him do squats, holding his limp arm stretched forward with his good one.
When John came home at Easter after six months of intensive physiotherapy, he was able to dress himself and care for his personal needs. He was still limping but he was so much stronger that he walked around the house without a stick and climbed the stairs to his study. He was, however, liable to trip and fall because he had no control over his right foot. Then I heard, only by chance, that a rigid brace fitted on his foot underneath the shoe would solve that problem. Now he began to take himself on ever longer walks around the neighbourhood, chatting in those meaningless syllables with the neighbours, making new friends in the pub. We travelled, to Italy and farther afield.
Six months after the stroke, John’s vocabulary had not changed, and I was determined to find out how he might recover his use of language. The speech therapist at the Star & Garter had quickly given up on John: “You will never again have a conversation with your husband.” Her patronising pronouncement filled me with an energising rage that set me on a new pathway: to find out as much as I could about aphasia, and to prove her wrong about John’s case. My instinct as a journalist was to seek out expert specialists in the field; and I was not surprised to discover that the more experienced they were, the less likely they were to make predictions about John’s, or anyone else’s, chances of recovery. The people who know most about the way the brain works know that it is terra incognita.
I found two speech therapists, Jane Marshall and Eirian Jones. Watching them work with John taught me so much about language, and what the loss of it tells us about normal language, that I began to plan a book about the condition (which is better known as dysphasia, rather than aphasia, because it is rare that all the elements of language are lost). I will mention here only one of Jones’s many discoveries about John’s particular case because it explains the mystery of the way he unloaded the dishwasher on the morning of his stroke. Jones’s theory was that John had lost the ability to “disambiguate” the various different contents of the dishwasher. And in the same way he could no longer unravel the elements of a sentence. So although John could write individual words, matching the correct word to a picture or filling in the missing word in a story, he had, as Jones put it, no idea of what a sentence was.
On 13 September 1998, six years after the stroke, there was a stupendous breakthrough. John indicated to me that he wanted to write a thank you note to a friend who had given us lunch in his office. He got out one of his correspondence cards headed Professor Sir John Hale, and on it he wrote: “Dear David”. I said, Fine, now what is the expression of gratitude you need? John wrote: “Thanks you for lunch.” I said: Do you want to say where? John wrote: “in your office”. When? “On Thursday.” Then he wrote without prompting: “I have”. And I stupidly said, now you need either a verb or a noun. But he wrote “certainly” and laughed and finished the letter by himself: “been in luck! Yours ever, John.”
I telephoned Eirian with the news. She was pleased but reminded me that it wasn’t quite the breakthrough I had initially thought – I had, in fact, guided John.
I went to the US to research my book on dysphasia. Back home I told John about all the people I had interviewed, one of them being Alfonso Caramazza, a professor of cognitive neuroscience at Harvard. On 9 August 1999, I went out shopping. When I returned I found on John’s desk a scrap of paper on which he had written:
Dear Caramagne,
I will thanks you for agreeing to advice Sheila to carre on.
With best,
John Hale
Next to the draft was one of his correspondence cards on which he had written (note the style, one professor to another):
Dear Caramazza,
I will thank you for agreeing to advise Sheila to carry on.
With best,
John Hale
Nobody was with him. Nobody prompted or guided him or even suggested he write to Caramazza, about whom I hadn’t spoken for over a month.
I will never know how much more John would have written, because on the morning of 12 August he died peacefully in his sleep next to me in bed.
My book, The Man Who Lost His Language, was published in 2003. For the third edition in 2006, the publisher asked for a new chapter about any recent changes in stroke care. All my contacts led me straight to one man: Dr Tony Rudd, consultant stroke physician at St Thomas’ hospital in central London. Rudd was better known in medical and government circles as “Dr Stroke” for his tireless campaigning to get the message across that stroke, like heart attack, is both a medical emergency and a treatable illness.
I asked him what changes he had seen in the 14 years since John’s stroke. “There has been more progress with stroke than with any other illness,” he said. “But we started from nothing. And there are still black holes.” The failure to treat stroke properly from day one continued to be a massive waste of public money. Without treatment, the survivors will be a burden on the NHS and the welfare budget. It is not only they who will remain helpless and unproductive. Their carers, usually unpaid younger relatives, will also be unable to work.
But lassitude was giving way to excitement with the development of techniques which restore the flow of blood to the brain (known as reperfusion), in time to limit much of the damage caused by ischaemic stroke. Rudd had begun a programme of injecting suitable patients with a clot-busting drug. The technique, thrombolysis, is by no means suitable for every stroke. And because brain cells die in their millions during a stroke, treatment should be delivered as soon as possible, preferably within four hours. Thrombolysis was first used in the UK in the 1990s. Rudd’s hospital was the first that was equipped to deliver it to all suitable patients.
A cheerful young Scottish nurse told me that whereas stroke used to be “the dead end of nursing”, the opportunity to give quality care to people who might otherwise have died or been permanently disabled was so rewarding that she had decided to devote her career to caring for stroke patients.
I went away that day daring to hope that stroke treatment, which was underserved by an underfunded, over-bureaucratised health system, might receive the attention it deserved. In 2010, following recommendations by Lord Ara Darzi, eight specialised services for stroke treatment, known as Hyper Acute Stroke Units, were established across London. Six years later, St George’s hospital in Tooting, south London, was the first of them to perform thrombectomy, which mechanically removes clots too big to respond to clot-busting drugs. This continues to be the most effective procedure and allows almost half of those treated to return to their normal life within 90 days.
At 11:10am on Sunday 21 November 2021 I had a telephone call from my daughter-in-law Amanda. My son Jay, who was then 55, had fallen out of bed earlier that morning. Amanda knew it was a stroke because Jay had inherited his father’s high blood pressure, along with his insouciance about his health. She rang 999 only to be told that there would be no ambulance for four hours. A kind neighbour who is, as it happened, a doctor drove them through red lights to the nearest stroke unit. Amanda was informed that Jay was not a suitable candidate for reperfusion because the stroke had happened in his sleep and they couldn’t therefore determine whether too much time had elapsed for treatment to be effective. This was incorrect. Since Jay went to sleep at 11pm and reached the unit by 4:30am he was in good time. No doubt the hospital was overwhelmed by Covid. What happened afterwards, however, was less forgivable; nor, alas, is it an isolated case.
Jay was given a bed in a dedicated stroke ward. It was immaculately clean. (The lesson of the MRSA epidemics in dirty wards had been learned.) His was a right-brain stroke paralysing his left arm and leg and affecting his left field of vision, but sparing his language. The consultants who visited him in the ward predicted, presumably on the evidence of a brain scan, that he was unlikely to walk again. Although Jay was fully conscious and able to speak normally, the consultants also informed him that he would never work again. He must under no circumstances be permitted to stand up without the help of physiotherapists, who were scarce and clocked off at 4pm. The hospital insurance wouldn’t cover a fall and private physiotherapy was not permitted.
Without the support of his family and many friends Jay might well have given in to the despair that afflicts so many stroke survivors. He couldn’t believe what had happened to him. But he was also determined to prove that the doctors were mistaken.
Unlike his father all those years ago, Jay was allowed small doses of physio and occupational therapy every now and then. When they had time, the physios put him on a reclining static bicycle which he enjoyed because he had always been a keen cyclist, and which encouraged him to move the bad leg by pumping with the good one. After a few weeks, he charmed two of the physios into helping him to stand up and take a step, then two steps, then walk the length of the ward.
When Jay was discharged after four months in hospital he mostly used a wheelchair, although he was able to walk around the house with a four-legged stick. He had been warned by the hospital that he must never, ever rely on a single stick.
Amanda enrolled him in a private rehabilitation practice in west London run by a renowned physiotherapist named Richard Sealy. Sealy asked Jay what he wanted most to achieve, and when Jay said he wanted to walk without a stick Sealy said: “Well then do it.” Jay took a few steps. In 25 years of practice Sealey has treated 4,000 patients, including the journalist Andrew Marr after his stroke. Over the next 18 months, I watched this charming and dedicated man and his team of neurophysios and occupational therapists working with Jay to reconnect the pathways between the motor cortex of his right brain with his left leg and arm.
First, they got him to walk chest forward and head up – with, and then without, a stick. They tried to play football as a way of encouraging an instinct to kick. He tried to put weight and balance on his bad leg and kicking with the good one; or, and this was much harder, balance on the good leg and kick with the bad one. He did one-legged squats. He used a pilates reformer and walked on a treadmill. They timed him as he walked as fast as he could around the building, each time beating his previous record. In an attempt to wake up his left hand and arm they clasped the hand around his precious phone, hoping to trigger the instinctive grasp to stop it dropping. They tried video games played with his left hand.
By no means everybody could afford Sealy’s fees (£110 for 45 minutes). Sealy regrets leaving the NHS, where he was trained and which he says still provides the best training for physiotherapists in the world. If there is a shortage of neurotherapists in the NHS, he said, the reason they leave is less about pay than about the long hours of intensive therapy they are not allowed to provide.
I remain haunted by the people who miss out on precious rehab. Each one of 1.3 million stroke survivors in the UK has a story. Last year there were 111,137 stroke admissions to NHS hospitals, a rise of 28% in 10 years, and this figure is expected to rise dramatically. Meanwhile, 39% of stroke patients are abandoned by the NHS after six months. A third remain too disabled to work, many because they believed, or had no choice but to believe, the doctors who wrote off their chances of recovery. The population of stroke survivors is as big as that of a large city, and it’s getting bigger. More than half are left with a disability and about a third are unable to live independently.
Nor, as many young people like to imagine, is stroke a faraway illness that happens in the never-never land of old age. A quarter of people who experience strokes are under the age of 65. And in the past 10 years there has been a 55% increase in strokes among people, like my son Jay, in their 50s, which is the highest increase among any age group. The reasons may be bad diet – ultra processed food and especially sugary drinks, which are as dangerous as smoking – and uncontrolled blood pressure. The poorest members of society suffer strokes seven years earlier than the better off. Some are small strokes. They may recover spontaneously in a few weeks but even small strokes may be warnings of worse to come. Many will have lost the use of an arm and a leg, a field of vision, the production or comprehension of language. They might suffer from apraxia, an inability to sequence movements in the order it requires to perform everyday tasks. Some will find it difficult to recognise what they see, touch, hear or taste, an impairment of sensory processing known as agnosia. Visual agnosia was made famous by Oliver Sacks in his classic book The Man Who Mistook His Wife for a Hat. Others will suffer from anosognosia, a denial of their own symptoms. Every stroke is different and every brain has been conditioned by a unique set of experiences.
There is no humane sense in withholding the treatments that would allow them to return to independent lives. For those who need an economic justification, a 10-year study published in 2016 and led by Prof Lynne Turner-Stokes at King’s College hospital has demonstrated that intensive therapy for all neurological illnesses saves the cost of long term care and improves the rate of productivity. This is why the National Institute for Clinical Excellence (Nice) now recommends a minimum of three hours of intensive therapy at least five days a week. Yet at present, most NHS stroke units provide two or three hours of physiotherapy a week, with a six-month time-limit. Nick Ward, consultant neurologist at the National Hospital for Neurology and Neurosurgery in Queen Square, London, an ardent defender of rehabilitation after stroke, described this as “a homeopathic dose, not worth the cost”.
Why does the UK waste lives and taxpayers’ money by condemning stroke survivors to dependent, unproductive lives? Three and a half years after his stroke, my son is a living example of what can be achieved by physiotherapy, and why it is so important that more people have access to it. The hole in his brain is much bigger than it would have been if he had been treated on arrival at the stroke unit, instead of being told he was not eligible. Nevertheless, thanks to intensive neurophysiotherapy, Jay now climbs up and down two flights of stairs to their bedroom at the top of the house. He dresses and washes himself, walks around the house without a stick, around London with only a single stick, gets on and off buses and trains. He has returned to teaching mathematics, five days a week, at the school where he worked before the stroke. He swims at the local gym, where he has taught the personal trainer some of the techniques of neurophysiotherapy. Not only does he lead an independent and productive life, he is still, three and a half years post-stroke, getting better.
