The Insider's Perspective

Abstract

I have attempted to keep very close track of books written either by aphasic persons or by people close to them, usually a spouse, ever since my stroke 13 years ago, which I eventually reported in a book (Moss, 1972). In preparation for a revised copy of that book, I communicated with 26 psychologists and psychiatrists in the United States and Eastern and Western Europe, including an exchange of letters with the then Professor A. R. Luria, dean of Soviet neuropsychologists, regarding books by or books about aphasic persons. As far as I can determine, 14 of these have been published (Buck, 1968; Dahlberg and Jaffe, 1977; Farrell, 1969; Griffith, 1970; Hodgins, 1964; Knox, 1971; Luria, 1972; McBride, 1969; Moss, 1972; Ritchie, 1966; Van Rosen, 1963; Whitehouse, 1968; Wint, 1965; and Wulf, 1973). All were published after 1960, and all, fortunately, were written or translated into English. However, many books are already out of print. Each book is written from a unique perspective, both because strokes hit widely diverse parts of the brain and because of the uncommon learning experiences of each person. The most exceptional are written by aphasic persons, people who have difficulty in using standard methods of communication because of their stroke. Of the approximately 300,000 people struck down by strokes in the United States each year, about half are afflicted with a language disturbance. This cohort presents a sizeable sample for studying the complex process of human communication and the most remarkable biologic phenomenon, human memory. All the books detail the alarming experience of what it is like to go through a stroke and the long, frustrating efforts to obtain some semblance of rehabilitation. The stroke itself is not that bad, at least for the victim. The temporal sequence is characterized by an abrupt onset and rapid evolution, and the symptoms usually reach a peak of severity in seconds or minutes. It is largely painless, brains are numb, they know only what the body experiences. The patient may react with momentary anxiety, but the initial phase almost always is characterized by varying degrees of clouding of consciousness with confusion, disorientation, and the occurrence of altered forms of symbolic expression. A severe stroke may result in loss of consciousness, complete paralysis, global aphasia, and, in one out of ten cases, death. It really is not a bad way to die. But, what follows if the patient lives, and the great majority of them do, is not at all a pleasant story.