Most of Me (7 page)

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

T
HESE 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.

Unfortunately, fixing things isn't my forte; I'm better at breaking things. Casualties include the garburator, the clothes dryer, the dishwasher, and, of course, the computer. I'm lucky that Bergen can fix almost anything—he's a handyman with a workshop full of tools and spare parts and an eclectic collection of you-never-know-when-this-might-come-in-handy junk. Which somehow always comes in handy for something, somewhere, sometime.

I'm secretly hoping someday he'll emerge from his workshop with “The Lazarus”—a custom-built contraption that resurrects dead dopamine brain cells and cures Parkinson's. Of course, I'll bravely volunteer to be the first guinea pig to test it out. And I'll try not to flinch, even if he attaches a modified Ham radio with guitar-pick electrodes to my head. I realize there's bound to be some kinks to work out in the beginning, so I'll brace myself for possible side effects—nausea, chills, headache, double vision, multiple orgasms—I can handle almost anything if it leads to a fix.

Meanwhile, I'm collecting facts—searching the web, borrowing library books, learning the lingo. Apparently, so is Naomi. When I go to tuck her into bed tonight, I have to choke back my tears. Probably every kid in the world is reading the latest Harry Potter book, but not my daughter. She is flipping through the pages of an illustrated neurology textbook.

“Are you sure you want to read that stuff before bed?” I ask.

“Yeah. Look at these brains. This one is healthy. This other one has Parkinson's. And did you know that smoking may somehow protect the brain from getting Parkinson's disease?”

“I wish I'd known that years ago—I'd have started smoking.”

Naomi asks, “Do you want to cuddle?”

“Of course I do. Move over,” I say, squeezing in beside her. I wrap my arms around my girl while she leans her head on my shoulder. We hear Nellie jingling her way into the room and jumping up onto the bed. I'm in her spot, she whimpers. My head is on her pillow, she woofs.

“Don't go,” Naomi whispers. “Stay.”

So I stay, forcing Nellie to cancel her pillow reservations and curl up at Naomi's feet. The three of us close our eyes, but only the dog falls fast asleep. Together, Naomi and I luxuriate in this shared end-of-day stillness. Neither of us can remember the last time we cuddled like this, but our bodies remember. Tentatively, our legs entwine and our arms overlap—reviving the affection I thought we'd lost, collateral damage from the Bad Old Days. Naomi yawns, pulls the covers close, and rests her head on my shoulder. We are tired, but we continue talking about brains and dogs, while invisible threads of trust begin mending our tattered love.

AS AUTUMN PREPARES
to make way for winter, the neighborhood squirrels are busy collecting nuts. At the same time, I'm frantically foraging for help and hope. So far, I have collected nine health care professionals spanning the spectrum of the medical rainbow—five doctors (a general practitioner, a neurologist, a naturopath, a homeopath, and an acupuncturist), three therapists (a physiotherapist, a massage therapist, and a psychologist), and one beautician—all of whom I consider essential for tending to my calamity, my sanity, and my vanity.

The beautician's name is Diane. She's French, middle-aged, and well preserved. Her skin has a youthful glow, her hands are supple and manicured, and the pores on her face are never clogged. She radiates natural beauty, as if she doesn't need any of the expensive anti-aging, exfoliating, beautifying creams and lotions she recommends to her clients. She owns the beauty salon down the street. If it weren't for her, our neighborhood would be overrun by hirsute women with clogged pores, brittle nails, and unibrows. I'm one of her regulars. Every two weeks I show up for an electrolysis treatment, and each time Diane assures me that it's working. I want to believe her.

In the 1990s, I used to be a hirsute heroine. I credit my hairy legs, pits, and pubes for catapulting me to cult status. And not just at the local swimming pool, where I was affectionately nicknamed Chia Pet. No, my furry fame grew out all across Canada, the United States, and even Japan.

It all started with a cheeky cartoon of a happy, horny, hairy lady I named Libby Doe, who bore a striking resemblance to me in my birthday suit. After I drew her, I composed the following poem:

I AIN'T NO SHAVE SLAVE