- Email: [email protected]
MULTIPLE SCLEROSIS
1208
conditions such as heart disease. 11 Modern medicine ignores the importance of loving with regard to staying healthy and
getting well-hospitals are asexual,
even
Disabilities and How to Live with Them
anti-sexual.
Another future aim should be the increasing appreciation that lay health-care is the most important health care (Fry J. Self-care: its place in the total health care system, unpublished manuscript, Kent, U.K., 1973).12-15 Scientific medicine is often unsuccessful with problems such as alcoholism, whereas the lay approach may succeed-which poses another threat to the professionalism of doctors. My own medical education and years of clinical work have negatively reinforced my powers of intuitive thought and subjective analysis. Doctors need to begin the long, painful process of reorientation, and our entire system of medical education needs to change-merely adding a sociologist to the faculty and offering an elective course will not suffice! The trend towards lay care, however, will proceed whether or not doctors agree with it. Women have already taken the vaginal speculum in their hands and they are demanding control of their deliveries. Finally, professional health care must be rehumanised and deinstitutionalised. This means that the medical profession must relinquish control. Indeed, many of the fundamental issues in health care are about power and control. The theatre play, "Whose Life is it Anyway?",16 eloquently illustrated the power hospitals have over human life. Doctors, to remain in control, must work within their own territory, which may be why so many oppose homebirth. The home is a familiar physical and emotional environment wherein the woman feels relaxed and secure so that a smooth birth can be facilitated. The one country in Europe with over one third of all births taking place at home (Holland) is also the country with the lowest or near lowest mortality figures. 17 In Europe, I have even witnessed attempts to manipulate mortality and morbidity statistics in order to prove that homebirth is dangerous.l8 In some places, moreover, the medical profession has denied its techniques to women who choose homebirth. Women know that they cannot assume control so long as they deliver their babies in hospital. Eventually, therefore, professional care must be brought to the home where it can also be used humanely with regard to dying, and gradually with more and more other experiences. These trends have to do with correcting the balance in health care. It is also important to correct the balance in medical science. Anthropology has always understood that the state of consciousness of the observer affects the data. Cicoural’9 pointed this out 20 years ago with regard to sociology, but medical sociology is still struggling with the idea. Last January, W.H.O. held a meeting in Geneva on the subject of home-based medical records. The notion that people should take responsibility for their own medical records and actively participate in the planning of research into their own health care has grown more popular. Research projects based on these ideas have often failed due to lack of funds. In the U.K., for example, the Peckham Experiment,20 which combined primary health care and primary social care with user involvement, failed for this reason. I see the ’80s as a decade of alternative health care services. I believe that when W.H.O. declares "Health for All by the Year 2000", that the year 2000 will find the correct balance of the dichotomy between art and science in health. People will themselves be in control of the struggle for a fulfilling and healthy life without the invasive, controlling, and sometimes disabling help of our present system of health care.
MULTIPLE SCLEROSIS ON Boxing Day, 1974, the picture on our television set suddenly went completely grey. I soon realised, however, that half the living room was covered in a grey mist. Thinking I had eye strain I made an appointment, as soon as the holiday was over, to have my eyes tested. The optician informed me that my sight was deteriorating rapidly-unusual for someone only just in her twenties. When I found that my glasses were of no help, I remembered the optician’s words and visited my GP. This decision was not taken lightly since, for the previous three years, I seemed to have been attending his surgery frequently with symptoms for which he could find no cause. Before my marriage I had lost the use of my right arm: that was diagnosed as "neurasthenia", and my blinding headaches were attributed to tension. Even more embarrassing, by the time I arrived at the surgery the symptoms had disappeared. I was consistently offered tranquillisers which made me deeply depressed because I thought all my problems were imaginary and that I might be going mad. I visited my GP and explained my sight problems and after some persuasion he agreed that I should see an eye specialist.
The consultant was marvellous. He tested my eyes and obviously found something interesting since many people were asked to come and look. I was questioned about my medical history and my current symptoms. Not only could I not see properly but my headaches were becoming more frequent and I was falling over often. In the next few months I attended hospital regularly. I felt increasingly tired and everything was an effort. I thought I was either dying from a brain tumour or was a hopeless hypochondriac. The mistiness slowly disappeared from one eye but soon appeared in the other. The strain was breaking up my marriage. The vision improved in both eyes and although the mistiness had gone I could not see as well as I once had. I was M. G. WAGNER: REFERENCES 1. Illich I. Medical nemesis: the expropriation of health. New York: Pantheon Books, 1976. 2. Cochrane AL. Effectiveness and efficiency: random reflections on health services. London: Nuffield Provincial Hospital Trust, 1972. 3. McKeown T. Medicine—dream, mirage or nemesis. Oxford: Blackwells, 1979 4. Capra F. The Tao of physics. New York: Bantam Books, 1977. 5. Pirsig RM. Zen and the art of motorcycle maintenance. New York: Bantam Books, 1975. 6. Laing RD. Sanity, madness and the family. Harmondsworth: Penguin Books, 1971. 7. Chalmers I. Randomised trials of interpartum fetal heart monitoring 1973-77. In: Thalhammer O, ed. Perinatal Medicine. Basel: Kruger, 1980. 8. Thacker S, Banta HD. Benefits and risks of episiotomy; an interpretive review of the English language literature from 1860-1980. In: Young D, ed. Obstetric Technology in the 1980s. New York: Haworth (in press). 9. Fraser C. Selected perinatal procedures: their scientific basis for use and psychosocial effects—a literature review. Acta Scand Obstet (in press). 10. Berkman L, Syme L. Social networks, host resistance and mortality, a 9-year follow-up study of Alameda residents. Am J Epidemiol 1979, 109: 186-204 11. Lynch J. The broken heart: medical consequences of loneliness. New York: Harper and Row. 12. Williamson JD, Danaher K. Self care in health. New York: Neil Watson, 1978. 13. Pedersen P. Patienters selv-behandling inden henvendelse til praktiserende laeger, Udskrift for Laeger 1976; 128: 1955. 14. Dean K, Holst E, Wagner M. Self-care of common illnesses in Denmark Medical Care
(in press). Levin L, Katz A, Holst E Self-care: lay initiatives in health. New York: Prodist, 1979 Whose Life is it Anyway? A play by Brian Clark and also a Metro Goldwyn Meyer film. World Health Statistical Report (vol. 34, no. 4) Geneva: W.H.O., 1981. Tew M. Effect of scientific obstetrics on perinatal mortality. J Hlth Soc Serv April 17, 1981, 4444-46. 19. Cicourel A. Method and measurement in sociology, New York: Free Press, 1964. 20. Pearse I, Crocker L. The Peckham Experiment London: Allan and Unwin, 1943. 15. 16. 17. 18.
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working for a large public corporation and my immediate colleagues were kind and supportive and did my work while I attended hospital. However, they could not help my marriage, which ended in divorce by mutual consent. A short time later I was walking down a main London street when suddenly everything went grey and I could see nothing. Somehow I reached my office and was sent off to hospital. I was asked to read the eye chart but could not even see it let alone read the letters. The eye specialist said he would like me to meet the hospital’s neurologist. It was that suggestion, I think, which reminded me of my father who for many years had been in and out of hospitals for nervous diseases. His symptoms, which had been very similar to mine, had been ascribed to shrapnel from war wounds. It was only the day before he died that my mother and I were told that he had multiple sclerosis.
I saw the neurologist and underwent tests that were to become all too familiar over the next few years. I asked ifhad MS and was told it was possible or that it could be a similar disease. I could not get a straight answer: one doctor would say I had MS, another would deny it, and yet another would say maybe. I would stagger around receiving weird looks from everyone, who must have thought me high on drugs. To avoid arrest I decided to get a ’Medic-Alert’ bracelet. To obtain this my diagnosis had to be confirmed. A confrontation took place and, after some confusion since one doctor was unaware that I already knew the diagnosis, it was agreed that I had MS. Oddly enough, I still did not believe it since for long I had been told that it was my imagination. I changed my GP and everything else changed. My new GP was sympathetic and she took time to discuss many aspects of MS. It was an intense relief to me that I was not going mad and that I had a specific condition. I now knew what I was up against and could fight it; my main worry was that my employers might find out. Since my marriage had broken up I was determined to reach the top in my career, and to disclose that I had MS could well have ruined my promotion chances. Needless to say, I could not conceal my illness for long. I confessed and almost immediately saw a change in attitude: sympathy and fear rolled into one. I made it clear that I wished to be treated normally. Ignorance about the disease instilled fear-my chances of promotion were in jeopardy and I once promised not to drop dead without twenty-four hours notice, particularly not from MS. That was probably the only time that I felt angry-my normal reaction is to dissolve into tears. I have always been sensitive to remarks, but MS exacerbates that sensitivity ten fold. Two people bear the brunt-my mother and my GP. They have probably given up counting the number of times they have had to pick up the pieces. The rest of the world sees a different face. I fill every moment with my career, voluntary work, writing, and visiting new places. I push myself to the extreme at the risk of further damaging my health. I believe this is far better than sitting and waiting for a cure. To look back on the last summer holiday I spent when I could still walk is hilarious, but the holiday was disastrous at the time. I would walk a few steps and be so exhausted that I had to sit down. Having sat down I would need a toilet. Having found that, I then needed a rest, and so on. Instead of a self-catering holiday I had gone with my mother to a hotel to give her a rest. We have now reverted to self catering in a flat. We visit the same town each year and, although the flat is not specifically adapted, it is ideal. The owners, as soon as I began using a wheelchair, made a portable ramp for the entrance
and store it away until our fortnight’s break each year. The local people know me and have watched me become more disabled, but because of that they are very helpful. A local coach firm happily transports me on both local excursions and trips abroad. The theatres are fully accessible and, most important of all, I have a key to all the local toilets for the disabled; but that does not absolve me from carrying a fortnight’s supply of incontinence pads-just in case. To me holidays geared specifically for people with disabilities have no challenge. Events are organised, some of which are unusual, but anything I do on a "normal" holiday is an adventure because of the unexpected. If all disabled people went on organised holidays then other people would never have a chance to meet them and see them in a normal environment. now promise myself to do two new things or visit new places every year. MS means that you never know what even the next day will bring. What you are capable of one year you might not be able to do the next. Am I pessimistic? No. When I lost my sight I did not wait for it to return, I accepted it and adapted. If it returns, no matter how poorly, it must be a bonus. Similarly, I do not bemoan the restrictions that a wheelchair imposes. My philosophy is to attempt to go anywhere almost and if that is not possible to do something
I
about it. Sometimes a short letter can work. I found that, although I could operate my bank’s cash card machine I could not reach the money. I was told that they had not realised and
they promised to install all future machines slightly lower. Psychologically, I think I have adapted quite well. Admittedly, life is less spontaneous since, for example, access and location of adapted toilets has to be carefully planned. It is frustrating to battle continually with bureaucracy as I had to do, particularly over my allowances for attendance and fares. Some people’s attitudes can also be hard to understand. For example, the conversation through a third party, the "how well you look" comment when you look and feel awful, and the assumption that being in a wheelchair means paralysis with no other physical problems. Thank goodness such people are the exception. -
To not see; to have problems with your arms; to be so often engulfed in an enormous waft of tiredness: these are invisible handicaps. My poor eyesight makes driving impossible and I am solely reliant upon taxis. This further restricts my mobility, if only because of the cost. I tire very easily but work at full output while possible. This presents difficulties at work and I still feel that I must constantly prove myself and, sadly, can see all further promotion prospects slipping away. Not without a fight, I hasten to add. Pain is yet another invisible handicap. Many say that MS is painless. I would dispute this strongly, and I believe I have a high pain tolerance. The blinding headaches I get are totally different from any other kind of headache. The pain is so intense that even a pillow hurts. Moving or coughing is painful and when the headache goes I am left overwhelmed by tiredness. No painkillers help and the only slight reliefis from a neck pillow so that the head is not in contact with anything. I also have occasional difficulties caused by a continuous ache and a pain in my stomach every time that I eat or drink something. I also have uncontrollable bouts of coughing where one side of my throat seems to seize up. I have never had an explanation or a solution but other MS patients have told me of similar phenomena. These are frightening experiences, not necessarily because of the intensity of pain,
,
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each day and each problem as it comes and not to expect too much. I am lucky in having an exceptional mother who is always there; not necessarily to fight on my behalf but to comfort me and help me to smile and cope. To me, smiling and coping is a means of survival, and the days of the chronic invalid languishing waxen and wan on a chaise longue are gone for ever. JANETTE GOULD
but because they are misunderstood. Perhaps they can only be understood if experienced. Bereavement can occur over loss of function or ability in MS, but I never noticed this. My disease progressed slowly and I was able to adjust gradually. In retrospect, I was probably experiencing symptoms while still at school. I think that the only way to come to terms with the disease is to take
Occasional Book REALITIES OF COMMUNITY MENTAL CARE
-
THE idea of community care is generally approved of by mental health reformers. There is less certainty about whether the concept is accepted by the public and how it can be put into practice. Two new books 1,2 discuss these aspects of "deinstitutionalisation". M. J. Dear and S. M. Taylor, two geographers from McMaster University, are concerned with the siting of mental health clinics and centres in local communities in Toronto, and the attitudes of local residents. Their methods are quantitative and objective. Holly Wilson, a nurse and sociologist, writes an account of one residential settlement for "persons labelled schizophrenics" in San Jose, California. Her method is qualitative and highly subjective. The two books thus stand at opposite ends of a methodological continuum, and also differ in knowledge bases, perspectives, focus, and aims. What is remarkable is how much they have is common. Both start from an assumption that the case against medically oriented, hospital-based psychiatric care is fully proved. Both share a somewhat uncritical adherence to the tenets of the anti-psychiatry school; and both come, in spite of that, to similar and depressing conclusions about the realities of community care. Dear and Taylor start with some interesting questions: is the general public sympathetic to the development of community-based mental health services? What makes for an accepting or a rejecting neighbourhood? How can facilities be sited to minimise rejection? Their theoretical base is in public facility location theory, a technique of decision-making which involves such questions as ease of access, the availability and cost of land, and the maximisation of demand. After a lengthy discussion of the validity of mathematical planning frameworks and microeconomic approaches such as costbenefit analysis, they conclude that the theory must be "consciously embedded in a wider theory of society"; and at this point, they begin to move away from their own expertise into areas where their competence is less certain. There are two very sketchy chapters, better omitted, on the rise and fall of the mental hospital system and "beliefs about mental illness and mental patients" in which many sources are quoted and some of them misunderstood. Eventually the authors proceed to the design of their research project: an attitude survey involving two multi-stage samples, one from an area with a number of community mental health facilities, and another from an area with none. Over a thousand questionnaires were completed, though the response rate (52%) was disappointing. The exhaustive survey showed "no strong profile" but, on the whole, accepting neighbourhoods have a high proportion of transients, high population density, a well-educated Englishspeaking population and few children. Conversely, rejecting neighbourhoods have a stable residential pattern, low population density, a less well-educated population of diverse ethnic origin, and many children. Dear and Taylor refer to the limited explanatory power of regression analysis. Their method tells us only about factors which may be of importance, not how they may be combined. °
J. Dear and S. M. Taylor. Not on Our Street: Community Attitudes to Mental Health Care. London: Pion. 1982. Pp. 182. £9.50. 2. Holly Skodol Wilson. Deinstitutionalised Care for the Mentally Disordered: The Soteria House Approach. New York and London: Grune & Stratton. 1982 Pp. 138. 1. M.
$19.50.
Consequently, it is not clear whether the data can be used to draw a profile of a single type of neighbourhood or whether two or three different types of neighbourhood are indicated; but in broad terms the message is clear enough-suburban residential areas with young families and high levels of social cohesion are likely to be rejecting of mental health facilities, while inner city areas with a transient population and low levels of social cohesion are likely to be accepting. When Dear and Taylor plotted out the existing mental health facilities against the attitudes revealed by their survey, they found that, whether by luck or judgment, they were sited in such inner city areas; but "accepting" was perhaps not the appropriate description. Many of the respondents to the questionnaire did not know of the existence of the mental health facilities. Among the rapidlychanging population of the apartment blocks and rooming houses, the clientele of the mental health services passed almost unnoticed. Soteria House (the name comes from the Greek word for sanctuary or asylum, which is somewhat ironic) is in such an area. The house, which "no doubt has seen better days", is in a neighbourhood just off a street of "gaudy drive-in restaurants, gasoline stations and a variety of shabby stores", and the neighbours are "a heterogeneous collection of hippies, transients and members of ethnic minority groups". The Soteria community is very small indeed-six residents, a part-time psychiatrist, a project director who is a psychiatric social worker, six other staff and some volunteers consisting of "disenchanted anti-establishment graduate students in psychology", ex-residents, and "a variety of seekers ... experimenting with alternative life-styles". Their common interests are "organic foods, spiritual and mystical literature, underground music..." This very Californian venture is officially run on the lines pioneered by R. D. Laing at Kingsley Hall. The theory is one of "letting be" and "being with"-holding, listening, caring, "leading patients through psychosis, letting them go where it takes them, and trying to make it less frightening rather than trying to quell it with drugs". The language is phenomenological: there is no meals just happen, people do their own thing; but there are violent and bizarre incidents, and staff tend to burn out rather quickly. There are basic contradictions, and Holly Wilson is honest about them. The ethos is strongly anti-medical-her own bibliography is drawn almost exclusively from the literature ofanti-psychiatry-but the psychiatrist and the project director employ medical models and medical terminology in describing it to medical audiences and funding agencies. The project is funded by the National Institute of Mental Health in Washington, D.C., and by the Mental Research Institute at Palo Alto, California. Yet few medical visitors are allowed, and those only for brief visits. Most have to be satisfied with research papers and meetings and presentations prepared by the house research group. Though senior staff lace their presentations with references to Laing and the masters of deviancy theory and symbolic interactionism, a staff member said, "Nobody’s ever made much of the theory part". The community is overtly egalitarian, yet staff get paid and residents pay fees; senior staff have power (including the power to dismiss other staff, volunteers and residents) and sometimes exercise it; residents’ behaviour goes uncriticised-and yet there is a constant weight of unspoken evaluation. The six residents are highly selected: they are aged between 16 and 23, are usually White, and have no evidence of organic impairment, no previous mental hospital admissions, and no close
organisation,
conditions such as heart disease. 11 Modern medicine ignores the importance of loving with regard to staying healthy and
getting well-hospitals are asexual,
even
Disabilities and How to Live with Them
anti-sexual.
Another future aim should be the increasing appreciation that lay health-care is the most important health care (Fry J. Self-care: its place in the total health care system, unpublished manuscript, Kent, U.K., 1973).12-15 Scientific medicine is often unsuccessful with problems such as alcoholism, whereas the lay approach may succeed-which poses another threat to the professionalism of doctors. My own medical education and years of clinical work have negatively reinforced my powers of intuitive thought and subjective analysis. Doctors need to begin the long, painful process of reorientation, and our entire system of medical education needs to change-merely adding a sociologist to the faculty and offering an elective course will not suffice! The trend towards lay care, however, will proceed whether or not doctors agree with it. Women have already taken the vaginal speculum in their hands and they are demanding control of their deliveries. Finally, professional health care must be rehumanised and deinstitutionalised. This means that the medical profession must relinquish control. Indeed, many of the fundamental issues in health care are about power and control. The theatre play, "Whose Life is it Anyway?",16 eloquently illustrated the power hospitals have over human life. Doctors, to remain in control, must work within their own territory, which may be why so many oppose homebirth. The home is a familiar physical and emotional environment wherein the woman feels relaxed and secure so that a smooth birth can be facilitated. The one country in Europe with over one third of all births taking place at home (Holland) is also the country with the lowest or near lowest mortality figures. 17 In Europe, I have even witnessed attempts to manipulate mortality and morbidity statistics in order to prove that homebirth is dangerous.l8 In some places, moreover, the medical profession has denied its techniques to women who choose homebirth. Women know that they cannot assume control so long as they deliver their babies in hospital. Eventually, therefore, professional care must be brought to the home where it can also be used humanely with regard to dying, and gradually with more and more other experiences. These trends have to do with correcting the balance in health care. It is also important to correct the balance in medical science. Anthropology has always understood that the state of consciousness of the observer affects the data. Cicoural’9 pointed this out 20 years ago with regard to sociology, but medical sociology is still struggling with the idea. Last January, W.H.O. held a meeting in Geneva on the subject of home-based medical records. The notion that people should take responsibility for their own medical records and actively participate in the planning of research into their own health care has grown more popular. Research projects based on these ideas have often failed due to lack of funds. In the U.K., for example, the Peckham Experiment,20 which combined primary health care and primary social care with user involvement, failed for this reason. I see the ’80s as a decade of alternative health care services. I believe that when W.H.O. declares "Health for All by the Year 2000", that the year 2000 will find the correct balance of the dichotomy between art and science in health. People will themselves be in control of the struggle for a fulfilling and healthy life without the invasive, controlling, and sometimes disabling help of our present system of health care.
MULTIPLE SCLEROSIS ON Boxing Day, 1974, the picture on our television set suddenly went completely grey. I soon realised, however, that half the living room was covered in a grey mist. Thinking I had eye strain I made an appointment, as soon as the holiday was over, to have my eyes tested. The optician informed me that my sight was deteriorating rapidly-unusual for someone only just in her twenties. When I found that my glasses were of no help, I remembered the optician’s words and visited my GP. This decision was not taken lightly since, for the previous three years, I seemed to have been attending his surgery frequently with symptoms for which he could find no cause. Before my marriage I had lost the use of my right arm: that was diagnosed as "neurasthenia", and my blinding headaches were attributed to tension. Even more embarrassing, by the time I arrived at the surgery the symptoms had disappeared. I was consistently offered tranquillisers which made me deeply depressed because I thought all my problems were imaginary and that I might be going mad. I visited my GP and explained my sight problems and after some persuasion he agreed that I should see an eye specialist.
The consultant was marvellous. He tested my eyes and obviously found something interesting since many people were asked to come and look. I was questioned about my medical history and my current symptoms. Not only could I not see properly but my headaches were becoming more frequent and I was falling over often. In the next few months I attended hospital regularly. I felt increasingly tired and everything was an effort. I thought I was either dying from a brain tumour or was a hopeless hypochondriac. The mistiness slowly disappeared from one eye but soon appeared in the other. The strain was breaking up my marriage. The vision improved in both eyes and although the mistiness had gone I could not see as well as I once had. I was M. G. WAGNER: REFERENCES 1. Illich I. Medical nemesis: the expropriation of health. New York: Pantheon Books, 1976. 2. Cochrane AL. Effectiveness and efficiency: random reflections on health services. London: Nuffield Provincial Hospital Trust, 1972. 3. McKeown T. Medicine—dream, mirage or nemesis. Oxford: Blackwells, 1979 4. Capra F. The Tao of physics. New York: Bantam Books, 1977. 5. Pirsig RM. Zen and the art of motorcycle maintenance. New York: Bantam Books, 1975. 6. Laing RD. Sanity, madness and the family. Harmondsworth: Penguin Books, 1971. 7. Chalmers I. Randomised trials of interpartum fetal heart monitoring 1973-77. In: Thalhammer O, ed. Perinatal Medicine. Basel: Kruger, 1980. 8. Thacker S, Banta HD. Benefits and risks of episiotomy; an interpretive review of the English language literature from 1860-1980. In: Young D, ed. Obstetric Technology in the 1980s. New York: Haworth (in press). 9. Fraser C. Selected perinatal procedures: their scientific basis for use and psychosocial effects—a literature review. Acta Scand Obstet (in press). 10. Berkman L, Syme L. Social networks, host resistance and mortality, a 9-year follow-up study of Alameda residents. Am J Epidemiol 1979, 109: 186-204 11. Lynch J. The broken heart: medical consequences of loneliness. New York: Harper and Row. 12. Williamson JD, Danaher K. Self care in health. New York: Neil Watson, 1978. 13. Pedersen P. Patienters selv-behandling inden henvendelse til praktiserende laeger, Udskrift for Laeger 1976; 128: 1955. 14. Dean K, Holst E, Wagner M. Self-care of common illnesses in Denmark Medical Care
(in press). Levin L, Katz A, Holst E Self-care: lay initiatives in health. New York: Prodist, 1979 Whose Life is it Anyway? A play by Brian Clark and also a Metro Goldwyn Meyer film. World Health Statistical Report (vol. 34, no. 4) Geneva: W.H.O., 1981. Tew M. Effect of scientific obstetrics on perinatal mortality. J Hlth Soc Serv April 17, 1981, 4444-46. 19. Cicourel A. Method and measurement in sociology, New York: Free Press, 1964. 20. Pearse I, Crocker L. The Peckham Experiment London: Allan and Unwin, 1943. 15. 16. 17. 18.
1209
working for a large public corporation and my immediate colleagues were kind and supportive and did my work while I attended hospital. However, they could not help my marriage, which ended in divorce by mutual consent. A short time later I was walking down a main London street when suddenly everything went grey and I could see nothing. Somehow I reached my office and was sent off to hospital. I was asked to read the eye chart but could not even see it let alone read the letters. The eye specialist said he would like me to meet the hospital’s neurologist. It was that suggestion, I think, which reminded me of my father who for many years had been in and out of hospitals for nervous diseases. His symptoms, which had been very similar to mine, had been ascribed to shrapnel from war wounds. It was only the day before he died that my mother and I were told that he had multiple sclerosis.
I saw the neurologist and underwent tests that were to become all too familiar over the next few years. I asked ifhad MS and was told it was possible or that it could be a similar disease. I could not get a straight answer: one doctor would say I had MS, another would deny it, and yet another would say maybe. I would stagger around receiving weird looks from everyone, who must have thought me high on drugs. To avoid arrest I decided to get a ’Medic-Alert’ bracelet. To obtain this my diagnosis had to be confirmed. A confrontation took place and, after some confusion since one doctor was unaware that I already knew the diagnosis, it was agreed that I had MS. Oddly enough, I still did not believe it since for long I had been told that it was my imagination. I changed my GP and everything else changed. My new GP was sympathetic and she took time to discuss many aspects of MS. It was an intense relief to me that I was not going mad and that I had a specific condition. I now knew what I was up against and could fight it; my main worry was that my employers might find out. Since my marriage had broken up I was determined to reach the top in my career, and to disclose that I had MS could well have ruined my promotion chances. Needless to say, I could not conceal my illness for long. I confessed and almost immediately saw a change in attitude: sympathy and fear rolled into one. I made it clear that I wished to be treated normally. Ignorance about the disease instilled fear-my chances of promotion were in jeopardy and I once promised not to drop dead without twenty-four hours notice, particularly not from MS. That was probably the only time that I felt angry-my normal reaction is to dissolve into tears. I have always been sensitive to remarks, but MS exacerbates that sensitivity ten fold. Two people bear the brunt-my mother and my GP. They have probably given up counting the number of times they have had to pick up the pieces. The rest of the world sees a different face. I fill every moment with my career, voluntary work, writing, and visiting new places. I push myself to the extreme at the risk of further damaging my health. I believe this is far better than sitting and waiting for a cure. To look back on the last summer holiday I spent when I could still walk is hilarious, but the holiday was disastrous at the time. I would walk a few steps and be so exhausted that I had to sit down. Having sat down I would need a toilet. Having found that, I then needed a rest, and so on. Instead of a self-catering holiday I had gone with my mother to a hotel to give her a rest. We have now reverted to self catering in a flat. We visit the same town each year and, although the flat is not specifically adapted, it is ideal. The owners, as soon as I began using a wheelchair, made a portable ramp for the entrance
and store it away until our fortnight’s break each year. The local people know me and have watched me become more disabled, but because of that they are very helpful. A local coach firm happily transports me on both local excursions and trips abroad. The theatres are fully accessible and, most important of all, I have a key to all the local toilets for the disabled; but that does not absolve me from carrying a fortnight’s supply of incontinence pads-just in case. To me holidays geared specifically for people with disabilities have no challenge. Events are organised, some of which are unusual, but anything I do on a "normal" holiday is an adventure because of the unexpected. If all disabled people went on organised holidays then other people would never have a chance to meet them and see them in a normal environment. now promise myself to do two new things or visit new places every year. MS means that you never know what even the next day will bring. What you are capable of one year you might not be able to do the next. Am I pessimistic? No. When I lost my sight I did not wait for it to return, I accepted it and adapted. If it returns, no matter how poorly, it must be a bonus. Similarly, I do not bemoan the restrictions that a wheelchair imposes. My philosophy is to attempt to go anywhere almost and if that is not possible to do something
I
about it. Sometimes a short letter can work. I found that, although I could operate my bank’s cash card machine I could not reach the money. I was told that they had not realised and
they promised to install all future machines slightly lower. Psychologically, I think I have adapted quite well. Admittedly, life is less spontaneous since, for example, access and location of adapted toilets has to be carefully planned. It is frustrating to battle continually with bureaucracy as I had to do, particularly over my allowances for attendance and fares. Some people’s attitudes can also be hard to understand. For example, the conversation through a third party, the "how well you look" comment when you look and feel awful, and the assumption that being in a wheelchair means paralysis with no other physical problems. Thank goodness such people are the exception. -
To not see; to have problems with your arms; to be so often engulfed in an enormous waft of tiredness: these are invisible handicaps. My poor eyesight makes driving impossible and I am solely reliant upon taxis. This further restricts my mobility, if only because of the cost. I tire very easily but work at full output while possible. This presents difficulties at work and I still feel that I must constantly prove myself and, sadly, can see all further promotion prospects slipping away. Not without a fight, I hasten to add. Pain is yet another invisible handicap. Many say that MS is painless. I would dispute this strongly, and I believe I have a high pain tolerance. The blinding headaches I get are totally different from any other kind of headache. The pain is so intense that even a pillow hurts. Moving or coughing is painful and when the headache goes I am left overwhelmed by tiredness. No painkillers help and the only slight reliefis from a neck pillow so that the head is not in contact with anything. I also have occasional difficulties caused by a continuous ache and a pain in my stomach every time that I eat or drink something. I also have uncontrollable bouts of coughing where one side of my throat seems to seize up. I have never had an explanation or a solution but other MS patients have told me of similar phenomena. These are frightening experiences, not necessarily because of the intensity of pain,
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each day and each problem as it comes and not to expect too much. I am lucky in having an exceptional mother who is always there; not necessarily to fight on my behalf but to comfort me and help me to smile and cope. To me, smiling and coping is a means of survival, and the days of the chronic invalid languishing waxen and wan on a chaise longue are gone for ever. JANETTE GOULD
but because they are misunderstood. Perhaps they can only be understood if experienced. Bereavement can occur over loss of function or ability in MS, but I never noticed this. My disease progressed slowly and I was able to adjust gradually. In retrospect, I was probably experiencing symptoms while still at school. I think that the only way to come to terms with the disease is to take
Occasional Book REALITIES OF COMMUNITY MENTAL CARE
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THE idea of community care is generally approved of by mental health reformers. There is less certainty about whether the concept is accepted by the public and how it can be put into practice. Two new books 1,2 discuss these aspects of "deinstitutionalisation". M. J. Dear and S. M. Taylor, two geographers from McMaster University, are concerned with the siting of mental health clinics and centres in local communities in Toronto, and the attitudes of local residents. Their methods are quantitative and objective. Holly Wilson, a nurse and sociologist, writes an account of one residential settlement for "persons labelled schizophrenics" in San Jose, California. Her method is qualitative and highly subjective. The two books thus stand at opposite ends of a methodological continuum, and also differ in knowledge bases, perspectives, focus, and aims. What is remarkable is how much they have is common. Both start from an assumption that the case against medically oriented, hospital-based psychiatric care is fully proved. Both share a somewhat uncritical adherence to the tenets of the anti-psychiatry school; and both come, in spite of that, to similar and depressing conclusions about the realities of community care. Dear and Taylor start with some interesting questions: is the general public sympathetic to the development of community-based mental health services? What makes for an accepting or a rejecting neighbourhood? How can facilities be sited to minimise rejection? Their theoretical base is in public facility location theory, a technique of decision-making which involves such questions as ease of access, the availability and cost of land, and the maximisation of demand. After a lengthy discussion of the validity of mathematical planning frameworks and microeconomic approaches such as costbenefit analysis, they conclude that the theory must be "consciously embedded in a wider theory of society"; and at this point, they begin to move away from their own expertise into areas where their competence is less certain. There are two very sketchy chapters, better omitted, on the rise and fall of the mental hospital system and "beliefs about mental illness and mental patients" in which many sources are quoted and some of them misunderstood. Eventually the authors proceed to the design of their research project: an attitude survey involving two multi-stage samples, one from an area with a number of community mental health facilities, and another from an area with none. Over a thousand questionnaires were completed, though the response rate (52%) was disappointing. The exhaustive survey showed "no strong profile" but, on the whole, accepting neighbourhoods have a high proportion of transients, high population density, a well-educated Englishspeaking population and few children. Conversely, rejecting neighbourhoods have a stable residential pattern, low population density, a less well-educated population of diverse ethnic origin, and many children. Dear and Taylor refer to the limited explanatory power of regression analysis. Their method tells us only about factors which may be of importance, not how they may be combined. °
J. Dear and S. M. Taylor. Not on Our Street: Community Attitudes to Mental Health Care. London: Pion. 1982. Pp. 182. £9.50. 2. Holly Skodol Wilson. Deinstitutionalised Care for the Mentally Disordered: The Soteria House Approach. New York and London: Grune & Stratton. 1982 Pp. 138. 1. M.
$19.50.
Consequently, it is not clear whether the data can be used to draw a profile of a single type of neighbourhood or whether two or three different types of neighbourhood are indicated; but in broad terms the message is clear enough-suburban residential areas with young families and high levels of social cohesion are likely to be rejecting of mental health facilities, while inner city areas with a transient population and low levels of social cohesion are likely to be accepting. When Dear and Taylor plotted out the existing mental health facilities against the attitudes revealed by their survey, they found that, whether by luck or judgment, they were sited in such inner city areas; but "accepting" was perhaps not the appropriate description. Many of the respondents to the questionnaire did not know of the existence of the mental health facilities. Among the rapidlychanging population of the apartment blocks and rooming houses, the clientele of the mental health services passed almost unnoticed. Soteria House (the name comes from the Greek word for sanctuary or asylum, which is somewhat ironic) is in such an area. The house, which "no doubt has seen better days", is in a neighbourhood just off a street of "gaudy drive-in restaurants, gasoline stations and a variety of shabby stores", and the neighbours are "a heterogeneous collection of hippies, transients and members of ethnic minority groups". The Soteria community is very small indeed-six residents, a part-time psychiatrist, a project director who is a psychiatric social worker, six other staff and some volunteers consisting of "disenchanted anti-establishment graduate students in psychology", ex-residents, and "a variety of seekers ... experimenting with alternative life-styles". Their common interests are "organic foods, spiritual and mystical literature, underground music..." This very Californian venture is officially run on the lines pioneered by R. D. Laing at Kingsley Hall. The theory is one of "letting be" and "being with"-holding, listening, caring, "leading patients through psychosis, letting them go where it takes them, and trying to make it less frightening rather than trying to quell it with drugs". The language is phenomenological: there is no meals just happen, people do their own thing; but there are violent and bizarre incidents, and staff tend to burn out rather quickly. There are basic contradictions, and Holly Wilson is honest about them. The ethos is strongly anti-medical-her own bibliography is drawn almost exclusively from the literature ofanti-psychiatry-but the psychiatrist and the project director employ medical models and medical terminology in describing it to medical audiences and funding agencies. The project is funded by the National Institute of Mental Health in Washington, D.C., and by the Mental Research Institute at Palo Alto, California. Yet few medical visitors are allowed, and those only for brief visits. Most have to be satisfied with research papers and meetings and presentations prepared by the house research group. Though senior staff lace their presentations with references to Laing and the masters of deviancy theory and symbolic interactionism, a staff member said, "Nobody’s ever made much of the theory part". The community is overtly egalitarian, yet staff get paid and residents pay fees; senior staff have power (including the power to dismiss other staff, volunteers and residents) and sometimes exercise it; residents’ behaviour goes uncriticised-and yet there is a constant weight of unspoken evaluation. The six residents are highly selected: they are aged between 16 and 23, are usually White, and have no evidence of organic impairment, no previous mental hospital admissions, and no close
organisation,