Left Neglected (29 page)

AUTHOR’S   NOTE

Left Neglect, also known as unilateral neglect and hemispatial neglect, is a real neurological syndrome that occurs due to damage to the right hemisphere of the brain, such as might follow a right-hemisphere stroke, hemorrhage, or traumatic brain injury. While the average man or woman has most likely never heard of Left Neglect, patients with this condition are commonly seen by health care professionals in rehabilitation hospitals. Patients with Left Neglect are not blind, but rather their brains ignore information on the left side of the world, often including the left side of their own bodies. The people I came to know with Left Neglect are at varying stages of recovery and have adopted many standard and creative strategies for adapting to life without a conscious awareness of the left. They all continue to hope for further recovery. As of the writing of this story, the neurological processes that underlie Left Neglect are not well understood.

New England Handicapped Sports Association (NEHSA) is a real organization headquartered at Mount Sunapee in Newbury, New Hampshire (and not the fictional town of Cortland, Vermont). Their mission is to “bear witness to the triumph of the human spirit by helping people with disabilities and their families enrich their lives through adaptive sports, recreation, and social activities.” They serve people living with many kinds of disabilities, including amputations, autism, Down syndrome, traumatic brain injury (TBI), spina bifida, muscular dystrophy, multiple sclerosis, balance problems, and stroke.

For more information about this amazing organization, go to
www.nehsa.org
or email [email protected].

ACKNOWLEDGMENTS

Thanks first go to the many people living with Left Neglect who generously shared their experiences and stories with me, giving me a real and human insight into this condition that simply can’t be found in textbooks.

Thank you, Annie Eldridge, Lynn Duke, Mike and Sue Mccormick, Lisa Nelson, Brad and Mary Towse, and Bruce and Aimy Wilbur.

A special thank-you to Deborah feinstein, who passed away while I was writing this story, and to her family for inviting me into their lives at such a personal and uncertain time. Thank you, Dr. Ali Atri for introducing me to Deborah and her family, for taking the time to bring me in, and for trusting that my quest for knowledge would be respectful.

A special thank-you also to my friend Julia Fox Garrison (author of
Don’t Leave Me This Way
). You are truly an inspiration.

Thank you to the many health care professionals who took the time to meet with me or talk on the phone, who helped me to better understand the clinical presentation of symptoms, rehabilitation, accommodation, and recovery.

Thank you, Kristin Siminsky (physical therapist), Kimberly Wiggins (neurology RN), Patty Kelly (occupational therapist), Jim Smith (assistant professor of physical therapy at Utica College), tom van vleet, Phd (research neuropsychologist at the University of California, berkeley), and Michael Paul Mason (author of
Head Cases: Stories of Brain Injury and Its Aftermath
).

Thank you to everyone at Spaulding Rehabilitation hospital in Boston: Dr. Ron Hirschberg (physiatrist), Lynne brady Wagner (director, Stroke Program), becky Ashe (occupational therapist), Melissa DeLuke (occupational therapist), Paul Petrone (occupational therapy practice leader, stroke Program), Dr. Randie Black-Schaffer (medical director, Stroke Program), Varsha Desai (occupational therapist), Jena Casbon (speech-language pathologist), and Joe Degutis, PhD (research scientist).

Thank you to everyone at the Rehabilitation Hospital of the Cape & Islands: MaryAnn Tryon (RN), Carol Sim (RN, CEO), Stephanie Nadolny (VP of clinical services and recreational therapist), Jan Sullivan (inpatient speech therapist), Scott Abramson, MD (physiatrist), Allison Dickson (inpatient rehab aide), Deb Detwiler (inpatient rehab aide), Colleen Mccauley (inpatient physical therapist), David Lowell, MD (medical director, neurologist), Dawn Lucier (senior physical therapist, neuro specialty), Sue Ehrenthal, MD (physiatrist), Jay Rosenfeld, MD (physiatrist), Heather Ward (outpatient physical therapist), and Donna Erdman (outpatient occupational therapist).

Thank you to Sarah Bua for giving me insight into life at Harvard Business School.

Thank you to Susan Levine, vice president at Bain Capital, and Stephanie Stamatos, former senior vice president of human resources at Silver Lake, for helping me better understand Sarah’s professional life and the juggle of family and career.

Thank you to Jill Malinowski and Amanda Julin for educating me about Attention Deficit Hyperactivity Disorder.

Thank you to Tom Kersey, executive director of New England Handicapped Sports Association (NEHSA), for showing me the miracle of NEHSA and how it would help Sarah.

Thank you to Louise Burke, Anthony Ziccardi, Kathy Sagan, and Vicky Bijur for believing in this story before even reading a word of it, and thank you again to Kathy and Vicky for making this story better through your editorial feedback and guidance.

Thank you to my beloved early readers who read each chapter as I wrote it, encouraging me along from the first words: Anne Carey, Laurel Daly, Kim Howland, Sarah hutto, Mary MacGregor, Rose O’donnell, and Christopher Seufert.

Thank you to my village of family and friends who helped me with child care and finding the time and space to write this story, especially Sarah Hutto, Sue Linnell, Heidi Wright, Monica Lussier, Danyel Matteson, Marilyn and Gary Seufert, my parents, and my husband.

Thank you to Chris, Alena, and Ethan. Your love makes this all possible.