Diary

Sheila Hale

This sociable stranger with the donnish manner would like to know who you are and what interests you. He will listen attentively and respond enthusiastically. Whether you speak English, Italian, French or German you will have no doubt that he follows your meaning. The trouble is that however hard you try you will not be able to understand a single word he is saying. He is speaking some language – that’s obvious from the pitch and rhythm of his voice – but what language? Listen closely and you will hear that it is a language without words and with an extremely limited phonetic range, relying mostly on the syllables da and wals – dwals for short.

It is more than five years since my husband, a Renaissance historian, lost his language following a stroke. So far as I know, nobody in that time has taken him for an idiot or a wag. Everybody seems to be convinced that he is saying something. But brave though his confidence may be it is also one of the more worrying symptoms of a bizarre and poignant neurological disorder. John suffers from dysphasia – or aphasia as it is also called; and it is one of the many paradoxes of his condition that although he can hear perfectly, he cannot monitor what he is saying, or rather not saying. The buffer which in normal speech-processing checks the assembled components of language just as they are emerging as speech is missing from John’s brain. He is therefore unaware of the fact that he has lost access to his semantic memory and that when he tries to talk he is not using real words and syntax. His thoughts are so clear and well-ordered and ready for expression that he can neither believe that he is not getting them across nor stop himself trying. He throws himself into the conversation with such verve and conviction that people tend to blame themselves for his failure to communicate.

Dysphasia is a consequence of damage to the language centre of the brain, which in most people is situated towards the front of the left side, on the borders of a deep cleft called the Sylvian Fissure. The cause can be a stroke, a blow to the head, a tumour or a cyst. It is by no means rare. And it can happen to anyone at any age. The 150,000 or so dysphasics in Britain represent about the same proportion of the population as the victims of Parkinson’s disease or multiple sclerosis.

Unlike other neurological diseases that can affect language – Alzheimer’s, for example – pure dysphasia spares cognitive functions that are processed in other regions of the brain and that are not language-dependant. Like dyslexia (which is often one of its consequences), dysphasia can coexist with high intelligence. John’s memory, like that of most dysphasics, is unimpaired. He can play chess, hum a tune, plan a day or a journey, read or draw a map, find his way around a strange city. He can add and subtract but not multiply – because multiplication tables are learned verbally. He can write (in numbers not words) any historical date he ever knew or the price he thinks you should pay for your house. But he cannot write a cheque because he cannot write the words for numbers. He finds it difficult to remember phone numbers because, like most people, he would do this by repeating the numbers to himself verbally.

Many of our friends think of John’s disability as a spell that will be lifted as mysteriously and suddenly as it arrived. We still get letters from strangers who have read his books or remember seeing him on television and wish to recount a dream in which he suddenly begins to speak normally; the dreamer is either the only person who can understand this, or the only one who notices it, because everybody else is so absorbed by what he has to say. I often have both versions of this dream myself.

Having accepted that John can’t speak words, many people find it difficult to believe that he cannot easily write them. They are certain he would be able to communicate via a computer, as Stephen Hawking does, and refuse to accept that there is an invisible difference between John and Hawking, which is that Hawking, physically disabled though he is by neurological illness, has retained an intact language system. Why then doesn’t John use a dictionary? Because dictionaries are for looking up the meanings of words. John’s problem is that he can’t find the words for his meanings because the semantic dictionary in his head has been isolated by brain damage. Unfortunately there are doctors, neurologists and speech therapists who are equally resistant to counter-intuitive evidence about the effects of dysphasia. Faced with this inconceivable, and so far medically incurable, illness some specialists seem to rely as much on hunch and common sense as our well-meaning friends.

Several weeks after John lost his words a neurologist told me that he would never walk again. But he was quite certain that John would regain his language within a few weeks – ‘all highly intelligent, naturally verbal people do, especially if they are polylingual.’ The neurologist recommended a book by Valerie Eaton Griffith, a retired businesswoman who had devised a system of stimulating games and puzzles for the actress Patricia Neal after her stroke. They were all things that volunteers could do with dysphasic patients. A control trial, he added, had shown this method to be just as effective as professional speech and language therapy.

John can now walk three or four miles at a stretch. I tried Eaton Griffith’s method with the help of 40 friends, who took turns working with John eight hours a day, five days a week for nine months. It was good to feel that we were doing something to help him, and comforting for all of us to be together, but this experience mainly taught us that John’s illness was too complex or too mysterious to be cured by amateurs. We discovered, for instance, that although he could not sort pictures of fruits and vegetables into their correct categories he could, without the slightest difficulty, sort postcards of Old Master paintings into their correct schools or centuries. The first word he managed to write was ‘John’, the second, prompted by an unlabelled postcard, was ‘Vermeer’. (He has never progressed beyond single words, but still finds unusual, long or interesting words easier to get hold of than the everyday words that designate common household objects.)

A few days after his stroke John started reading again, but mostly newspapers and academic journals rather than books; and it was hard to tell how much he understood. If you wrote a very simple sentence – ‘Jack and Mary went to the supermarket on Wednesday to buy sausages’ – followed by such questions as, ‘Who went to the supermarket?’ ‘When did they go?’ ‘What did they buy?’, he was unable to answer by pointing to the appropriate words in the sentence. At the same time he flew through the American Scholastic Aptitude Tests, which evaluate reading ability with multiple-choice questions. On the basis of his scores he would have gained a scholarship to Harvard. We were given a fat cognitive neuropsychology textbook: a new subject to us. After ten days of skimming through the text John marked the subsection in which his illness was described. Strange though it may seem, that was the first time either of us had consciously seen or heard the word ‘dysphasia’ – which makes it likely that John found the passage by understanding its content.

Meanwhile he had been seen by several professional speech therapists. Some disappeared after a few sessions. One confessed that his case was too complicated for her; another insisted that I accept that he could not read, but only looked through the pages and turned them ‘out of habitual behaviour’. Five months after the neurologist’s optimistic pronouncement, a therapist in a white coat sat me down, offered a box of paper handkerchiefs and said: ‘You will never again have another conversation with John and you shouldn’t overtire him by trying.’ What she was doing is known as ‘counselling acceptance’, and her smug message and manner filled me with energising fury. In New York I consulted the head of speech and language therapy at Mount Sinai Hospital. He confirmed what I was already beginning to suspect, that nobody knows enough about dysphasia to be able to predict who won’t and who will recover and to what extent. Back in London, I found two speech and language therapists who were prepared, one after the other, to undertake the long task of taking John’s language system to bits in order to determine what exactly was missing and what might be regained. Both, in different styles, worked from guidelines derived from the way cognitive neuropsychologists believe the healthy brain processes information. As experienced clinicians they knew very well, however, that there is no such things as a typical dysphasic.

Unless there are other complications dysphasia don’t lose the whole of their language (which is why the word ‘dysphasia’ is preferable to ‘aphasia’). Some, like John, cannot talk or write but can understand and read. Others talk too fluently, sometimes using wrong or non-words, but can’t understand you. Some, again like John, can copy (but not generate) written passages while being unable to imitate the phonemes that make up spoken language. (How then does John manage to amuse us with perfect imitations of foreign accents?) Others cannot copy written words but can imitate, or cannot stop compulsively echoing, spoken language even if they cannot understand it. Some dysphasics lose only one part of speech – verbs, nouns, adjectives, adverbs, pronouns. Most have trouble with prepositions in the early stages of their illness. Some patterns are even stranger: there are patients who lose the words for objects commonly found indoors but not outdoors, for citrus fruits but not tropical fruits, and so on.

In the past ten years new scanning techniques have allowed scientists to watch the brain in action or to reconstruct the living brain in cross-section. The results seem to indicate, although it is too soon to be sure, that two brains damaged in exactly the same place can present two quite different sets of dysphasic symptoms. Each of us, it appears, processes language in our own way.

Scanning, again, cannot – yet – predict who will recover and to what extent, or which functions of language any individual might be able to relearn. Nevertheless it may soon make it possible to measure the extent of neurological damage accurately enough to permit the principle of triage to be applied to dysphasic patients. Therapy of any kind may be wasted on those who have lost more than the bare minimum of neurons necessary to remake connecting patterns in the brain.

Fortunately, research projects charting changes in the brains of dysphasic patients over time have shown an astonishing and unsuspected potential for recovery. I’ve seen, for example, the scans of a severely dysphasic woman in her forties who regained speech by transferring her language processing to her right brain. The only abnormality about her conversation was a tendency to speak slowly and to hesitate before replying. Her brain was sending signals over a great distance, to and from the semantic memory, which is fixed in on the left.

Scanning is the first major breakthrough since the language centre was discovered in the 1860s and 1870s, the pioneer explorer being the French doctor, Paul Broca, who in 1861 dissected the brain of a dysphasic patient and found lesions in the region now known as Broca’s. Since then there has been much discussion, and of course much controversy, about what language is, how it works and what its relationship is to the rest of human cognition. Scanning won’t necessarily disprove all educated theory, but it will refine and extend the exploration of inner space. When surgeons will be in a position to cure brain-damaged patients like John is of course another question.

Meanwhile a vast amount has been written about all aspects of dysphasia by cognitive psychologists, linguistic philosophers, psycholinguists, brain scientists, clinicians – most of it hard-going for the non-specialist, let alone for a person with impaired language. The most accessible brief account I’ve found is in Steven Pinker’s The language Instinct. The most moving story of a recovery is Douglas Ritchie’s Stroke: A Diary of a Recovery, published in 1960. But no populariser has done for dysphasia what Oliver Sacks has for other neurological disorders, doubtless because dysphasics rarely have enough language to convey the fascination of their disability.

Talking about Aphasia[*] is based on interviews with 50 dysphasics between the ages of 26 and 91. It is the first book to attempt to convey in the words of a large sample of dysphasics what it feels like to lose the power to communicate and how they have or have not learned to cope. The subjects have been selected to represent as wide a social, economic and ethnic range as possible. The group does not, however, represent the full spectrum of the disease. Those as severely afflicted as John are necessarily excluded. Doctors, charities and NHS fund managers like to point out that the value of therapy cannot be proved by randomised control trials, because each case is so individual and takes so long to diagnose. They would rather spend restricted funds on operations and drugs that give more certain results. To be effective, speech and language therapy requires time, and it is extremely labour-intensive. Three hours a week at £30 to £50 pounds an hour for three or more years will pay for a lot of bypass operations. Triage is probably the only answer. But until neurobiologists have the technical means to determine which dysphasics are curable, treatment will probably continue to be provided on the basis of luck, common sense or superstition.

Has therapy helped John? To answer that question I would have to write at length about everything we have both learned from it about the lacunae in his language-processing and their effect on his particular brain. I will mention just one example. The therapist who treated John for over two years devoted many months to teaching him the meaning and use of four words: who, what, where and when, which are among the most abstract concepts in language. They pose a question by leaving a suggestive syntactical hole. She showed us that although John understood most of what he read, he did not understand questions presented in this way.

Finally, after much struggle on his part and much patience and ingenuity on hers, he mastered them. And that was when he suddenly began to read not just for information but with evident purpose and pleasure. The books he has read since then occupy many shelves. They are mostly about late 18th and 19th-century British history and biography. This is the period he told me – a month before his stroke and just after delivering the manuscript of his last book, The Civilisation of Europe in the Renaissance – that he would like to explore in his next book, perhaps with a biography. He said it would be fun to write about one person rather than many, in a period for which there were too many documents rather than too few. In one of his desk drawers I’ve found a list, recently copied out in his clear, child-like hand, of book titles and page references. This discovery leads me to hope that John may be planning his next book.

[*] Talking about Aphasia: Living with Loss of Language after Stroke by Susie Parr, Sally Byng and Sue Gilpin, with Chris Ireland. Open University, 160 pp., £45 and £12.99, 14 October 1997, 0 335 19937 2.