The Woman Who Walked into the Sea: Huntington's and the Making of a Genetic Disease

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Overview

When Phebe Hedges, a woman in East Hampton, New York, walked into the sea in 1806, she made visible the historical experience of a family affected by the dreaded disorder of movement, mind, and mood her neighbors called St.Vitus's dance. Doctors later spoke of Huntington’s chorea, and today it is known as Huntington's disease. This book is the first history of Huntington’s in America.

Starting with the life of Phebe Hedges, Alice Wexler uses Huntington’s as a lens to explore the changing meanings of heredity, disability, stigma, and medical knowledge among ordinary people as well as scientists and physicians. She addresses these themes through three overlapping stories: the lives of a nineteenth-century family once said to “belong to the disease”; the emergence of Huntington’s chorea as a clinical entity; and the early-twentieth-century transformation of this disorder into a cautionary eugenics tale. In our own era of expanding genetic technologies, this history offers insights into the social contexts of medical and scientific knowledge, as well as the legacy of eugenics in shaping both the knowledge and the lived experience of this disease.

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Editorial Reviews

Wall Street Journal
[A] detailed and evocative portrait. . . . Using a range of sources—including diaries, letters, business ledgers, whaling logs and local newspapers—Ms. Wexler re-creates a picture of a long-ago place where doctors lived next-door to their patients and where generation after generation of a community's most prominent members struggled with a crippling disease.—Amy Dockser Marcus, Wall Street Journal

— Amy Dockser Marcus

Choice

"Highly recommended."—Choice
Charles E. Rosenberg
“Wexler provides an accessible account of a disease in history. A richness of context gives her study its strength and character.”—Charles E. Rosenberg, Harvard University
Garland Allen
“This is a remarkable story of ‘St. Vitus' Dance’ (Huntington's Chorea) from many perspectives: personal, historical and social. Its meticulous history, drawn from archives and personal experience details how this late-onset hereditary disease was viewed not only medically but personally and socially by family members, neighbors and friends of afflicted individuals. This is a must read for anyone interested in the social history and policy surrounding hereditary disease.”—Garland Allen, Washington University in St. Louis
Daniel Kevles
“A brave and pioneering work.”—Daniel Kevles, author of In the Name of Eugenics: Genetics and the Uses of Human Heredity
Rosemarie Garland-Thomson
“This book is an engaging chronicle of how the lived experience of illness in a family and community transforms over centuries into an intensely monitored and medicalized hereditary disease. Wexler does what historians do best: she folds what we take now to be a straightforward phenomenon, Huntington’s disease, back into the story of its making. By doing so, she tells us something profound about how we imagine ourselves and how we are connected to one another.”—Rosemarie Garland-Thomson, author of Extraordinary Bodies: Figuring Physical Disability in American Literature and Culture
Wall Street Journal - Amy Dockser Marcus
"[A] detailed and evocative portrait. . . . Using a range of sources—including diaries, letters, business ledgers, whaling logs and local newspapers—Ms. Wexler re-creates a picture of a long-ago place where doctors lived next-door to their patients and where generation after generation of a community's most prominent members struggled with a crippling disease."—Amy Dockser Marcus, Wall Street Journal
Carole Browner
“Alice Wexler has once again accomplished the near impossible by writing a fascinating academic page-turner. Filled with truth and brilliance throughout, The Woman Who Walked into the Sea is an amazing book that leaves the reader not only better informed, but materially enriched, moved by the experience, and not wanting it to end.”—Carole Browner, University of California, Los Angeles
Choice
"Highly recommended."—Choice
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Product Details

  • ISBN-13: 9780300158618
  • Publisher: Yale University Press
  • Publication date: 1/26/2010
  • Pages: 278
  • Sales rank: 814,175
  • Product dimensions: 6.10 (w) x 9.10 (h) x 0.80 (d)

Meet the Author

Alice Wexler is a research scholar at the UCLA Center for the Study of Women and the author of Mapping Fate: A Memoir of Family, Risk, and Genetic Research. She lives in Santa Monica.

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Read an Excerpt

The Woman Who Walked into the Sea

Huntington's and the Making of a Genetic Disease
By Alice Wexler

Yale University Press

Copyright © 2008 Alice Wexler
All right reserved.

ISBN: 978-0-300-10502-5


Chapter One

The Death of Phebe Hedges

It has become our duty to publish the following melancholy circumstance, which took place at Easthampton a few weeks since:-Capt. David Hedges returned to his home in the evening, and found Mrs. Hedges ironing clothes, and apparently in health-he retired to bed and left her at that employment, but on awaking in the morning she was not to be found. After considerable search and enquiry, her footsteps were traced from the house thro' fields of grain to the shore; and there is every reason to believe she has precipitated herself into the surf which washes the south shore. Mrs. Hedges was about 40 years of age, and was much esteemed by her neighbors. This extraordinary step is attributed to her extreme dread of the disorder called St. Vitus' dance, with which she began to be affected, and which her mother now has to a great degree. From some arrangements of her clothing it appears she had for some time contemplated her melancholy end. -The Suffolk Gazette (East Hampton, New York), June 30, 1806

In the year of her birth, 1764, a revival swept the town, the people-mainlythe young people-gathering day after day in the house of the minister, the Reverend Samuel Buell, and "making the most mournful declarations of their exceeding sinfulness before God." The great English preacher George Whitefield had traveled all through New England and New York that year, stirring up revivals everywhere he went, including East Hampton, this triracial farming and fishing town founded by Puritans at the eastern tip of Long Island, a region that had been home to the native Montauks for thousands of years. As news of the Lord's work flew around the town, the spirit of prayer seemed to pour forth in a celestial torrent, according to Buell, and throngs of new converts joined the church, though it appears her parents were not among them.

And so Phebe Tillinghast began her life, with the cries of the sinners in her infant ears, the resistance of the patriot rebels at her back, and the protests of the much-diminished Montauk people rising against the danger "of being crowded out of all their ancient Inheritance, and of being rendered Vagabonds upon the Face of the earth." She was the third child of seven born to the former Phebe Mulford, who traced her ancestry to several prominent East Hampton families. Phebe Mulford's mother, Anna Chatfield Mulford (who had died five years earlier at the age of fifty), was the daughter of a justice of the peace who later became a judge of the Court of Common Pleas for Suffolk County, a position of considerable prestige. Phebe's father, John Mulford, one of the few called "Esquire" in this vicinity, descended from a long line of respected figures, including one of the town founders and several judges and "gentlemen." He had suffered a great tragedy in his youth, when his father, mother, and four siblings had died within two months' time, probably of the "sweating sickness" that desolated several families in the winter of 1726-27, leaving fifteen-year-old John and two sisters orphaned. Nonetheless, the resilient John grew up to become, at the age of twenty-nine, a town trustee-one of twelve or so leaders who oversaw all town affairs-a post to which he was reelected almost yearly for the next twenty-three years.

Showing her independent nature, the twenty-two-year-old Phebe Mulford had married, in 1761, a man "from away," a young mariner named Joseph Tillinghast from a prominent family of distillers in the town of Newport, Rhode Island. Later, Rhode Island came to figure in several legends about how St. Vitus's dance came to East Hampton. Some said the malady began as a curse on those who had persecuted Roger Williams, the founder of the Rhode Island colony. Others traced it to an unnamed Rhode Island family with five daughters who supposedly married into five East Hampton families. On the other hand, Judge Henry P. Hedges (a distant relation of Phebe Hedges), who was born in East Hampton in 1817 and wrote a history of the town, was told as a young man that the disease was introduced by "the intermarriage of an Easthampton Mulford with a Howell woman from Southampton"-a description that fit Phebe Mulford's paternal grandparents-although whether this story was true no one really knew.

East Hampton in the late eighteenth century was less a compact settlement than a collection of scattered villages and hamlets-Amagansett, Springs, and Freetown among others-counting about 1,250 white people and some 67 "Negroe" slaves who lived in the homes of the white people. There were about 34 Montauk Indian families, too. Some of these were also servants, and others lived on the outskirts of the villages, their numbers much reduced by disease and depression of the spirit since the English had begun encroaching on their lands one hundred years earlier. In the village of East Hampton-the "capital" of East Hampton town-several hundred people lived within hearing of the old church bell, the plain unpainted houses of the gentry lined up along a wide, muddy Main Street, their home lots stretching out behind the houses, for they all planted crops to feed their families, no matter what else they did as well. They had all been whalers for a few decades back in the seventeenth century, some forming small companies-a practice known as "the whale design"-to catch the whales that swam off the Atlantic coast, until the whales no longer appeared close to shore and their pursuers had to go farther afield, and whaling became a global industry. But the whale design produced a more stratified town in which some families, like that of Phebe Mulford, were distinctly wealthier than others.

Besides whaling, farming, and fishing, they raised cattle and other livestock. "The people are more properly Graziers than farmers," wrote the local historian David Gardiner, author of a series of newspaper essays in the 1840s that were later published as the Chronicles of Easthampton; "they raise large droves of cattle and sheep for sale; but very little [else] except flaxseed and cord wood." During the late eighteenth and early nineteenth centuries residents of East Hampton lived lives closely attuned to the rhythms of an animate nature and the uncertainties of divine Providence. They still valued "trade and commerce" as "in general a benefit to mankind," though the far-reaching relations with Boston, London, and the West Indies that had begun soon after the town's settlement appear to have diminished by this time. Some among them had begun to question the old Calvinist religious orthodoxies about the inherent sinfulness of men and women and the importance of deference to God's inscrutable will. These "farmers and mechanics of a bolder tone of mind" were exploring the new secular Enlightenment thought-the ideas of Thomas Paine, Voltaire, and Thomas Jefferson-what the orthodox young preacher Lyman Beecher would later call "French infidelity" and try to stamp out with his Morals Society. Like many white inhabitants of New York-the northern colony with highest percentage and greatest number of African slaves-some here remained slaveholders. At the start of the Revolution in 1776, thirty-five East Hampton households had at least one slave, including the elder Phebe's father and the local minister, who each owned three.

Young Phebe Tillinghast was twelve on that harrowing September day in 1776, just after British forces defeated Washington's armies at the Battle of Long Island and the patriot government urged white women and children and their slaves to flee. She boarded a sloop, most likely in Sag Harbor, along with her mother, father, four siblings (nine-month-old Henry had died the previous May), several loads of corn, three cows, and a horse. They traveled across Long Island Sound and up the Connecticut River to Haddam, where the family joined a community of refugees. As the British occupied all of Long Island, a third of the people of East Hampton left (apart from the young men who had already joined the patriot army)-those most unwilling to submit to British rule, those with fewer resources to protect, or simply those who had the means and mobility to leave. According to the elder Phebe, those who left valued "the peaceable Injoyment of our Liberties" over "our pleasant and Profitable Dwelling places." But dysentery, smallpox, and diphtheria raged in Connecticut in the early years of the Revolution. Joseph Tillinghast died in September 1777, leaving the younger Phebe and her siblings fatherless, and his thirty-eight-year-old widow pregnant and far from home, with five children and, soon, a new infant to feed.

They held out in Haddam for nearly three more years. But by the spring of 1780 the elder Phebe was growing desperate. She and her friend Hannah Cooper, another war widow and Long Island refugee, petitioned the patriot government for permission to go home, including in their request the obligatory self-deprecation and expressions of humility. Finding themselves now "with the Care of a number of small Children to bring up in Each of our Families," and having "exhosted al that Treasure we brought over with us for our Supporte," the two women were "Redused to the Disagreeable Nessessety of Supplicating your Honours for Relief." They urged "your Honours to take our Pitiful Cases into your Wise Consideration and give Each of us The Liberty to Transport our Selves and Small Children" back home. They wished to carry in addition "two cows three swine our household stuff and Furniture with Sum provision for the present Support of our Families."

Their petition granted within the month, the two Phebes, mother and daughter, traveled by sloop back across the Sound to Long Island, along with the other Tillinghast children, Hannah Cooper and her family, the cows, pigs, two barrels of fish, and six bushels of flour. They returned to a village with fields stripped bare and livestock much reduced by raids from both sides. Though the patriots were in the ascendant, the British fleet remained anchored in Gardiner's Bay, off the coast of East Hampton, the officers fraternizing with some of the residents at the widow Huntting's "publick house" (saloon) on Main Street. Under duress, those who had remained in East Hampton had all taken oaths of loyalty to the king, including the wily pastor, Samuel Buell, who maneuvered energetically between loyalists and patriots, so much so that some later accused him of Tory sympathies. The people here were more pragmatic than passionate. Henry Hedges defended his neighbors. "What should they do?" he asked in 1907. "Take the oath and live? Refuse, and die?"

By the time the fighting ended, in 1783, East Hampton was impoverished and devastated, with a heavy burden of taxation to boot. As Henry Hedges described it, "Agriculture had declined; commerce had been ruined; estates swept away; and when the first thrilling, triumphant transports of a free, victorious people were over, they wept at the surrounding desolation." But in truth, not everyone here was free. The state of New York did not begin gradual emancipation of slaves until 1799, and slavery was not entirely outlawed until 1827. The institution persisted in Suffolk County, and in East Hampton, long after the Revolutionary war had ended.

In 1785, in the midst of yet another of East Hampton's periodic revivals-this "outpouring of the divine spirit" as the Reverend Buell phrased it-the young Phebe Tillinghast, now twenty-one, married David Hedges, twenty-four, who also traced his ancestors to the town's English founders. David's mother, Mary Miller, was the daughter of a longtime member of the New York State Assembly who, like Phebe's grandfather, was called "Esquire." David's father, Stephen Hedges, was typical of the wealthy men in the town, the owner of extensive lands and several slaves. The Hedges family had played, and continued to play, a prominent role in the town, from the silversmith Colonel David Hedges Jr., to the shoemaking Hedges brothers, to the future judge Henry P. Hedges. Hedgeses were deacons, captains, and colonels. The men were town supervisors and whaling masters, and some of the women taught school. The Hedges men had a well-earned reputation for longevity. A number of them lived into their eighties and even nineties, a trait relevant to George Huntington's later characterization of "hereditary chorea," as we shall see.

Phebe and David Hedges set up housekeeping in a section called "the Hook" at the north end of town, where their grandchildren later lived. In 1786 their first child was born, named Stafford after Joseph's Rhode Island Tillinghast relatives. Four years later Phebe gave birth to another son, christened Stephen after his paternal grandfather. In five years' time, a daughter, Betsy, joined the family, her name more evocative of the revolutionary generation than of family genealogy. But there were no more children that we know of, and the family remained atypically small, just three surviving children born over a period of eleven years, one approximately every four or five years, as opposed to the usual two or three.

By the mid-1790s Phebe's husband had begun to hold local office, becoming part of the inner circle of men elected at the annual town meeting. Captain David Hedges, as he was called, served first as sheep and swine pounder (responsible for ensuring that sheep and swine stayed within the enclosure called a pound at night rather than roaming about town, destroying crops and fences), then as overseer of highways and tax assessor, and, most often, as a town trustee, elected at least every other year for the next decade. He may have been among those progressive local farmers drawn to Enlightenment thought-those whom Lyman Beecher called "infidels"-for his name appears often in the account books of the Clinton Academy, the center of liberal thought in East Hampton and one of the first public coeducational schools in New York. He owned no slaves.

White women too may have joined the infidels, as old patterns of deference weakened and the wartime struggles of women without men led some of them to adopt a more independent and secular stance. But in rural East Hampton the lives of most women remained more constrained than those of the men, so much so that one female visitor considered East Hampton "a frog pond, without the music of it." As she wrote a friend in 1803, "Here we are so still, so quiet, so dull, so inactive, that we have forgotten ... that there are wars, murders, and violence abroad in the earth; that there are society, and friendship, and intercourse, and social affection, and science, and pleasure, and life, and spirit, and gayety, and good-humor, alive still among the sons of earth."

When the twenty-one-year-old physician Abel Huntington-grandfather of the future George Huntington-came from his hometown of Norwich, Connecticut, to East Hampton in 1797 to take over the medical practice of the aging Dr. Ebenezer Sage, he noticed a peculiar malady that, as his grandson reported many years later, seemed "well established" in this town. Dr. Huntington had apprenticed with a noted physician, the Yale University graduate Dr. Philomen Tracy, scion of a prominent Norwich medical family, who was noted for his "patient and thorough investigation of chronic diseases" at a time when most people died of acute conditions. So it was perhaps his training with Dr. Tracy that led Abel Huntington to pay particular attention to this malady, St. Vitus's dance, which was nothing if not long and lingering.

It is worth recalling that for lay people and the learned alike in late-eighteenth-century Anglo-America, diseases were not, for the most part, distinct, well-demarcated conditions. They tended to slide into one another, protean and dynamic, "a changed state of being affecting the whole" body rather than a specific response to a defined pathogen. With the exception of a few culturally resonant disorders such as small pox, physicians thought in terms not of specific diseases but of the individual suffering body and its special characteristics-for instance, whether it was overexcited or enfeebled, and whether the humours were out of balance. They relied on a handful of therapies such as bleeding and purging, and on a variety of powerful drugs. The eighteenth-century medicine in which Abel Huntington was trained treated symptoms rather than diseases, regarding "fever" or "convulsions" or "agitation of the nerves" as disorders in themselves rather than as signs of an underlying pathology.

(Continues...)



Excerpted from The Woman Who Walked into the Sea by Alice Wexler Copyright © 2008 by Alice Wexler. Excerpted by permission.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.

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Table of Contents

Foreword Nancy S. Wexler Wexler, Nancy S.

Family/Community

1 The Death of Phebe Hedges 3

2 The Social Course of St. Vitus's Dance 22

Community/Medicine

3 Inventing Hereditary Chorea 57

4 Chorea and the Clinical Gaze 94

Medicine/Eugenics/Memory

5 The Eyes of Elizabeth B. Muncey, M.D. 125

6 Myths of Origins and Endings 151

List of Abbreviations 187

Notes 189

Index 243

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