Main description:

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 with ataxia were disparate. Where Creighton eventually found the right tools to piece together meaning and purpose in her life, her mother resisted accepting the reality of her condition, in part because doctors repeatedly said nothing was wrong with her. Twenty-five years after her mother's suicide, Crieghton'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, her narrative highlights the gap between the lived experience of debilitating ailment and the impersonal aims of clinicians, and shows how the stories parents tell themselves about living with a genetic disorder influences how they communicate it to their children.

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