There’s no official date that marks the change in my perception. I didn’t wake up one day and suddenly see my dad in the mirror. It happened gradually, incrementally, ironically. Errant eyebrow hairs began growing haywire—like his. Long curling toes started turning knobby—like his. Familiar gestures and facial expressions would catch me by surprise. And then came the clincher. It was last year. My parents were in Vancouver for a visit, and my dad and I were having lunch together. I can’t remember what I ate, but I’ll never forget what I saw: our left hands perfectly synchronized, lying rigidly on the table, in identical frozen positions. It was as if they were communicating with each other, like telepathic twin aliens.
Since my dad had recently been diagnosed with Parkinson’s, the immobility of his left hand was understandable. But how to explain mine? It should have been obvious, but it never even crossed my mind. I simply chalked it up to subconscious mimicry and left it at that. But months later, it was clear that something was seriously wrong: my left arm wasn’t swinging; my left leg was dragging; I was dropping things and tripping; plus, I was depressed. Still, I didn’t make the connection. It was way too preposterous to believe—even when Dr. Smyth broke the news. Of course, my denial was short-lived: Parkinson’s is like an uninvited guest who moves in with you, constantly demands attention, and is impossible to ignore. So this is yet another way I resemble my dad. I hope he doesn’t mind. After all, imitation is the greatest form of flattery. And there’s no one I’d rather resemble than my kind-hearted, compassionate, generous dad. But I’ll soon find out how he really feels about sharing this disease—I’m telling him tonight.
I’D RATHER do this in person, not over the phone, but living three thousand miles away makes things complicated. I could fly to Toronto. But that would require cash and courage—two things I’m short of these days. So the phone it is.
“Are you sitting down?”
It’s the cliché question that bad news is about to be conveyed. But considering my dad’s health and state of mind, he shouldn’t be standing up for this news.
“I’m sitting down now. Just give me a minute. Is everybody OK?”
I can feel his anxiety level rising.
“Dad, I have Parkinson’s disease. I was just diagnosed the other day.”
He takes a few deep breaths and then says, “And I thought you were going to tell me something terrible. Parkinson’s isn’t so bad. We can help each other.”
His pragmatism surprises me, makes me smile. Maybe Parkinson’s isn’t as bad as I thought it was.
After a short silence, he says, “Do you want to tell Mom? I can get her to pick up the phone.”
“Can you break the news?” I ask, feeling weary and vulnerable.
“Sure, I’ll tell her.”
Now that I’ve told my dad—who is telling my mom—next on my list is my sister. Fern is three years younger than me. She’s married to Bob, and they live in the burbs with their two young kids, Kayla and Josh. We get along much better now, living three thousand miles apart, than we did as girls sharing a bedroom. Back then, we did our best to bring out the worst in each other: taunting, teasing, insulting, ignoring. We were so good at fighting, we could start a war with just a dirty look. But usually we had legitimate reasons to tattletale on each other: “She was hogging the popcorn!” “She wouldn’t let me watch my TV show!” “It was my turn to use the washroom!” “She was spying on me when I was making out with my boyfriend!”
Finding common ground wasn’t easy. We were so different: I was the tall early bloomer, full of curves and cleavage; Fern was the petite late bloomer, all skinny and flat. I was painfully shy and kept my mouth shut; Fern was extroverted and mouthed off to anyone, even the school principal. I could hold a grudge longer; she could forgive faster. I was an A student, motivated by a neurotic fear of failure; she was an average student who didn’t know the emotional price I paid for trying to be perfect.
I’ve since apologized to Fern for being such a mean big sister. And now that we’re both moms, our sisterhood has slowly blossomed. No wonder, when I break the news about having Parkinson’s, it hits her hard. Twice. Not only is she devastated to hear I have this disease, but she’s also shocked to find out that I’m even sick—have been sick for years. She had no idea. But how could she, when I haven’t revealed my vulnerability to her or complained about my mysterious symptoms and depression? Instead, I have listened patiently to hours of her personal problems over the telephone. She says had she known what I was going through, she would never have burdened me with her complaints. She would have tried to help me. She’s sorry. So am I. Living on the other side of Canada has made it easy to fool my family and myself, to hide my failing health, to pretend everything is OK. Even if it means sacrificing closeness to my sister.
My brother, Jonathan, is next. As with my sister, I’ve kept him in the dark. He is six years younger than me—an age gap that was wide enough to separate our egos and protect us from intense sibling rivalry. We still fought, but never as much as I fought with Fern or she fought with him.
I used to worry about my brother. When he was growing up, he was impulsive, unpredictable, and hard to tame—qualities that often landed him in trouble. But he was also charming, funny, and warm-hearted, and it was these qualities that eventually took center stage. The wild child was still there, waiting in the wings. All he needed was an invitation to lure him out.
One such invitation presented itself years ago, when Jonathan and I went out on a Saturday night. We ended up at a karaoke bar, and after a few drinks we struck up a conversation with the man sitting next to us, who happened to be a musicologist. And who happened to have written his master’s thesis on one of Jonathan’s all-time favorite Motown musicians: Marvin Gaye. Jonathan was ecstatic. He was also drunk. And soon he was clutching the microphone, channeling the late, great Prince of Motown, belting out “I Heard It through the Grapevine” for everyone to hear. Only, he wasn’t singing in tune or dancing in time, and the musicologist was not amused.
“Make him stop! He’s killing the song!” the musicologist shouted.
But there was no stopping Jonathan.
“‘I know that a man ain’t supposed to cry, but these tears I can’t hold inside.’”
“I’ll pay him to shut up!” he shouted, pulling twenties from his wallet.
“Encore, you say?” Jonathan roared at the audience.
The musicologist didn’t stick around for “Mercy Mercy Me.”
Today, when I tell Jonathan my news, he is caught off guard. At first he thinks I’m joking. I assure him I’m not that funny—but someone up there sure is. Talk about a good cosmic joke: me being diagnosed with Parkinson’s just months after my dad’s diagnosis. Then he says, “You’re going to beat this; don’t you worry! You’re going to get better, you’ll see!”
Jonathan subscribes to the cheerleader style of moral support.
“But it’s a degenerative disease. You don’t get better; you get worse,” I whine into the phone.
This causes him to drop his pom-poms—but only momentarily. He quickly scoops them back up and jumps into another cheer: “The doctor will give you medicine, and everything will be OK.”
I know he’s trying to be helpful; it’s just that he’s scared. He’s recently married and a new dad—at a stage in life that should be full of blessings and joy. But our dad is sick, so is our mom, and now I am too. And these boo-boos can’t be kissed better.
At the end of the day, the phone rings, and before I even pick it up I know who it is: my mom. “Daddy told me the news,” she says, and then, without missing a beat, she launches her inquisition: “Do you have a good doctor?” “What’s his name?” “Are you sure it’s Parkinson’s?” “Did you get a second opinion?” “Do you want to fly in to see Daddy’s doctor?” “When is your appointment with the specialist?” “Do you want Daddy’s doctor to call the specialist?” “How special is your specialist?” On and on she goes until I can’t take anymore. I know t
hat bombarding me with these questions is her way of coping, of feeling like she’s in control. I know she loves me and she means well and would do anything to help. But what I need from her right now is compassion, not the third degree. Hell, I’d settle for a pittance of pity—a “poor you” or “there, there” would do just fine. But that’s not what she gives me. So before she can ask me anything else, before I lose my cool and say something I might regret, I say goodnight and abruptly hang up. And then I burst into tears. Where is my compassion?
Being my mother’s daughter has never been easy. When I was young, I was too sensitive for the job. I never rolled with the punches. I couldn’t sweep things under the carpet. I tended to brood. Had I been hardwired like her, things might have been different between the two of us. We might have been closer; I might have had more fun. She certainly never allowed misery to get in the way of her having a good time. She could switch from angry mode to party mode in the blink of an eye. Watching this transformation always amazed me.
I can remember family fights erupting while we were getting ready to go to a wedding or a bar mitzvah. By the time we were all dressed and heading out the door, we were in the mood to attend a funeral, not a celebration. But the moment my mom stepped out of the car, she leapt into her favorite role: the life of the party. Her attempts to coax me onto the dance floor were futile. I preferred sulking in a chair, where I’d catch glimpses of her bright red hair and glittery gown, twirling the night away.
She always loved being the center of attention. She still does. She’s sixty-four years old and shamelessly dyes her shoulder-length hair Atomic Pink. Or High Octane Orange. Or Cherry Bomb Red. Colors that scream: Look at me! Look at me! According to my mom, the brighter, the better. The more flash, the more fun. And according to my dad, the more vibrant, the more visible. Years ago, while visiting the Vatican, they wandered off in different directions. My dad says it took him just thirty seconds to spot my mom in a crowd of fifteen thousand people. Another time, when they got separated at Disney World, he saw her riding a roller coaster five miles away.
After all these years, she’s still a party girl at heart. She’s still devouring distractions to feed her insatiable appetite for escape. And in my mind, she’s still a fiery force to be reckoned with—particularly at this vulnerable time in my life. Maybe that’s why it’s hard for me to imagine anyone or anything powerful enough to extinguish her flame. Even inoperable lung cancer. But deep down, I know that she must be suffering. And I’m sorry I’m not the kind of daughter who makes motherhood easy for her, particularly at this vulnerable time in her life when no number of Hollywood movies or shopping sprees or travel adventures can drown out the sound of her ticking time bomb or hide the unsettling truth that her family is slowly self-destructing.
ANOTHER MORNING, another breakfast with the Lucky Ones. The way I’m feeling, I could easily squeeze in between Lessing and Lewington:
Robyn Michele Levy passed away peacefully into her bowl of organic cornflakes. She leaves behind a ripe kiwi, a fistful of pills, her teenage daughter, and her devoted husband. In lieu of flowers, donations to her MasterCard account would be appreciated.
NO WTHAT I’VE told my family, the fun of telling my friends begins. When I was in grade school, I always liked show and tell. There was something tantalizingly voyeuristic about inspecting other people’s stuff: their treasured object, coveted collection, peculiar pet, extraordinary scar. Occasionally, a kid would even bring in a person and beam, “My dad, the dentist” or “My mom, the pastry chef.” While we appreciated these guests and their gifts of toothbrushes and puff pastry, we secretly wished a student would bring in someone scary, someone sinister—“Meet my uncle, the axe murderer”—if only to see what kind of souvenirs he would hand out.
Parkinson’s disease has rekindled my interest in playing show and tell with friends. And based on the “oohs” and “aahs” I’m getting, it’s clear that we adults (at least the ones I hang out with) haven’t outgrown this voyeuristic childhood activity. Especially when it appeals to our fascination with the grotesque—which I fear I am becoming.
“Watch this,” I say, holding up my hands in front of my face, swiveling them side to side, as if I’m screwing in a pair of light bulbs. At first both hands are synchronized, but suddenly my left hand freezes in place, the built-up tension causing it to tremor and jolt. My right hand carries on, oblivious and obliging, until I will it to stop.
“I have Parkinson’s disease. So far, only the left side of my body is affected.”
At this point I ask, “Would you like me to show you more?”
And since no one has turned down this offer, I roll my left shoulder to demonstrate its clunky cogwheel motion, then I rotate my left foot in circles until it seizes up. My repertoire of symptoms doesn’t end here—my voice has softened, my left arm doesn’t swing when I walk and tremors when I extend it, my entire body is rigid and stiff, and my movements are slow and strained—but since I don’t want to appear boastful, I keep the show and tell short and sweet.
Once my friends overcome the initial shock, I explain what I know so far about this disease. Fifty percent or more of Parkinson’s patients suffer from clinical depression. There is nothing wrong with my muscles—the problem is in my brain, specifically a depletion of dopamine. There are drugs to help ease some of my physical symptoms, but for now I’m focusing on dealing with the emotional. I sheepishly admit I’m on antidepressants, and much to my surprise one friend reveals she is taking them too. Then another friend mentions that several of her close pals are also on them. It’s the same story with other friends, until pretty soon I realize that I’m just one glum soul among many. I find this both comforting and disconcerting—and I burst into ambivalent tears.
3
Ladies in Waning
THESE DAYS, everyone is worried about me, even strangers—particularly impatient strangers at the grocery store, waiting in line behind me at the express checkout counter. Sometimes they are so worried that their eyeballs roll right out of their sockets as I slowly fumble through my purse to pay the clerk.
I’m worried too. Unsettling thoughts of drooling, diapers, and wheelchairs loom large. And so does death (hopefully before diapers). But these fears seem rather futile to fret about now, considering I’m just in the early stage of Parkinson’s. This means I can focus my anxiety on concerns I face every day. For starters, there is my deteriorating walk, which I am very self-conscious about—particularly at the dog park. Let off leash, Nellie runs like the wind, as far away from me as possible. Then she conducts “canine crop circle” research, eventually marking the perfect celestial spot with a down-to-earth turd. Which I must find and dispose of, in front of everyone. I lumber awkwardly across the grass, dodging dogs chasing tennis balls and squeaky toys, my left leg dragging behind, my crooked left arm frozen at my side, torso tilting too far forward, right arm swinging back and forth, back and forth, like a doggie poop divining rod, searching . . . until I strike gold.
My many other concerns are not as public. I’m having difficulty flossing my teeth, folding the laundry, chopping vegetables, vacuuming the floors, putting on my shoes, doing up zippers, typing on the keyboard. Little things only Bergen and Naomi notice when we’re at home. And while they don’t say it out loud, I know they both worry about me a lot. Most of the time I appreciate all this concern from everybody. But sometimes I find it difficult being the center of apprehension and long to escape the scrutiny.
That’s where Nellie comes in handy. As far as I can tell, my dog hasn’t the foggiest idea that I have a degenerative brain disease—or that I have a brain to degenerate. In her eyes, I’m just this omnipresent creature she adores, who fills her food bowl, takes her for walks, picks up her poop, scratches her belly, and reluctantly removes sticks protruding from her bum—the very sticks I am always telling her not to eat. And while she isn’t the brightest dog in town, her ignorance often brings me bliss—rare moments when I forget that I have Parkinson’s and
that people worry about me.
WARNING: Habits may be habit forming. Habits may also be hilarious. Sometimes they can be both. Such as the habit I have of marching around inside my house, like a soldier in basic training. Every day. Rain or shine. Hup, two, three, four. Back and forth between the kitchen and the living room—with gusto. According to my physiotherapist, this marching drill should help my rigid left arm swing back and forth and my limping left leg lift up and down, in smooth rhythmic motions that would make a sergeant major proud. That’s what it should do. But I march to the beat of a disabled drummer. And no matter how hard I try, I lurch to the right like a spastic soldier—perky but jerky. I’d make a sergeant major cry.
The first time Naomi saw me marching, she laughed and then squealed, “I arrived just in time for the show!” I was flattered—teenagers are notoriously hard to impress.
“Welcome to Cirque d’Oy Vey,” I said, putting more schlep into my step.
Luckily for her, I was at the beginning of my workout routine, cobbled together from physio, Pilates, and yoga exercises I’d learned over the years. There was plenty still to come. Leg kicks and figure eights. Arm flexing. Knee tapping. Stretches and lunges. Postural poses. And the showstopper: tripping over Nellie while walking backwards.
Naomi was entertained. She even got into the act by coaxing my left arm into positions it can no longer find on its own. She still occasionally does this, without hesitation or awkwardness and without the slightest indication that I embarrass her—even in front of her friends. I find this remarkable because I consider my body an embarrassment of glitches, which I’d do anything to fix.
Most of Me Page 5