Overview

Dana Creighton and her mother both were affected by the same inherited cerebellar degeneration, known as ataxia--a loss of control over body movements. Both were treated by a healthcare system that failed them in different ways. Yet their experiences were disparate. Creighton eventually found the right tools to piece together meaning in her life; her mother resisted accepting her condition, in part because doctors repeatedly said nothing was wrong with her. Twenty-five years after her mother's suicide, Creighton's memoir finds striking similarities and differences in their lives and traces a lineage of family trauma. Drawing on research in neuroplasticity, medical records, personal correspondence and genealogy, the author highlights the gap between the lived experience of a debilitating ailment and the impersonal aims of clinicians. She shows how the stories parents tell themselves about living with a genetic disorder influences how they communicate it to their children.

Full Product Details

Author:   Dana Lorene Creighton
Publisher:   McFarland & Co Inc
Imprint:   McFarland & Co Inc
Dimensions:   Width: 15.20cm , Height: 1.00cm , Length: 22.90cm
Weight:   0.272kg
ISBN:  

9781476683188

ISBN 10:   1476683182
Pages:   202
Publication Date:   25 January 2021
Recommended Age:   From 18 years
Audience:   General/trade ,  General
Format:   Paperback
Publisher's Status:   Active
Availability:   Available To Order  
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Table of Contents

Table of Contents Acknowledgments Foreword by John F. Evans Preface Introduction   I. What Comes Next The Family Secret Mindfulness Small Town Hornet, Tiger Hoosier, Rocket Time Machine Just Fake It  II. Clinging to Hope Subtle Inconsistency Misdirection Conflict of Interest Within Normal Limits Wildflowers III. Wrestle with Despair Carolina on My Mind The James Joyce Pub Heads or Tails Ongoing Injury A Child’s Hope IV. A Complex Machine There’s No I in Team Fuel to the Fire March Madness Transformation So Much, So Fast The Ataxian  V. No Longer Asking Why Empowered Stop Fighting Adjusting the Focus Cheers Sheer Fantasy Seeds of Fear Frankenstein Human Spirit Write to Heal VI. Love Is the Law The Power of Your Mind Losing My Religion Bridging the Gap Connections Triple Threat Narrative Medicine Using Our Words Appendix A: Correspondence Regarding the Family Disease Appendix B: Documents Requested and Received from Indiana University School of Medicine–Indianapolis in 1999 Bibliography Index

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Author Information

Dana Lorene Creighton has an MS in exercise physiology and spent her career involved in clinical research and community health. She has contributed to various publications in scientific journals and lives in Durham, North Carolina.

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