Speaking out after a stroke

If only it were like the microphone cutting out; one simple link failing between speaker and audience, everything else still working as it should. When somebody is deprived of speech by a stroke, being sure that only the power to speak has gone becomes as important as it is impossible. Loved ones want above all to believe that the person they knew is still there.

But instead of the answer they want, they are often left with questions that are beyond them, and beyond medical science, too. Sometimes those questions appear in awful flashes, moments when the damage suddenly appears to have cut some of the cords that anchor the competent mind. Sheila Hale had the utmost confidence that her husband, the art historian Sir John Hale, had not had his intellect subverted by the stroke which left him unable to speak.

One day she found a book on neuropsychology by his bed, and asked him where it had come from. His gestures showed that he did not grasp her question: her reaction was close to panic. Her confidence was not misplaced-though. He could understand the book, as far as his education permitted. But he could not understand simple questions.

One specialist told Sheila that medics aren't keen on strokes because they are "messy". The aftermath of a stroke is like that of a fire in an office, a brutal insult to orderly arrangements of information. Yet highly detailed information can be generated from the mess. Different patients have different "deficits": some make telegraphic utterances, others speak fluent nonsense; some can't understand words that they hear, but can say them, others can understand words they cannot say or write. By comparing deficits, psychologists can piece together the machinery of language. Among the strangest deficits displayed by people after strokes is a lack of awareness that there is a deficit. John Hale made conversation, and even jokes. But it was all in the expression. Though he believed he was uttering words, about the only sound he made was "da woahs", repeated where previously he would have spoken in sentences. It took 18 months of painstaking tuition to teach him what a sentence was.

His was a richer case study than most, because of the dozens of friends and experts who played a part in it. The broader picture of the mind that strokes reveal, and which Sheila Hale discusses in depth, is also remarkable. But the most remarkable thing about her account, which is based on diary entries, is how little her relationship with him seems to have been changed by his loss of language.

She wrote it as a "love letter" to him, which he read in manuscript form before his death in 1999. Medical professionals, however, do not always take kindly to a relative who insists that a patient is special. It is hard to believe that "Dr X", the villain of the story, actually referred to John's fellow patients as "those infarcts", like a child in the playground jeering at "spastics", or that he threatened to make John suffer if she made a fuss. But it is all too easy to believe that was what he meant.

Hale writes the NHS off in principle as well as practice, dismissing it as a system designed to "provide the grateful needy with false teeth and glasses". In her view, Continental systems are better because the state's role is indirect - rather than because other European countries spend more money per citizen on healthcare than we do. She is more persuasive about the lack of ambition that the system visits upon stroke patients.

Slow emergency procedures, she says, prevent the use of drugs which have to be given within three hours. The system is only too ready to decide enough has been done to rehabilitate patients whose progress is slow and who, usually, are past retirement age.

Nor, she might have added, is the complacency limited to the professionals. The word "stroke" does not have the sting of "cancer" or "coronary". But stroke is the third killer after heart disease and cancer in England and Wales, and the leading cause of severe disability. We seem not to be aware of our deficit.