Most of Me
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
V
5
T
4
S
7
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
â£
by Robyn Levy
Lyrics on
â£
are by Leonard Cohen, “So Long, Marianne,”
Songs of Leonard Cohen,
Columbia, 1967.
Lyrics on
â£
are by Feist, “1234,”
The Reminder,
Cherrytree, 2007.
Lyrics on
â£
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
4 SEX AND DOGS AND CROWD CONTROL
6 KISSING MY CLEAVAGE GOOD-BYE
7 IN SEARCH OF KICK-ASS CLARITY
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 friendâwith “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
I
N 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 timesâfirst 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 creaturesâthey can incubate and mutate for years. Mine certainly didâboth 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 funkâweighed down by the discord and dejection and a secret she kept locked away.
I hate thinking about that time in my lifeâwhat 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.
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 everywhereâall 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 deserveâa 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 thoughtsâat 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 needâdeep breathing and inner peace. Something to take the edge off, to ease the stress. This new jobâproducer at Radio 3, Canadian Broadcasting Corporationâis killing me.
