By Phillip L. Pearl, M.D.
In a word, splendid.
The student of epilepsy (aren’t we all?) must read Simon Shorvon’s epic, The Idea of Epilepsy: A Medical and Social History of Epilepsy in the Modern Era (1860 – 2020).1
Newswise — In a detailed, comprehensive, and scholarly fashion, the writer takes us on a journey, using the metaphor of “The Voyage of the Good Ship Epilepsy,” that is astoundingly clear, erudite, and fascinating. Many of us will recognize Oswei Temkin’s treatise, The Falling Sickness: A History of Epilepsy from the Greeks to the Beginning of Modern Neurology, first published in 1945 with a second edition in 1971, as the leading authoritative text on the subject. Shorvon takes us from there through the modern age and stops at nothing, covering the science (basic and clinical), classification and terminology, diagnostics, medical and surgical treatments, social aspects, legislation, health care delivery, and even the role of epilepsy in literature, the arts, and film. Moreover, this is approached from multiple perspectives: science, medicine, society, and—with great sensitivity and empathy—the person with epilepsy. He also covers some of the great personalities in the epilepsy field, as well as the organizations that have represented both the epilepsy professional and patient/family communities.
The writing is superlative, in concinnity, vocabulary, and flow. This is no soporific history tome. The words jump off the page, with one segue after another that thrusts the reader through its entirety. Simply put, I could not put it down.
Following a fascinating prologue that tantalizingly introduces the epilogue as delving into the question of whether epilepsy should even continue to exist, at least as a term much less concept, the author divides the voyage into four eras. Altogether covering the last sesquicentennial of epilepsy’s history, the journey is partitioned into five sections:
- 1860 – 1914: The birth of modern epilepsy
- 1914 – 1945: Epilepsy in the age of catastrophe
- 1945 – 1970: Epilepsy and the new world order
- 1970 – 1995: Epilepsy in a globalized world
- 1995 – 2020: The epilepsy floods are too recent
These time-period denotations refer to world events, e.g. the world wars of the 20th century, emphasizing even further how the history of epilepsy is intertwined with society at large. And this path winds through so many changes, from the early concepts of epilepsy being a curse to hide, to clustering epilepsy patients into asylums and then colonies, to the crimes of eugenics, to the profound effects of electroencephalography in terms of putting epilepsy on a sturdy scientific footing, followed by discoveries in neurochemistry, pharmacology, and molecular genetics carrying us to the present day.
The reader will appreciate the profound influences during the latter half of the 19th century by John Russell Reynolds, John Hughlings Jackson (with the neuronal origin of epilepsy and beginning of localization), and William Gowers. In contrast, the influence of psychiatry on epilepsy that held sway during that era, with the view of epilepsy as a mental disorder and with theories of degeneration and criminality, is well castigated.
The dominant epileptologist of the first half of the 20th century is unequivocally anointed as William G. Lennox, who singlehandedly assured the survival of the International League Against Epilepsy (ILAE) and petitioned tirelessly for attention to the plight of the patient with epilepsy. Shorvon, however, has a keen sense for irony. For example, he describes that it remains unclear whether Lennox’s transition from missionary medicine to epilepsy was stimulated by epilepsy in a friend’s daughter or in his own daughter, Margaret, who ultimately co-authored his own 1960 treatise.2 As Shorvon masterfully points out, perhaps there is a pinch of hypocrisy, in that Lennox wrote of the “canker of secrecy” as being the “most serious and implacable handicap” of the condition, yet he never publicly admitted his daughter’s diagnosis.
As history becomes closer to home, it hits even harder. Descriptions of two personal favorite former mentors from a distance, Fritz Dreifuss and Kiffin Penry, were spellbinding and uplifting. The history of the ILAE, drugs from bromide to modern therapeutics, and epilepsy surgery are covered with illuminating stories that never become dry. More sobering are personalized critiques of the influence of many external factors, with pointed reality checks related to the pharmaceutical industry, frequent twiddling of classification schemes, and even internal squabbling within and between the ILAE and the International Bureau for Epilepsy (IBE).
Regarding the continual reclassifications of epilepsy, the author opines that “all have been gardener’s schemes” (with reference to Hughlings Jackson himself dividing such schemes between that of the simplistic gardener versus the proper botanist), “and whether there is really any advantage to the schemes of 2020 over those of 1860 is highly arguable.” And there is a stark degree of (paradoxically refreshing) skepticism that the prodigious resources devoted to pharmacogenomics, epilepsy genetics, and surgical advances have significantly advanced the field.
In contrast, the author concludes that the openness in society that evolved during the past half-century, with more public acceptance and less discrimination, has been “the most significant and beneficial developments in the lives of people with epilepsy and in many ways of greater importance than any scientific or medical advances.” (italics from the text).
As a near footnote (Shorvon’s many footnotes are fascinating and enriching; I could not skip any), the author suggests in the end that the term epilepsy should be abolished altogether. In a nod to how society’s view has been the most important change for the person with epilepsy, the intent here is to rid us of the term in order to prevent the “prejudicial and personal consequences that being epileptic can entail.”
The counterargument, however, is acknowledged: The term does indicate an underlying liability to have seizures, a valid concept with utility. In my view, we must all acknowledge that epilepsy is at least an idea, a concept, with many faces and sides, which is why the title of this book is so appealing in the first place.
This reviewer’s concern is that shedding the term would result in further loss of historical context, a context that is profoundly rich, as is well demonstrated in this marvelous book. In my view, retaining the term is tantamount to studying its history, which is explained best in the book when Shorvon quotes the late doctor-novelist Michael Crichton, whose book Timeline includes the quote, “If you didn’t know history, you didn’t know anything. You were a leaf that didn’t know it was part of a tree.”3
Just splendid.
Bibliography
- Shorvon, Simon D. The Idea of Epilepsy: A Medical and Social History of Epilepsy in the Modern Era (1860 – 2020), Cambridge University Press 2023, 750 pp.
- Lennox, William Gordon and Lennox, Margaret A. Epilepsy and Related Disorders, Little, Brown and Company 1960, Boston, volumes 1 & 2, 1168 pp.
- Crichton, Michael. Timeline, Alfred A. Knopf Pub., New York 1999, 464 pp.
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Founded in 1909, the International League Against Epilepsy (ILAE) is a global organization with more than 125 national chapters.
Through promoting research, education and training to improve the diagnosis, treatment and prevention of the disease, ILAE is working toward a world where no person’s life is limited by epilepsy.
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