Most of Me Read online

  MOST OF ME

  Surviving

  My Medical

  Meltdown

  Most of Me

  ROBYN MICHELE LEVY

  Copyright © 2011 by Robyn Michele Levy

  First U.S. edition 2012

  All rights reserved. No part of this book may be reproduced, stored in a retrieval system, or transmitted, in any form or by any means, without the prior written consent of the publisher, or a license from The Canadian Copyright Licensing Agency (Access Copyright). For a copyright license, visit www.accesscopyright.ca or call toll free to 1-800-893-5777.

  Greystone Books

  An imprint of D&M Publishers Inc.

  2323 Quebec Street, Suite 201

  Vancouver BC Canada V5T 4 S7

  www.greystonebooks.com

  Cataloguing data available from Library and Archives Canada

  ISBN 978-1-55365-632-6 (pbk.)

  ISBN 978-1-55365-633-3 (ebook)

  Editing by Nancy Flight

  Copyediting by Lara Kordic

  Cover design by Naomi MacDougall

  Cover photograph by Angela Wyant/Getty Images

  Illustration on ♣ by Robyn Levy

  Lyrics on ♣ are by Leonard Cohen, “So Long, Marianne,”

  Songs of Leonard Cohen, Columbia, 1967.

  Lyrics on ♣ are by Feist, “1234,” The Reminder, Cherrytree, 2007.

  Lyrics on ♣ are by Marvin Gaye, “I Heard It through the Grapevine,”

  In the Groove, Tamla, 1968.

  Distributed in the U.S. by Publishers Group West

  We gratefully acknowledge the financial support of the Canada Council for the Arts, the British Columbia Arts Council, the Province of British Columbia through the Book Publishing Tax Credit, and the Government of Canada through the Canada Book Fund for our publishing activities.

  “. . . it’s time that we began to laugh and cry

  and cry and laugh about it all again.”

  LEONARD COHEN, “So Long, Marianne”

  Songs of Leonard Cohen (debut album, 1967)

  To my parents

  And in loving memory of my auntie Glenda

  Contents

  Acknowledgments

  Prologue

  1 THE BAD OLD DAYS

  2 BREAKING NEWS IS HARD TO DO

  3 LADIES IN WANING

  4 SEX AND DOGS AND CROWD CONTROL

  5 LOST AND FOUND

  6 KISSING MY CLEAVAGE GOOD-BYE

  7 IN SEARCH OF KICK-ASS CLARITY

  8 TRAVELS WITH DOLORES

  9 THE COMEBACK MAMA

  10 SOME DON’T LIKE IT HOT

  Acknowledgments

  I AM FOREVER GRATEFUL to my husband and daughter, who together bore the burden of responsibility for keeping me sane while I wrote this book. Bergen has been my sounding board, in-house editor, computer whiz, administrative assistant, bread baker, biggest fan, and best friend—with “benefits.” Naomi has been my inspiration, memory bank, compassion guide, in-house masseuse, vegetarian cook, and loyal listener.

  I am also grateful to my mother and father for their constant love and support and to my sister and brother for their love, compassion, and friendship.

  A world of thanks to friends, family, and neighbors who played starring roles in my dramatic decline and comeback: Lisa Kelner, Ruth Tal, Bonnie Beecher, Hildi Weiman, Gloria Macarenko, Diana Kjaer-Pedersen, Brian and Gillian Campbell, Joey Mallett, Betina Albornoz, Linda Low, Teresa Goff, Terrye Kuper, Simca Kuper, Marg Meikle and Noel MacDonald, Christine Dolling and John Kilburn, Helen and Will Rosebush, Mahima Mathur and Amitava Chattopadhyay, Corry Hunter, Yvonne Gall, Sheila Peacock, Sue Black, Cheryl Dundas, Susie Seidner-Katz, Cicely Bryce, Lourdes Davenport, my e-mail update group, the men’s cooking club, and the women’s no cooking club. And to the special women no longer with us who loved life and continue to inspire me: Zoë, Chantal Jolly, and Dawn Jones.

  I would also like to thank my health care community: Adrienne Mahaffey, Dr. Elliot Mintz, Dr. Penny Smyth, Dr. A. Jon Stoessl, Dr. Allan Young, Dr. Chung, Dr. Mona Mazgani, Jessica Whidden, Dr. Hagen Kennecke, Dr. Caroline Lohrisch, Carl Petersen, Peggy Spears, and Nora Soriano.

  And finally, heartfelt gratitude to Rob Sanders for inviting me to submit a book proposal based on a collection of my quirky e-mail health updates he received from a mutual friend, and to my radiant editor, Nancy Flight, for her enthusiasm, sensitivity, and support.

  MOST OF ME

  Prologue

  IN A WAY, this is a love story. Not the classic kind, with the fair-haired delusional damsel in distress, who is rescued by the handsome narcissistic prince, and then they live happily ever after. This is a medical love story, with the dark-haired middle-aged dame in distress, who is rescued many times—first by the chivalrous neurologist, then by the petite surgeon, followed by the spiffy oncologist and, finally, by the other, younger surgeon. And although none of them live together, the dark-haired middle-aged dame survives and limps happily ever after.

  As with many medical love stories, the beginning is hard to pin down. Diseases are cunning creatures—they can incubate and mutate for years. Mine certainly did—both of them. Although I’ll never know the exact moment that Parkinson’s penetrated my brain or cancer invaded my breast, I know in my heart I was sick during the five years leading up to my diagnoses. I know, because that’s when things began to change for me and my family. That’s when the stranger surreptitiously moved into our lives. I was thirty-eight years old.

  At first, we only caught fleeting glimpses of the stranger. Her tiny intrusions into my happiness were easily missed or misconstrued. Back then, she was still unpacking her belongings and just getting to know us. She had yet to unleash the full fury of her rage and the depth of her despair. But she dropped hints: brief bouts of depression, flashes of anger, hurtful accusations, petty resentments. And it only got worse with each passing year, no matter what measures I took to evict her.

  This stranger had a stranglehold on my family, affecting each of us in different ways. I was trapped in her tyranny and riddled with guilt and self-loathing. Bergen was compassionate, accommodating, and fiercely protective of Naomi. And although Naomi tried to deflect and appease the stranger, she fell into a protracted funk—weighed down by the discord and dejection and a secret she kept locked away.

  I hate thinking about that time in my life—what was happening to me, who I was becoming. But most of all, I hate that I hurt people I love. Which is why, if dementia ever begins devouring my mind, I hope the first memories to go are of the Bad Old Days.

  1

  The Bad Old Days

  I WASN’T ALWAYS LIKE THIS: so moody, so anxious, so volatile. I used to be just a little moody, a little anxious, a little volatile. And only when I was premenstrual, overworked, or overtired. But now things are getting worse. My mood swings are growing more frequent and more severe. The flashes of anger ambush me anytime, anyplace. I’ll be at the grocery store, happily picking out vegetables; then, for no apparent reason, my blood starts to boil and my hands reach out to rip the broccoli heads right off their stalks. Or I’ll be sitting at my desk at work, and a colleague will absentmindedly leave his empty Tim Hortons coffee cup next to my phone, and suddenly I feel violated and vengeful and imagine that I am a cannibal, ripping him to shreds with my razor-sharp teeth, devouring his flesh and guts, then washing it all down with gulps of his double-double-infused blood.

  In the interests of keeping my job and shopping privileges, when I am out in public I struggle to keep it together. I put on a pseudo-happy face, complete all my assignments on time, keep my angry impulses bottled up inside, waiting until I get home to explode, eat my young, then blame my man.

  When I walk in the front door, anything can set me off: clutter in
the hallway, a stray sock on the floor, dirty dishes in the sink. Tonight it’s a basket of clean laundry. At least, that’s what it was earlier this week, when I washed and folded everything and lugged it upstairs to my eleven-year-old daughter’s bedroom. Or should I say bedlam? What a mess.

  “Naomi! Come upstairs right now!” I yell from the top floor down to the kitchen.

  I only came in here to turn down her music. If I’d seen her room like this, there’s no way I would have allowed her friend to come over. Or even allowed her to have a friend.

  “Naomi! I said right now!”

  There are clumps of clothes everywhere—all over the floor, the bed, the desk, the chair. And the laundry basket is exactly where I left it, next to the wardrobe. Nothing’s put away. Everything’s crumpled up with dirty clothes and half-eaten sandwiches and expired school memos.

  “What is it?” Naomi asks, running up the stairs.

  “Your room is a pigsty! You promised to put away your laundry! That was two days ago! Two days ago! I washed and folded everything. Now it’s filthy. What the hell is wrong with you?”

  “I’m sorry. I’ll clean it after Denise leaves,” she mutters sheepishly.

  “No! You’ll do it now!” I scream, slamming the door.

  “But she’s downstairs, waiting for me.”

  “I don’t care. You have a mess to clean up. Now!”

  Naomi’s eyes well up with tears. We hear a knock on the door.

  “What’s going on? Can I help?” Bergen steps inside, then stands between us. Father Teresa to the rescue.

  “No. Stay out of it, Bergen.”

  Nothing can extinguish my rage once it becomes inflamed. I feel the hate smothering my self-control and civility. Bergen bends down and picks up a dirty sock. I hear my shrill voice barking out orders, insults, accusations, ultimatums:

  “Don’t help her! Naomi needs consequences, not help. Why do I always have to be the bad cop? She made this mess all by herself; she can clean it up all by herself. And from now on, she can do her own laundry. Her friend can wait. Or you can drive her home. I don’t give a shit! Naomi! Clean up this room!”

  Fear floods my daughter’s eyes as she jolts into action. Her tears begin dribbling down her cheeks as she frantically gathers up her jeans and T-shirts, socks and underwear, loose papers and magic markers. I walk down the hall to my room, slam the door, and force myself to lie down. Later, way past Naomi’s bedtime, I crouch on the dark stairway outside her room and listen to her sobbing and Bergen consoling. I feel sick to my stomach. I am a cesspool of self-loathing; I am drowning in regret. I think that if only I could say the words “sorry” and “forgive me,” I could escape from the fury. But I can’t. I’m paralyzed with shame, and so I watch until it burns itself out, turns into cinders, then ashes. I’m such an ash-hole.

  In the morning I wake up with exactly what I deserve—a pounding headache and explosive diarrhea. On my way to the shower, I see Bergen and Naomi at the kitchen table. They’re both eating cereal and oranges and reading the comics. Our Yorkshire terrier, Nellie, is asleep by their feet. Only Bergen makes eye contact with me.

  “Good morning,” he says, quietly.

  His warm voice slides under my skin, inviting me toward him, toward Naomi, toward contrition and reconciliation. As if it’s still possible. But my heart is shackled with grudges and resentment, and I’m afraid of trying, of failing. But most of all, I’m afraid of facing myself and my deteriorating relationship with Naomi. So I keep my distance, exhale a feeble “hi,” and carry on getting ready for work.

  TODAY, I AM the first one at my desk. I like getting here early, before everyone else. It’s dark on these November mornings. It’s quiet. I can collect my thoughts—at least the ones I can locate. They are so scattered that searching for them is like going on a scavenger hunt. I find them wedged between my worries, hiding beneath my habits, scrawled on sticky notes. Slowly, I cobble together my day’s to-do list: book band for pretaped interview, write script for live on-air interview, edit items for radio broadcast and website, attend music committee meeting, produce guest host program, ask boss about extending my contract, possibly go to lunch-hour yoga class. That’s what I really need—deep breathing and inner peace. Something to take the edge off, to ease the stress. This new job—producer at Radio 3, Canadian Broadcasting Corporation—is killing me.

  Radio 3 is the most laid-back work environment there is at CBC. It’s like a dingy basement hangout for teenagers. The lights are dim, the dress code is casual, and the focus is music—new, independent Canadian music. Here, we play songs, talk to musicians, and cover concerts, festivals, and other music-related events. Fun stuff. It sure beats slugging it out in the pressure-cooker newsroom or on current affairs programs—chasing politicians, filing numerous stories, racing against the clock. Which is why I can’t understand what’s wrong with me, why I’m so frustrated and anxious.

  I’m starting to wonder if something is really wrong. More than just premenopause, which is what I suspect I have been going through these past few years. I’m only forty-one, but it’s possible. I have many classic symptoms: irregular periods; trouble sleeping at night; muddled thinking and problems concentrating; inexplicable aches and pains, muscle and joint stiffness, and fatigue; and terrible mood swings and bouts of depression. I’ve been taking vitamins and Chinese herbs to regulate my hormones. They seemed to help in the past. But not anymore. Now, the only thing that really helps me cope is sleep. Thank goodness I have no trouble napping in the daytime. At home, I just crawl into bed, pop in a pair of earplugs, and doze right off. At work, I sneak away to the yoga room when it’s empty, assemble a makeshift bed with yoga mats and blankets, turn off the lights, and disappear. As far as career coping mechanisms are concerned, it’s a real skill, which I’m proud of—it ranks right up there with secretly throwing tiny tantrums in the soundproof room or crying my eyes out alone in the ladies’ washroom.

  By the time my coworkers trickle in, I have written the script and left a copy of it on the host’s desk. Later, he takes me aside and says, “Thanks for the script. It’s great. Could have used it last year, when the band came in to promote their previous album. I guess you didn’t notice they have a new release?”

  “Oh, shit. I’m sorry. Do you want me to rewrite it?”

  “Nah, I already did.”

  He walks away. I am crushed by the weight of my ineptitude and slump down into my chair. I am torn between needing to scream and needing to cry. But there’s no time to do either—the boss is about to give his morning pep talk. So I take some deep breaths, swivel in my chair, and suck it up, all the while saying to myself, “Things will get better. Things will get better.”

  The next two months are a blur of work and sleep. My thoughts are becoming more agitated and jumbled; my body is starting to feel battered and shaky. Like I’m being bounced around in a rock tumbler. I’m also dropping things. Pens. Cutlery. A coffee cup. And today at work, I stumbled on the stairs. Something is definitely wrong. Or maybe I’m just going crazy. I should probably go see my doctor again. Maybe I’ll call him later.

  First, it’s time to call my dad. We speak on the phone every day. He hasn’t been feeling well for a while—he’s been slowing down, having difficulty walking, and losing his balance. And even though I know he’s been undergoing tests and seeing specialists, I am shocked when he tells me he has just been diagnosed with Parkinson’s disease. After I hang up, the thought that he’s afflicted with this devastating illness is too much for me to bear. Whatever flimsy mechanism is holding me together suddenly snaps. I take refuge in a private recording booth and cry me a river of turbulent tears.

  I HAVE A CONFESSION: I have a Cry Lady living inside me. She makes me choke up anywhere, anytime, with anyone—at the drop of a hat, the stub of a toe, the hurl of an insult, or the hint of bad news. Fortunately, I’m one of the few middle-aged women who look attractive with puffy red eyes, blotchy skin, and a snotty nose, so my public outbursts don’t
bother me. They don’t seem to bother my colleagues either—at least not the ones that scuttle away like cockroaches when my lower lip starts quivering and my eyes start leaking. This has been going on for weeks now, ever since my dad told me he has Parkinson’s.

  I’ve never cried so much in my entire life—though I have had plenty of practice. I’ve cried over broken toys, broken bones, broken hearts, broken dreams. It helps that I’ve been blessed with PMS and an artistic temperament. It’s no wonder my repertoire of tears is so extensive—ranging from infantile to crocodile and everything in between. I was built to bawl. I was built to do a multitude of other things too—laughing being one of them. But I can’t even crack a smile these days, let alone laugh. I’m afraid my joy is in jeopardy of becoming extinct. I need help. I need therapy.

  DEPRESSION DESERVES DISCRETION—that’s why there’s no sign on the clinic door. Just the address. I appreciate this gesture as I walk, unnoticed, inside. I also appreciate the steep staircase and what it offers—a hopeful climb toward a new beginning, or perhaps a hapless fall to a hopeless ending.

  I’m here tonight to meet Theresa, a cognitive behavioral therapist who specializes in treating depression. She finds me in the waiting room, leafing through a Reader’s Digest.

  “Are you Robyn?”

  I nod.

  “I’m Theresa. Come with me.”

  I follow her around the corner, along the hallway, into a tiny office. We sit down opposite each other, me on the couch, she on the swivel chair. She smiles, takes a deep breath, then exhales slowly, loudly. Without intending to, I smile, inhale deeply, then exhale slowly and loudly too.

  “Would you like to spend a few more minutes breathing together?” she asks.

  I nod and follow her lead, and as we inhale and exhale in unison, a comforting intimacy overrides the awkwardness between us. Relaxed and alert, I take in her features: oval face, straight nose, stormy blue eyes, intelligent mouth, pale complexion, shiny shoulder-length auburn hair. She looks like she sprang from the same gene pool as Jodie Foster—a half-sister perhaps, or a first cousin. She probably thinks I sprang from the gene pool of a cosmetically challenged, hirsute cavewoman—given my frizzy brown hair, dark-circled bloodshot eyes, thick bushy eyebrows, and bleached mustache sandwiched between a runny nose and chapped lips. But we keep our first impressions to ourselves. After all, it’s not the physical we’re delving into, it’s the emotional—that temperamental realm where once a week, in a tiny office, my Cry Lady confesses her life problems and emotional turmoil to a therapist with a compassionate heart, an intuitive intelligence, and an endless supply of Kleenex to mop up an endless supply of tears.