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Özet (abstract)

On Christmas Day 1801 Dorothy Wordsworth wrote in her journal, ‘A very bad day … I went to bed after dinner’. Things had not improved on Boxing Day: ‘My head ached and I lay long in bed and took my breakfast there’. She recorded further headaches on 4 days in February 1802 and 6 days in March, including one spell of four continuous days. Her brother William, at that time engaged in writing many of the poems that would seal his place in the pantheon of English literature, was also afflicted: on New Year’s Eve 1801, Dorothy wrote, ‘William had slept very ill—he was tired and had a bad headache’. And again in February, ‘William [had] a bad headache; he made up a bed on the floor but could not sleep …’ (De Selincourt, 1935). It is clear from Dorothy Wordsworth’s journals and letters that she suffered from recurrent headaches for much of her adult life. The earliest reference that I have come across was in letter written in 1787 at the age of 16; the last in 1829 at the age of 58, shortly before she experienced a serious illness while visiting friends in Halifax. The Grasmere journals, written between 1800 and 1803, are full of Dorothy’s headaches and bowel complaints, and there can be little doubt that her problem was migraine. She employed various means to deal with them—usually resting or sleeping, occasionally going for a walk and rarely taking laudanum. In February 1804, after a particularly severe attack, she wrote to her friend Catherine Clarkson, imploring her to ask the famous Bristol physician Thomas Beddoes what she should do: ‘I began with sickness, violent head-ache, yellow and pale looks … all times when I am not in uncommon strength (as I was before the last attack) after writing for any length of time or doing anything that exerts my thoughts or feelings, I have a very uneasy sense of want and weakness at my stomach, a mixture of emptiness, gnawing, and a sort of preparation for sickness—eating always removes it for a time … William after reading over my letter is not half satisfied with what I have said of myself—he bids me add that I always begin with sickness and that any agitation of mind either of joy or sorrow will bring it on—if any thing puts me past my sleep—for instance—also being in much company and hot rooms … Ever since I can remember going into company always made me have violent head-aches’. Sadly the reply to this letter does not survive, but it is clear that Beddoes’s opinion was sought, for in June she wrote again to Catherine: ‘ … perhaps you may have seen the letter I wrote to him a few days ago from which you would learn how grievously we had mismanaged about the medicines he was so kind as to prescribe for me … You know how inconvenient it is in such cases to be so far from the Apothecary, and how easily one is persuaded to delay from time to time because there is a little trouble in sending, else when we did not get the Scales, though I was so well, we should have certainly sent the medicines back to be weighed by Mr Edmundson. I have been quite well ever since I wrote to you, as if the very name of Dr Beddoes had acted upon me like a charm … ’ Dorothy Wordsworth is somewhat unusual for her era in being literate, but in other respects it is likely that she is very much a typical patient dealing with a chronic neurological condition. She learns to deal with her headaches, recognizing situations that bring them on and devising ways to manage them. She actively uses local resources such as the apothecary, as well as accessible sources of information such as William Buchan’s Domestic medicine. Eventually she goes to the trouble of consulting one of the foremost authorities in the land, but then she fails to take his prescribed medicine. This too, is likely to be absolutely typical; pretty much everything we know about adherence to, or compliance with, prescribed medication regimes suggests that rates are low. Poor compliance may of course be due to a break-down in communication between the doctor and patient: including failure to point out the importance of treatment or the rationale for the choice of therapy prescribed; lack of warning about side effects; or inadequate explanation of dosing regimes. The doctor may not have engaged sufficiently with the patient’s world view, or understand whether the patient wants treatment, a diagnosis or simple reassurance. Receiving an ‘expert’ opinion may be therapeutic in itself; Dorothy Wordsworth certainly seems to think so. I have touched upon the history of one early 19th century patient with a neurological condition to make the general point that patients are, for good or ill, active agents in the processes that determine their health. At one level this is a banal or trite thing to say—of course people are not passive receptacles into which fluids labelled ‘health’ or ‘disease’ are poured—but it is an essential point in the discussion that follows. One must naturally be cautious in extrapolating from the particular to the general, but there can be little doubt that sick people throughout the ages have been active agents in determining what they do about illness and disease. Our first question is, therefore, does the history of medicine as it currently exists, reflect this fact? In their introduction to the essays contained in The neurological patient in history, Stephen Jacyna and Stephen Caspar provide a succinct and useful introduction to the historiography of the patient. They take as their starting point a seminal essay by the late lamented Roy Porter, published in 1985, entitled, ‘The patient’s view: Doing medical history from below’ (Porter, 1985b). In this article Porter exhorts practitioners of the emerging social history of medicine to take patients seriously. Previous histories of medicine are, by this account, almost exclusively written from the point of view of doctors, and to a much lesser extent of public health administrators and nurses. They fail to do justice to patient agency and the rich historical context in which doctors and patients ply their trade. Porter was already mining the rich vein of the 18th century medical world to illustrate this point in a series of coruscating articles and monographs that introduced the concept of the medical marketplace and reinforced the power of the patient in making choices between competing medical practitioners, all of whom needed to make a living in an increasingly consumerist 18th century society. Jacyna and Caspar claim that the brilliance of Porter’s portrayal of this era is in some way an ‘implicit celebration’ of a consumerist approach to medicine that ties in with the political upheavals occurring around the time the article was written, ultimately resulting in the provider–purchaser split in the NHS introduced during the third Thatcher administration. I am not sure that Porter would have recognized this interpretation of his work. It lies rather within a programme of historical enquiry (that includes the work he did with Dorothy Porter on patients and practitioners in early Modern England) that makes the valid historical point that patients have always been active agents in choices and decisions about their health, even if their ability to chose between different doctors is constrained by their social and economic circumstances (Porter, 1985a; Porter and Porter, 1989). An excellent example of this in a slightly later period is George Eliot’s depiction in Middlemarch of how the middle classes, with whom her novel is mostly concerned, generally relied upon the surgeon-apothecaries, Toller and Wrench, and did not normally have recourse to physicians, except ‘when danger was extreme, and when the smallest hope was worth a guinea’ (Eliot, 1874). Jacyna and Caspar also criticize Porter for being ‘fixated upon patients of wealth and reputation’; whilst on one level this is a valid criticism, there can be no doubt that in a era before mass literacy, the most complete accounts of sickness and health necessarily come from the literate upper or professional classes, and that it is extremely difficult to find extensive historical resources that allow one to reconstruct the experience of sickness in other classes of society prior to the 19th century. This is not to say, however, that there are not excellent examples of attempts to do so, such as Mary Fissell’s work on the hospitalized poor in 18th century Bristol (Fissell, 1991). To my mind a more germane criticism of Porter is that the very subtitle of his article, ‘Doing medical history from below’, implies a power relationship of the doctor and patient which is not necessarily reflective of the actual medical encounter, particularly for the period prior to the mid-19th century with which Porter was most concerned. Whilst the medical profession might, and did, strive for ever-increasing degrees of control over its social relations with patients, their patients’ adherence to treatment, and the direction of medicine within society as a whole, it is doubtful that the profession has ever achieved its goals in this process, even at the heights of the deferential society of the 1940s and 50s as epitomized and caricatured in Richard Gordon’s novels or the Carry On films. Whilst Porter’s exhortation has been taken to heart in the development of the history of medicine through its ‘social’ and ‘cultural’ turns of the 1980s and 90s, the very fact that a meeting such as that on which this volume is based was deemed necessary 25 years after the publication of Porter’s essay, stresses the persistent lacune in the fabric of the historical literature where the narratives of patients are concerned, and reminds us just how difficult it is to recapture historical voices and accounts of sickness, illness, disease and death. Jacyna and Caspar are uncomfortably aware that despite their best intentions, their volume may not succeed in this task: most unusually, the volume contains two essays which are analyses of the question as a whole and of the contributions that the other eight essays make to it. As they point out, Roger Cooter’s piece on ‘Neuropatients in historyland’ suggests that the patient ‘remains as elusive as ever’: ‘the hole in the middle of the donut [sic]’, whereas Max Stadler argues instead that by triangulating different constructions of the neurological patient (those of doctors, the legal profession, carers, patient groups and patients themselves), the volume starts to flesh out the neurological patient ‘as a category of historical contemplation’. The substance of The neurological patient in history is contained in eight essays, grouped in four pairs dealing with the question from the point of view of the medical profession, the public and private spheres [specifically the 19th century British legal profession, and the wife of an early 20th century patient with disseminated (multiple) sclerosis], patient groups and patients themselves. The first two articles, by Stephen Caspar on the evolution of the standard neurological examination and Ellen Dwyer on experimental epilepsy studies in inter-war Illinois, are interesting but familiar additions to the literature on the development of neurology as a discipline. Caspar makes convincing points about how structures were created that allowed previously tacit clinical knowledge to be conveyed in a reliable and reproducible manner. To treat this topic in the detail that it deserves is of necessity a huge task and Caspar’s article feels shallow and rushed in places; but it nonetheless tantalizes with some glimpses of the historical process, the most fascinating of which is the concluding discussion of the institutionalization of neurological examination after World War II under the auspices of the splendidly named National Hospital Service Medical Supplies Working Party, which co-opted specialists and asked them to provide a list of equipment required for the performance of their speciality. Denis Williams and Macdonald Critchley duly complied; including familiar equipment such as tuning forks, patella hammers, bottles filled with substances for testing taste and smell, and von Frey hairs, as well more arcane items including special mattresses, toys for child patients and equipment necessary for insulin therapy and electroconvulsive therapy. Marjorie Perlman Lorch’s article on the medico-legal aspects of aphasia in 19th century Britain need not detain us, but the following essay by Katrina Gatley on the Cambridge artist and wood engraver Gwen Raverat, whose husband Jacques was diagnosed with disseminated (multiple) sclerosis in 1915, is a gem. Gatley mines the Raverat family correspondence to present the story of a spouse coping with her sick husband before and after a medical diagnosis is given (in this case by Risien Russell in 1915). Gatley shows how Gwen Raverat interpreted her husband’s behaviour (both physical and emotional) in the context of his neurological disease, and how she used the fact of his illness and of the (at that time) inevitable decline associated with it, to negotiate with him, their family, and the world at large in deciding upon their mode of life as the disease progressed. Despite assimilating the medical understanding of disseminated sclerosis (and using that understanding to her benefit), Gwen found little comfort in this knowledge; as she later wrote, it was ‘the worse thing in the world to watch suffering in helpless understanding’. In her conclusion, Gatley raises interesting questions about the issue of gender in ‘influencing, deciding and delivering the home care and medical care needs of ill spouses’ that would surely repay further research. The articles on the role of patient groups—by Jesse Ballenger on Alzheimer’s disease and Howard Kushner on Tourette’s syndrome—are important contributions to a very sparse literature on these bodies. Any neurologist active over the last half century will recognize the increasing influence that patient groups exert over many areas of the discipline, driving research, political advocacy and local and national care initiatives. There is a tension in this process, particularly evident in Ballenger’s account, when ‘exemplary’ (often famous) sufferers are presented to the public. Ballenger discusses the cases of Rita Hayworth (whose cognitive problems were widely assumed to be alcohol-related), Janet Adkins (who in 1990 ended her own life at an early stage of the disease with the aid of Dr Jack Kevorkian) and Ronald Reagan. There is no doubt that a famous and motivated patient or carer can bring publicity, funding and political clout (Nancy Reagan for Alzheimer’s disease, Michael J Fox for Parkinson’s disease and Christopher Reeve for spinal cord injury, for example—all high profile Americans, interestingly), but are these ‘exemplary’ patients really typical? Can the testaments of the rich and famous truly speak to the experience of chronic neurological disease of less privileged members of society? Does their desire to ‘beat’ their disease (absolutely required to push for research funding) render such patients less suitable as role models for those who wish to understand how to accommodate their lives to chronic neurological disorders? And finally, as Kushner alludes to in his discussion of the role of Tourette’s syndrome support groups, what happens when patient groups themselves marginalize patients with particular manifestations of a disease, or contribute to therapeutic inertia by resisting the withdrawal of drugs whose efficacy has been questioned? All of these questions deserve further consideration. The final pair of essays—Stephen Jacyna’s account of the ‘psychasthenic poet’ Robert Nichols, and Paul Foley’s discussion of patients with encephalitis lethargica—also raise many questions. Foley’s essay again asks whether it is possible to access the experience of patients in whom there is a profound disruption of consciousness, awareness or insight. Discussing the case of the he also points out the of the patient: does the patient even have the In the case of that she The problems by Jacyna’s essay are somewhat understanding condition is did it to be suffering from or in this period are no valid in neurology and suffered a under in Jacyna is about his and little detail of the neurological interpretation because he has one half of the correspondence to and upon some of letters to, and the and George and an interesting account of how upon the work of the Janet to and understand his and manage them. the essay is I find how the rather of an early 20th century are to the understanding of neurological patients, but perhaps I am find such patients days one would his difficult to instead I should patients such as as really rather and and learn from George who as wrote, good at his I know he me but I know when it I rather think it was when he made me my first with one then And he me with from the of on the of fact was so that the went I out and this it is difficult to a what is the point of all should one be in the neurological patient in history, or in the history of in is the point of the history of It is quite to the history of medicine after almost years out of active in the that the has in the through of a of that turns on this very I first the in the late the was to be found very much in the social history of which Roy Porter was a the of the century there was a in the that to the history of medicine in the of In the this seems to have been as much an as an process, as the its of of within medical or and of to that of in general history In this view of the history of medicine was to be a of social or and to be nonetheless to the of the historical In other of the however, the that the history of medicine be of to doctors in and in to be more widely of the articles in an important medical history on the by and the view that the of the history of medicine is to provide a for the medical profession and one the history of medicine as a of general history, or as that for the importance of understanding the past accounts of patients be The neurological patient in history a to that and contains of and I with one final before a history of the patient can be written, a question should be that is by this volume by the literature on the history of It is at what point does a sick a a patient what the medical profession and its much makes of a sick the point of the clinical is to a sick into a what does this have on the sick and those around

Yazarların özeti; kaynağından alınmıştır. Brain, 2013 · DOI ↗