Left Neglected

Chapter 39





We sold our house in Welmont and moved to Cortland in June, after Charlie and Lucy finished the school year. Bob took the summer off, Charlie and Lucy spent mornings at the YMCA camp, all three kids played in the yard or swam in Lake Willoughby most afternoons, and I learned to kayak in the same lake through NEHSA’s summer recreation program. Even though my mother had always planned to spend the summer back at her own house on Cape Cod, it still felt strange to be here without her. I kept expecting to see her walk through the front door, for her to bring me the latest People, to hear the sound of her laugh. I still do. I had imagined making at least a couple of road trips with Bob and the kids to visit her over the summer. I’d imagined spending time with her on the beach, eating fresh tomatoes from her garden, meeting her Red Hat friends. And when we weren’t together with her on the Cape, I’d imagined that we’d Skype.

It’s now the first week of November, past peak foliage and mountain biking season and at least a month before there’s enough snow on the mountain. It’s a sleepy month in a town that’s drowsy all year, but I don’t mind. Bob and I are seated at our favorite table by the fireplace at Cesca’s. We didn’t need reservations, we didn’t have any trouble finding a parking space right in front of the restaurant, and we didn’t have to wait for our favorite table. We’re the only two people here, partly because it’s so early in the evening, but the place won’t fill up at any point tonight.

Bob slides a small white box across the table.

“What’s this?” I ask, not expecting a gift for this occasion.

“Open it,” he says.

We’re here to celebrate the anniversary of the day I survived my car crash. We’ve consciously chosen to make this a day of celebration and not a day of regretful What-Ifs—What if I hadn’t won the shoot? What if it hadn’t been raining? What if I hadn’t tried to use my phone? What if I’d looked up sooner? What if I hadn’t banged my head? We’re here to celebrate the life we have and not bemoan the life we’ve lost. But before I open Bob’s gift, I can’t help but reflect on both.

I miss my old job at Berkley. I miss Richard and Jessica, the brilliant consultants, the feeling of conquering a seemingly impossible day, staffing interesting projects, recruiting season, managing career development, and being really good at it all. But I don’t miss my old commute, the travel, the hours, and the stress that accompanied all of those.

I love my new job at NEHSA. I love Mike and the volunteer staff, a diverse group of people with the most generous hearts on the planet. I love the hours. I’m typically there from eight to noon, Monday through Friday, and usually put in five additional hours a week from home, but some days I work entirely from my living room couch. I love the work itself. It feels challenging and important. And I’m really good at it. I’ve been working there for two months now, and I haven’t had to cry yet. I don’t suspect that I will.

I don’t miss my dry-clean-only, button-down shirts and suits. NEHSA is strictly casual dress. I do miss my high heel shoes.

I miss my old paycheck and the sense of pride, power, and worth that it gave me. I make a lot less money now. A lot less. But what I’ve lost in dollars, I’ve gained in time. I have time in the afternoons now to help Charlie and Lucy with their homework, to play Wii with them, to watch Charlie’s soccer games, to take a nap with Linus. I can’t wait to spend afternoons snowboarding. I have time to paint a portrait of Lucy (my only child who will sit still long enough) or the apples we picked at the local orchard. I have time to read novels, to meditate, to watch the deer walk across the backyard, to have dinner every night with my family. Less money, more time. So far, the trade-off has been worth every penny.

Neither of us misses Bob’s old job. He found a position at Verde Inc. working to help an international list of clients develop economically favorable plans for converting to renewable energy sources. The company is young, smart, growing, and passionate about what they do, and Bob loves it. It’s located in Montpelier, about fifty miles from our house in Cortland, but it’s all highway, and there’s never any traffic, so it only takes him forty-five minutes, which is the same amount of time it used to take us to commute from Welmont to Boston (if the weather was good, if there weren’t any accidents, and if the Red Sox weren’t in town). Everyone there has been understanding of his need to leave the office early to help with me and the kids. He’s usually home by 4:00.

The elementary school here is wonderful. The class sizes are half what they were in Welmont, and the teachers in the special education program are working really well with Charlie. He can’t wait to start snowboarding with the school’s team this winter. Lucy likes her new teacher and loves Hannah, her new best friend. And Linus has adjusted without a hiccup to his new day care. Bob drives him there every morning before work, and either Chris or Kim from NEHSA brings him home for me at 2:00.

I miss Heidi. She promises to bring her whole family to Cortland over February vacation for a week of skiing and snowboarding.

I miss Starbucks. B&C’s is still closed. At least we have the Impressa.

I miss being able to do simple things easily, like reading, typing, shaving, getting dressed, cutting paper with scissors, putting a pillowcase on a pillow, fixing a shirt that is inside-out.

I miss driving and the independence that goes with it. Bob drives me to Mount Cortland in the mornings, and Mike or someone from NEHSA drives me home, but I miss being able to come and go without being someone else’s passenger.

A small percentage of people with Left Neglect do eventually recover enough to drive safely. Still unwavering in his encouragement, last Monday, before work, Bob pulled into the empty church parking lot and told me to give it a try. After switching places, I buckled my seat belt (something I never could’ve done six months ago), shifted from Park to Drive, and eased my right foot from the brake to the gas. We only traveled a few feet before Bob yelled, Stop! I hit the brake, panicked but not understanding why. Look LEFT, he said. At first, I didn’t notice anything at all, and then there it was—the driver’s side door, wide open. So I guess I’m still not ready to drive. Someday.

I miss walking. I’m still cane, step, and dragging with my granny cane, but with much more confidence and a lot less drag, and I hope to progress to a regular cane soon. Hope. Progress. There is still both of those.

But of everything that I miss, I miss my mother most of all. What if I hadn’t won the shoot? What if I hadn’t banged my head? What if I hadn’t needed her help? What if she hadn’t offered it to me? I’m so grateful that I had the chance to know and love her before she died.

I lift the lid off the unwrapped box. My heart swells with emotion, and tears spill down my smiling cheeks.

“Oh, Bob, it’s beautiful.”

“Here, let me attach it for you.”

He reaches across the table and holds my left hand in his.

“There,” he says.

I waggle my shoulder and hear the jingle of my charm bracelet at my left wrist. Look left, scan left, go left.

I find my diamond ring and wedding band. Me and Bob.

Look left, scan left, go left.

I find my pink, plastic watch. My good friend, Heidi.

Look left, scan left, go left.

I find my silver charm bracelet and the three dime-sized discs. Charlie, Lucy, and Linus.

Look left, scan left, go left.

I see my gift from Bob. My new charm. A silver hat adorned with a single, bezel-set ruby. My mother.

“Thank you, honey. I love it.”

Our waitress brings us a bottle of Shiraz and asks what we’d like for dinner. We both order Caesar salads and the pumpkin ravioli. Bob pours the wine and lifts his glass.

“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 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.