So it was that in the summer of 1988 I discovered America.
Now doesn’t that sound like a very ‘arty’ sort of statement? It comes from Forever Today by Deborah Wearing, and though the lady herself has a musical background, there are parts of this book which should be of great interest to Science 2.0 readers. To give the context, here is the start of the book description.
“Clive Wearing is one of the most famous, extreme cases of amnesia ever known. In 1985, a virus completely destroyed the memory part of his brain, leaving him trapped in a limbo of the constant present. Since then, every conscious moment is for him as if he has just woken from a ten-year coma, repeated in an endless loop. A brilliant conductor and BBC music producer, Clive was at the height of his success when the illness struck. For seven years he was kept in the general ward in the London hospital where the ambulance first dropped him off, because there was nowhere else for him to go. His wife Deborah campaigned for better conditions, hopelessly searched for a cure, and, in her quest to find answers, founded a national charity.”
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The first chapter “Getting Ill” describes the situation, stretched over several days, where Clive Wearing’s condition was not properly recognized because there was a strain of ’flu going round with meningitis-like symptoms. The second chapter “The Time Before” has many interesting vignettes on musical life in those days, including a visit to Germany where life for musicians was much more “cushy” than in Britain, and the British conductor had to work those Germans harder than they had ever experienced!
Chapters 3 to 7 describe increasingly difficult developments after Clive Wearing started to recover from his deep coma with his hippocampus effectively destroyed, but I will concentrate almost exclusively on extracts from Chapter 8 “Finding Answers”, where Deborah Wearing begins to take the British Health establishment by the ears.
It begins with the production of a 1986 Channel 4 documentary entitled Equinox: Prisoner of Consciousness. Thereupon she set up a charity the Amnesia Association (AMNASS for short) [1] Here is what they had to contend with:
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«We quickly built up a picture of where specialist services existed nationwide. In very few places, it seemed, did people with acquired brain injury (ABI) fit into a category of care in the NHS. In a very few enterprising places a local authority or health authority would have created a small extra classification designating funding and services to brain injury. But typically, if the brain damage had caused motor or physical problems, the individual would be seen as a physically disabled person, and cared for under that heading. The rest were largely ignored, unless their behaviour or dependency level was so acute as to make it necessary to give them some kind of care, in which case they were dealt with ad hoc. Sometimes brain-injured people would be lumped in with those suffering from dementias such as Alzheimer’s or Huntington’s Disease, which present an entirely different set of needs and problems; sometimes they ended up in homes for people with learning disabilities or for the elderly, despite being relatively young, and sometimes they were sent home and given very little help or support because the doctors assessing them for benefits had such crude tests that they did not show up even very severe deficits.»
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«One of the biggest causes of brain injury is road accidents, and the biggest group affected is young men. The greatest fear we encountered was that of exhausted, ageing parents who worried what would happen when they died, or when they were no longer fit enough to cope. We began to see that the numbers of people so affected had shot up dramatically as resuscitation techniques and drugs improved. People who before would have died now survived, but with worse brain damage. There was a whole new group of brain injury survivors with more severe problems and no appropriate services to treat or care for them.»
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«If acquired brain injury was not already in anyone’s remit, then no one wanted to take it on now. Every so often a report would be published looking at the problem. The authors were in agreement about how severe the situation was in terms of service provision, but there was no funding, no mandate for change. A report by the Social Services Inspectorate was honest enough to say that one reason for not creating brain injury services was it might ‘open the floodgates’ and be too costly. In the meantime patients like Clive were languishing on expensive and inappropriate hospital wards. They were known in the system as ‘bed-blockers’.»
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«Our problem — and one we kept coming back to — was the dearth of statistics on ABI: the way brain injuries were recorded — or not recorded — in hospitals. Records taken referred to the primary reason for admission rather than to secondary damage, even if this turned out to be, as it generally was with any brain injury, the most debilitating feature of outcome. There were many possible causes of brain damage. For example lack of oxygen, which led to diffuse damage over a wide area, could occur with carbon monoxide poisoning or cardiac arrest. More local and specific damage was caused by aneurysm, cerebral haemorrhage, tumour, and diseases such as meningitis or encephalitis. And then there was the kind of damage caused by chronic alcoholism coupled with a want of thiamine leading to Korsakov’s syndrome, the illness that struck Jimmie G (the case Clive read about shortly before his own amnesia). The chief cause of brain injury was, however, head injury, but even these were often multiple injury cases. It was difficult then to go to the government and say we knew the need was big because they only asked us, ‘How big?’ The Department of Health gave us a sympathetic hearing and talked it over, but although they encouraged us we could get little commitment from them. The sticking point always seemed to be statistics. They needed statistics to justify expenditure but no one seemed prepared to get hospitals to collect them in a different way.»
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«The other thing that taxed us was the fact that paramedic ambulance crews and A&E teams had no set way of gauging whether a patient might be brain-injured. The first hour was crucial in limiting damage and preventing secondary damage, yet hospitals often started treating a fractured jaw while failing to notice rising intra-cranial pressure, brain swelling that would have a far more devastating impact on someone’s life than the broken bones. We were looking for the universal adoption of simple system to ensure that the tell-tale signs of a brain in trouble were picked up straight away.»
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«One of the problems was that there were few precedents for this kind of care in Britain and the authorities would need clinical evidence and examples of best practice to use as models. All our psychologists told me the US was the place to look and spoke of the many kinds of rehab to be found there in a single region.»
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«So it was that in the summer of 1988 I discovered America. With introductions from neuropsych colleagues, I gained entrée to the best units coast to coast, east, west, north and south. I arranged a lecture tour and was offered accommodation in the homes of doctors and psychologists.»
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«It seemed to me they had the whole thing sewn up here [Pittsburgh]. First of all, a percentage of all car tax was paid straight into a fund to deal with care provision after road traffic accidents, so there was a constant pot of public money available. Then the insurance companies who paid out in personal injury cases wanted to have confirmation that their bucks were being used effectively. Weekly reports were submitted on patient progress, so that they could see the long-term economic value of effective rehab, with different services picking up the rehab baton at different stages along the path of recovery.»
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«In Britain, brain-injured people who had physically recovered would return to work and, without help, would repeatedly fail. They would be unable to hold down a job because there were no experts to help them over the humps, modifying behaviour, adjusting tasks, changing the environment, educating colleagues.»
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But in case the reader gets the impression that things were (relatively speaking) hunky-dory in America . . .
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«And I realized that in a place with no developed public health system you were even more likely to be a casualty of circumstances. The penal system there, as in the UK, often neglected to assess suspects or convicts for possible brain injury underlying their apparently criminal behaviour. A brain injury study of prisoners on Texas’ ‘death row’ showed somewhere near 80 per cent of offenders had significant brain damage that might indicate they were not wholly responsible for their behaviour.»
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To continue with the book description:
“As damaged as Clive was, the musical part of his brain was unaffected, as was his passionate love for Deborah. Finding there no way to bring Clive back home, Deborah eventually listened to the friends who counselled her to get away, and she fled to America to start her life again. She initiated a divorce, fell for other men, but found it difficult to forget her love for Clive. Then, miraculously, in their transatlantic phonecalls she noticed Clive starting to recover some of his memory, and she was pulled back to England. Today, although he still lives in care, they are closer than ever, and they renewed their marriage vows in 2002. This is the story of an extreme medical condition that is a reminder of what it is to be human. It is also a woman’s quest to understand, control, and escape from a nightmare. It is also insight into a bond that runs deeper than conscious thought, a love overcoming the most tragic handicap.”
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The remaining five chapters contain an interesting vignette on life in New York, a short time spent during summer in Vermont at an artist’s colony (that word does make me think of chimpanzees!), and much, much more.
Deborah Wearing set out to learn as much as possible about the brain and neuroscience. To finish, what one of the scientists who taught her a lot used to say:
“Well, if our brains were simple enough for us to understand, then we’d be too simple to be able to.”
[1] The Amnesia Association ceased functioning in 1990 for lack of funds and was assumed under the National Head Injury Unit, though local groups continued to meet (from Case Studies in Neuropsychological Rehabilitation by Barbara A. Wilson)
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