After brain injury hits your family, getting reliable information you can relate to is essential. In addition to the information provided by hospital staff, you might find that memoirs written by survivors and family caregivers provide hope, valuable tips, ideas, and inspiring stories when you need them most.
On October 24, 2011, I’ll have the privilege of speaking on the panel “Life after Brain Injury: Havoc, Hope, and Healing” with Dixie Coskie and Larry Kerpelman, Ph.D. at the Concord (MA) Festival of Authors. We will share our experiences as family members of children and adults who had brain injuries, and as authors who hope our stories will be beneficial for other families and the public.
First, let me tell you about the two books that Dixie Coskie wrote following her thirteen year old son Paul’s severe traumatic brain injury. On September 6, 2001, Paul was hit by an SUV while riding his bike. Dixie started writing a journal to chronicle Paul’s injuries and recovery even while he was in a coma and on life support machinery. She wrote letters to Paul to describe all that happened, along with her responses, prayers, and worries. Her journal became Unthinkable: A Mother’s Tragedy, Terror, and Triumph through a Child’s Traumatic Brain Injury. Dixie and her husband, Steven, have eight children, and Dixie does a fantastic job of explaining the impact of Paul’s TBI on each child. She imparts detailed information about how to explain TBI and changes in a sibling to children of all ages.
The journal is heart wrenching in its honesty and detail. I read at top speed to follow Paul’s progress from the ICU to Franciscan Hospital for Children where progress was measured by the ability to lift his leg ¼ inch, or track a toy from left to right with his bright eyes. We readers never doubt that Paul is inside his damaged body, and that his will to live and fight is fueled by the love and fierce determination his family brings.
Dixie compares Paul’s struggles to relearn the most basic forms of movement and communication to the developmental phases of childhood. Paul returns home, and the drive to reduce or compensate for disabilities never falters. Her summary of their fight to have Paul educated at his former high school will inform other parents of children with disabilities.
Dixie opens up very personal areas, a form of courage for which caregivers will be most grateful. I found the most striking section to be her description of how sick she became from post-traumatic stress syndrome and a musculoskeletal condition. I’ve often said that post-traumatic stress responses are common, but rarely recognized or treated in caregivers. Dixie also portrays herself as a mother and her family with compassion, humor, and understanding. She doesn’t pretend to be perfect, and the access she allows us to her inner thoughts is refreshing and reassuring.
At the end of each chapter, Dixie includes the most comprehensive and specific tip sheets for that phase that I’ve ever read. Written for parents, many tips would be equally applicable for caregivers of adults. Every acute care and rehabilitation hospital would do well to hand out Unthinkable to the families of brain injury patients.
Dixie’s second book, Unthinkable: Tips for Surviving a Child’s Traumatic Brain Injury, was released in June. The book features a collection of tips from the first Unthinkable, and would make the most thoughtful gift for parents who crave hope, direction, inspiration, coaching, and a warm arm around their shoulder.
Pieces Missing…and Regained
When most people think of brain injury, they think about Joanie Kerpelman’s experience. Joanie led an optimally healthy lifestyle and exercised regularly. The cruel irony was that Joanie tripped and fell while jogging. She fell on her face, and suffered a subdural hematoma– an area of bleeding between two of the membrane layers covering the brain. The bleeding resulted in a traumatic brain injury which caused problems with pain, memory, speech, and changes in her sense of self. In his memoir, Pieces Missing: A Family’s Journey of Recovery from Traumatic Brain Injury, Larry Kerpelman chronicles Joanie’s injury, surgery, and rehabilitation with clarity, intelligence, and a husband’s loving presence.
Joanie required three emergency department visits, risky neurosurgery, and a year of rehabilitation to reach her goal of recovery. Larry’s reminiscences about their courtship, forty year marriage, and vibrant family life with two children result in the reader truly caring what happens to the Kerpelman family. The rehabilitation strategies and techniques devised by professionals and the family will give readers ideas to try. He portrays the inevitable setbacks and disappointments as realistically as the cumulative steps to recovery. Larry’s attention to the nuances of Joanie rebuilding of her confidence and sense of herself as a competent woman will resonate with many survivors and families.
Larry includes succinct explanations of terminology, and more involved discussion of brain injury issues throughout the narrative. His background as a psychologist and public policy consultant comes through in discussions about the strengths and deficiencies of the US healthcare system.
Join us at the Concord Festival of Authors
The fantastic Concord Festival of Authors features over 40 authors and 26 events from October 20-November 6, 2011. We are excited that our panel, “Life after Brain Injury: Havoc, Hope, and Healing” will take place at Emerson Hospital, Cheney Conference Room on October 24 at 7:30 pm. For complete information about the Festival, please visit the website at www.concordfestivalofauthors.com. We look forward to meeting you!