A Family Disease

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.

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.

Dana Lorene Creighton
Foreword by John F. Evans, MAT, MA, Ed.D
Format: softcover (6 x 9)
Pages: 202
Bibliographic Info: 34 photos, index
Copyright Date: 2021
pISBN: 978-1-4766-8318-8
eISBN: 978-1-4766-4195-9
Imprint: Toplight

Acknowledgments v
Foreword by John F. Evans 1
Preface 5
Introduction 7
I. What Comes Next 11
The Family Secret 11
Mindfulness 15
Small Town 19
Hornet, Tiger 25
Hoosier, Rocket 30
Time Machine 32
Just Fake It 36
II. Clinging to Hope 40
Subtle Inconsistency 40
Misdirection 42
Conflict of Interest 47
Within Normal Limits 50
Wildflowers 53
III. Wrestle with Despair 59
Carolina on My Mind 59
The James Joyce Pub 63
Heads or Tails 67
Ongoing Injury 69
A Child’s Hope 74
IV. A Complex Machine 79
There’s No I in Team 79
Fuel to the Fire 81
March Madness 86
Transformation 90
So Much, So Fast 96
The Ataxian 101
V. No Longer Asking Why 108
Empowered 108
Stop Fighting 112
Adjusting the Focus 116
Cheers 120
Sheer Fantasy 122
Seeds of Fear 125
Frankenstein 130
Human Spirit 133
Write to Heal 139
VI. Love Is the Law 147
The Power of Your Mind 147
Losing My Religion 150
Bridging the Gap 153
Connections 157
Triple Threat 162
Narrative Medicine 166
Using Our Words 170
Appendix A: Correspondence Regarding
the Family Disease 175
Appendix B: Documents Requested and Received from Indiana University
School of Medicine–Indianapolis
in 1999 181
Bibliography 191
Index 193