Description
Book Synopsis 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 th
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
