by Lisa Genova
“To a full life,” he says.
I smile, loving him for changing with me, for going where my Neglect has taken us, for getting the new me. Because while I still hope for a full recovery, I’ve learned that my life can be fully lived with less.
I look left again and find my hand, clad in beautiful symbols of me and Bob, our children, my friend, and now my mother. With every ounce of focus I can gather, I lift my wineglass high with my left hand.
“To a full life,” I say.
We clink glasses and drink.
I’m riding the quad chairlift to the summit of Mount Cortland. My mother is sitting next to me, to my right, her favorite place to position herself so I can be sure to see her. She’s wearing a red knit shawl over a white sweater, black elastic-waist pants, black boots, and a huge Victorian tea hat covered with red flowers.
“Mom, you’re not dressed appropriately.”
“I’m not?”
“No. And you don’t have skis or a snowboard. How are you going to get down the mountain?”
“I’m only here to see the view.”
“Oh.”
“And to spend time with you.”
“You should learn to snowboard.”
“Oh no, it’s too late for me to be doing that kind of thing.”
“No, it’s not.”
“It is. But I’ve enjoyed this ride with you.”
I look up and see that we’re approaching the end of the lift. I raise the bar over our heads, turn my board, and edge forward on the seat.
“Remember to look left,” says my mother.
I turn my head to the left and gasp. Nate and my father are sitting next to me.
“Oh my God. Where did you come from?” I ask.
“We’ve been here the whole time,” says my father, smiling at me.
My father and Nate are both wearing red ski jackets and black pants, but they don’t have skis or snowboards either.
We reach the top, and I slide down the ramp. Nate, my father, and my mother walk ahead and board another lift without me. I watch their chair ascend and dissolve into sky.
“Hey.”
I turn my head to the left. It’s Bob.
“You’re all here,” I say.
Linus is sitting in a child carrier strapped to Bob’s back, Lucy is standing next to Bob on her skis, and Charlie is ahead of them on his board.
“Of course. We’re waiting for you.”
I look ahead at the untouched trail before us, at the snow-covered valley below, at the Green Mountains in the distance, enjoying the feeling of the warm morning sun against my cold cheeks. In the stillness of the summit, I hear nothing but the sound of my own breath.
“Let’s go,” I say.
I turn the toe of my board and lean downhill.
Slide, turn, slide.
I am peaceful.
Slide, turn, slide.
I am whole.
Slide, turn, slide.
Hush.
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 MacGr
egor, 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.