Sex and Dogs and Crowd Control
ACCORDING TO BERGEN, I am the sexiest female patient in this waiting room. Mind you, I am also the youngest female patient in this waiting room—decades younger than anyone else. Some might say this gives me an unfair advantage. And I would agree, if we were posing for Playboy magazine’s “Naughty and Neurodegenerative Vixens” photo spread. But sadly, we’re not. My cleavage has no clout at this clinic; my feminine charms beguile Bergen alone. So, just like these old ladies, I must wait my turn to see a Parkinson’s specialist. But I don’t mind. I’ve come prepared.
For I am a waiting room warrior—armed with snacks and water, diversions and distractions, a typed list of questions to ask the neurologist, and, most important, Bergen. He’s sitting right beside me, getting his fix of black holes, genetic mutations, evolutionary theories, space exploration, dinosaur discoveries, and biochemical breakthroughs. He never leaves home without his Scientific American. I’ve always admired his thirst for this knowledge—and now that my brain is malfunctioning, his scientific aptitude comes in handy.
I also brought along something to read—Michael J. Fox’s autobiography, A Lucky Man. I flip it open and pick up where I left off, at his memories of the Back to the Future movies he starred in. Which gets me thinking of time machines and traveling back to my past to that magical day Bergen and I got married. And it’s all so vivid; I can smell the flowers in my bouquet, I can see Bergen’s hazel eyes welling up with tears, and I can hear his deep voice reciting his romantic wedding vows:
I, Bergen, take you, Robyn, to be my young, nubile wife, to love, honor, and chauffeur to doctor appointments and medical laboratories, in sickness and in traffic, with you backseat-driving me crazy, until death do us part.
My heart bursts with love as I reach over and squeeze his hand, repeatedly. I can tell by the way his eyes eventually lift off the page to gaze into mine that he appreciates this interruption. As he lets out a long sigh—code for “Nothing is more important than you”—I know we are speaking that mysterious language reserved for lovers, a language composed of private gestures and pet names and secret desires. I am tempted to kiss him on the lips, or mouth the words “Je t’aime,” but both seem so clichéd. Instead, I whisper in his ear that flirtatious phrase, which he once heard me muttering in my sleep, a phrase that fused sex with science in the middle of the night: “Plate tectonics, baby, plate tectonics.”
Finally, a nurse calls my name, and I am ushered into an examination room. Bergen comes along.
“The doctor will be with you shortly.”
Her words go in one ear and down to my bladder. I have to pee. Urgently. Again.
“Where’s the nearest washroom?” I ask.
She points down the hall, to the left. “Be quick,” she says, smiling.
Did she just crack a Parkinson’s joke? Or is she being sincere?
When I return, Bergen is reading his Scientific American with his eyes shut. I bet it’s something he learned how to do from one of the physics articles. There’s probably a technical term for this study technique—something really hard to pronounce. I’ll have to ask him about it later, because someone’s knocking on the door. A tall, dark, and handsome man enters the room. He introduces himself and explains that he is a visiting neurologist at the clinic.
“If it’s OK with you, Miss, I’d like to conduct a preliminary examination.”
I’m impressed: such nice manners; he even called me “Miss.” If I am ever abducted by extraterrestrials, I hope they are this polite.
“That would be fine,” I say. And so he begins. Probing question after probing question about my medical history and my family history. Physical tests. Reflex tests. Visual tests. Memory Tests. Psychological tests. He records each answer on a sheet of paper. He draws diagrams and charts and family trees. And when he’s done, I realize I’m doomed: neurological diseases run rampant in my family. Alzheimer’s, multiple sclerosis, Parkinson’s. But before my Cry Lady crumples in a heap of tears, the Visiting Neurologist says, “Please excuse me. I must go tell Dr. Stoessl I am done, and we are now ready for him to exam you.” I wipe away the tears dripping down my face and turn toward the sun-filled window. There’s not a cloud in the sky. I tuck my tissue in my pocket and say to Bergen, “It’s a beautiful day for a second opinion.”
When the Visiting Neurologist returns, he is accompanied by Dr. Stoessl—director of the Pacific Parkinson’s Research Centre and National Parkinson Foundation Centre of Excellence and considered by many to be the best Parkinson’s expert in town. He shakes our hands and takes a seat behind the corner desk. Bergen and I sit in chairs across from him, while the Visiting Neurologist remains standing. Dr. Stoessl’s bearded face consults his computer; then he picks up his pen and gives it an orchestra conductor’s wave. And right on cue, the Visiting Neurologist clears his throat and begins his diagnostic serenade:
“It’s a tragic tale that I recount, of a dark-haired, middle-aged dame, whose ancestors were cursed and dutifully nursed because of their broken brains. And this dame did succumb to sensations numb, impaired movement, and melancholic pain. She’s been told by one neurologist, Parkinson’s is her nemesis, and comes to you, a second opinion to obtain.”
“I see,” says Dr. Stoessl, rising from his chair, staring in my direction. “Do you mind if I have a look?”
And so begins round two of the examination. More testing of motor function, reflex reaction, strength and balance, agility and flexibility, sensation and numbness, cognitive function, short-term and long-term memory. And then the verdict: “You have Parkinson’s disease. Early-onset Parkinson’s. You’re in the early stage.”
“Are you sure?” I ask, clinging to the finest thread of hope, tears streaming down my cheeks. “Could it be something else instead of Parkinson’s?”
Dr. Stoessl hands me a box of tissues and says, “Why? Do you want it to be something else? If it were something else, it would be worse.”
I can’t imagine anything worse than this, but I’ll take his word for it. He is the expert, after all.
The discussion turns from diagnosis to drugs. Dr. Stoessl tells me there are many options for treating Parkinson’s. But he won’t prescribe any meds now; my symptoms are much too mild. Yes, I drag my left foot, my left arm doesn’t swing, and my entire body has slowed down. But that’s considered a cakewalk around here. In fact, he thinks I could run circles around his advanced patients. I know a challenge when I hear one, and if it weren’t for my cranky Cry Lady bringing me down, I would get off my ass and race the old lady in the wheelchair I saw in the waiting room. I’d race her all the way down the hall and back. Just for fun. But sadly, I’m not in the mood. That’s clear to everyone in this room—Dr. Stoessl, the Visiting Neurologist, and Bergen—that although I’m on antidepressants, I am still quite depressed. So he refers me to his colleague, Dr. Young, a psychiatrist who treats depressed Parkinson’s patients. Like me. And when Bergen and I leave the clinic, sunshine escorts us to our car. And I think, it really is a beautiful day for a diagnosis. There’ll be no third opinion, after all.
ANOTHER DAY, another appointment. This time with Dr. Young, the psychiatrist.
He’s bald and British and bombards me with questions about my depression, my family, my childhood, my body, my work, even my dog. He is so thorough, and I am so thoroughly bored.
Blah blah black sheep of my family. . . have I any woe?
Yes sir, yes sir . . . time to go.
I leave with a prescription for the same antidepressant I’ve been taking, just a higher dose, which, hopefully, will elevate my mood. I also receive a card indicating the date of my next appointment, four weeks from now. I can hardly wait.
THIS MORNING’S BREAKFAST is dedicated to Dawn Marie Jones (née Kelly), AKA Cupcake the Party Clown. After a courageous battle with cancer, Dawn joined the Lucky Ones. She is survived by her soulmate, Andrea; her two children, George and Sharayah; her parents, Christopher and Teresa; her siblings, Christopher, Robert, and Tina; her many friends, and fans; and her performing partner, Dougie the Duck. So, in lieu of boring cornflakes, I’m having something fun—chocolate pancakes with maple syrup. And sprinkles.
IT’S SNOWING IN VANCOUVER. It started last night. Just a civilized dusting of shimmering white—enough to add irony to the snowdrops already in bloom and plenty to turn sidewalks slushy and slick. But not nearly enough to answer Naomi’s prayer that school will be canceled.
This morning at breakfast, Naomi complains, “Why can’t we get walloped by snowstorms and blizzards, just like the rest of Canada?”
“Because winters on the west coast are wimpy.”
My answer makes Naomi smile.
“Actually, we live in a temperate rain forest.”
Naomi rolls her eyes at Bergen—code for “spare me the scientific lecture”—and gobbles up the rest of her cereal before heading off to school.
I look out the kitchen window at the parade of snowsuits, toboggans, and swirling snowflakes, enticing me to join the fun. Winter is such a flirt—and I’ve always fallen for its charm. But not anymore. Parkinson’s has fogged up the view from my rose-colored glasses; it’s made me clumsy and unstable and paranoid about slipping on the ice. If I didn’t have a dog, I’d probably stay indoors on a snowy day like this. If I didn’t have a dog.
After cleaning up the kitchen, Bergen and I take Nellie for her morning walk. At least, that’s what we set out to do. But Nellie has other plans—and she does not want to be late. I do my best to pick up my pace without falling and breaking my neck. For a snowy day, we make it to the dog park in record time. I unhook Nellie’s leash, but instead of racing off as she usually does, she just stands there, knee deep in snow, stylish in her black fleece Dracula cape. She is poised and polite—graciously exchanging some courteous sniffs with some curious dogs—and then, as if on cue, she rubs her face in the snow, flashes us a toothy grin, and begins her one-canine show: the Abominable Snowdog Ballet.
She is riveting—I can’t take my eyes off her, and neither can Bergen nor the curious dogs and their owners. I also can’t stop laughing—Nellie is hilarious.
With the speed of a cheetah, and the craziness of a clown, Nellie carves concentric circles in the snow. Round and round and round she goes, a blur of fur, her cape aflutter, barking with delight.
“Look at me!” she yowls.
“Go Nellie!” we cheer.
She stops for a moment to catch her breath, then resumes her berserk ballet. Round and round again she goes, plowing through the snow, a little more slowly with every pass, her cape coming undone. And when at last she flops to the ground, rolling on her back, her belly fur is covered with clumps of snow—like dangling Ping-Pong balls. Over she rolls and up she stands. She’s ready to romp again. But her poor little legs are encased in snow—all the way from her paws to her paunch—and she walks like John Wayne wearing a diaper. It’s the funniest thing to see.
Bewildered, she trudges toward us, and with blinking eyes and snowy face, she lets out a little yelp—“I’m ready to go home”. The show is over. The crowd applauds. Nellie curtseys as she pees. There will be no encore. No Q & A. No autographs to sign. Just a warm bath to melt her clumps, a towel to pat her dry, and a photo of Nellie dancing the Abominable Snowdog Ballet on the mantel to remind me of the fleeting joy I felt that snowy day.
VALENTINE’S DAY. The forecast calls for heavy menstrual flow with a chance of leakage, low-pressure back pain, and scattered showers of tears. Expect gusty mood swings and libido temperatures well below zero. Non-flirting advisory in effect.
Bergen gives me a lovely bouquet of flowers anyway. I give him a morning hug, then dissolve into tears.
“I’m sorry,” I cry. “I’m so sorry for getting sick.”
This has been my mantra for months. He’s grown accustomed to these apologetic eruptions, the spewed-out remorse and regret. Just as he’s grown accustomed to my downhill slide—from wife to washout, from co-parent to couch potato. He is overworked and overwhelmed, juggling consulting contracts and home renovations while doing all of the chores we used to share—housecleaning, grocery shopping, cooking, and parenting. I marvel at his vitality and his lack of complaining. And even though he would welcome me back to the team, he supports my temporary reassignment to another department. My new business card reads:
ROBYN MICHELE LEVY
Off-duty Wife and Mother
Convalescence Specialist: Department of Doldrums and Conundrums
I take this new job seriously. So do Bergen, Naomi, and my growing collection of health care professionals. It’s a collaborative process. And it’s working.
IT’S TAKEN A WHILE, but my denial has almost disappeared. I just find fragments in the mornings, in a semiconscious state, while I’m waking but still tethered to a dream. Sometimes I am flying or dancing or lying in bed with Leonard Cohen touching my perfect body with his mind. My perfectly healthy body—with two swinging arms and two steady legs and a brain brimming with dopamine. That’s the body I have beneath these sheets. Before I’m wide awake. Before remembering wrecks everything.
NAOM I’S FOURTEENTH BIRTHDAY. The evening forecast calls for scattered shoes stinking up the hallway, couches crawling with hungry, hormonal teenagers, and a steady stream of screams and laughter. Expect messes and mayhem and all-night horror movies. There is a risk of heavy petting.
I have been dreading this party for weeks. Back when I caved in to Naomi’s request, I had high hopes that Big Pharma and her chemical concoctions would deliver a knockout punch to my depression and anxiety so that by the time Naomi’s birthday rolled around, I would be well enough to welcome twenty teenage boys and girls into our home. But no such luck. I’m not ready to sacrifice my sanctuary. Ready or not, here they come.
They arrive ravenous. Snacks are devoured. Drinks are gulped down. The noise level is deafening. And the more chaotic the kitchen gets, the more neurotic I become. “Don’t worry,” Bergen says, “I’m on clean-up duty. You can just relax.” That’s easier said than done—my mind is racing, my muscles are tense, and my Cry Lady can’t stand kids. So I take Nellie for a walk, then retreat to our bedroom. Small doses; that’s my survival strategy. I pop in and out of the party—for homemade pizza, birthday cake, the opening of gifts, and the exodus of the boys—but mostly I hide away. And when the girls get ready for the sleepover, I crack open a brand-new pair of earplugs and climb into bed.
Miraculously, I get some sleep. In the morning, I tiptoe downstairs to the living room, which is strewn with mattresses and pillows and girls in pajamas—some sleeping, some whispering. Nellie is curled up beside a tangle of feet. One pair belongs to Naomi; the other pair belongs to one of her friends. Together, the girls stir beneath a blanket, then drift back to their dreams.
Compared with the racket last night, the house is incredibly quiet. So quiet I have space to think. Two thoughts pop into my head. I definitely prefer teenagers when they are asleep. Better yet, I prefer other people’s teenagers sleeping over at other people’s homes—not mine. Is that too much to ask? A wave of guilt washes over me. Poor Naomi. What kind of a stick-in-the-mud mother have I become? These kids are terrific. I should feel lucky that they feel comfortable enough to make themselves at home—raiding our refrigerator, dropping their clothes on the floor, yelling at the top of their lungs. And for a moment, I do. But then one of them farts. And another one starts laughing. And pretty soon all the girls are awake, transforming my quiet morning into a chaotic chorus of girls brushing their teeth, toilets flushing, cell phones ringing, music playing, and girls gossiping, while I silently repeat over and over in my head, “Go home. Everyone, go home.”
MUCH TO MY CHAGRIN, neurodegenerative diseases don’t dillydally—there’s always more damage to be done. The latest casualty is my left baby toe, oddly jutting out straight to the side. Every day this little piggy moves farther away from the little piggies living next door. I’m afraid if it moves any farther, it’s going to fall right off my foot. Losing a toe wouldn’t be the end of the world, but it could set a dangerous precedent. What if more toes jump ship? And my left foot falls off? And then other left-side parts depart? I feel my blood pressure rising while I’m catastrophizing. This paranoia has got to stop. Clearly, my imagination is progressing more quickly than the disease. So I take slow, deep breaths, in and out, until I’m feeling calm. Nothing is falling off or jumping ship—this little piggy is staying home.
GOOD HELP IS HARD TO FIND, unless you happen to live next door to Will and Helen, the most helpful neighbors in town. Pull up with a carload of groceries and poof!—Will magically appears to help carry everything inside. Find yourself in need of parenting advice and voilà!—Helen shares her time-tested techniques. Over the years, they’ve also walked Nellie, washed our car, collected our newspapers and mail, spotted Bergen on the ladder, helped build a trellis, rescued me when my car broke down, and offered a shoulder to cry on. Will, who happens to be a dentist, has also provided emergency dental examinations.
Giving them a helping hand is not easy. Usually they turn down our offers of assistance. And so we reciprocate with plates of homemade banana bread, cookies, lemon meringue pie, as well as a supply of homegrown kiwis and homemade jam. They always appreciate these offerings, even though their three teenage daughters (or their daughters’ boyfriends) sometimes get to the food first.
For obvious reasons, my baking—and their partaking—of these treats has temporarily stopped. I’m sure they understand—they know about my diagnosis. But what they don’t know, and I’m only just beginning to comprehend, is how much my identity and self-worth are wrapped up in cracking eggs, mixing in honey, oil, and flour, popping this concoction into the oven, and then sharing the results with family and friends. It’s as if, on an existential level, I bake; therefore I am. No wonder I’m feeling so lost and inconsequential—I haven’t baked anything in months.
BERGEN WAS RIGHT. Back when my biological cuckoo clock was ticking, every hour I would chime, “Let’s have a baby together.” And without missing a beat, Bergen would respond, “You mean, let’s have a teenager together.” Of course, that’s not what I meant, but that’s what we got, rather quickly. A teenager with all the typical bells and whistles—including acne and angst and attitude—and sexual desire.
Having been one horny teenager myself, albeit thirty years ago, I believe teen sexuality is natural, beautiful, and inevitable. That’s why there’s only one rule about sex in our house: no one is allowed to have more fun than Bergen and me. I realize this may put a damper on Naomi’s fun—considering that Parkinson’s has parked my libido—and my only interest in sex is putting a checkmark in the female gender box when filling out health forms. But a rule is a rule.
Meanwhile, I’m trying not to worry. My desire has ebbed and flowed all my life, depending on health and circumstances. For instance, after giving birth to Naomi, my sex drive drove off with the placenta. But it came back, eventually. Just as it has other times in my life. So I am hopeful, and so is Bergen, that it will return again, soon.
I’m also trying not to worry obsessively about Naomi. As unique as she is, she resembles both Bergen and me: she got his feet, my eyes, his smile, my shape, his sociability, my artistic disposition. And if she got all that, what if I have unwittingly passed on Parkinson’s? Even though the jury’s out on whether to blame coincidence or inheritance for my dad’s and my misfortune, I can’t help but feel genetically responsible for putting her future health at risk. I would do anything to protect her from succumbing to this disease. Unfortunately, there’s no vaccine or panacea to offer her. At least not yet.
So my worry continues and wanders about until it latches on to manageable risks. We give her vitamins and vegetables, math tutors and car rides. We give her a cell phone to keep her connected. And we give her plenty of eye-roll-inducing parental advice. Including my “one drop” talk. As in, all it takes is “one drop” to get a girl pregnant. And it can happen when “one drop” drops in the vicinity of a vagina. This was news to her, but since she had a boyfriend at the time, I thought she should know.
Yesterday, Naomi took her turn, sharing news she thought we should know. Personal news that took incredible courage to convey. We listened intently to her three-word proclamation that confirmed our hunch:
“I am bisexual.”
We marveled at how effortlessly these words slipped out of her mouth. Such honesty at age fourteen. And as we talked about her world and how she sees herself fitting in, everything and nothing had changed. And when I tucked her into bed that night, my worry turned to wonder.
IN THE MEANTIME, I’m keeping my rendezvous with Dr. Young. By my third appointment, I’m getting used to the drill—it’s like playing psychological Ping-Pong. He serves me a question; I fire back an answer. We volley back and forth until he knows how I’m feeling, sleeping, doing, coping, adjusting to the meds, and even how my family is. Clearly, Dr. Young is winning: he knows all about me, I know nothing about him. Except that he’s British, balding, and married. Suddenly, my competitive streak kicks in.
“That’s quite the collection you’ve got,” I say, pointing to a mess of tangled name tags hanging from a hook on his office door.
Dr. Young lets out a sigh of resignation. “Those are from all the conferences I’ve attended this year.”
“Do you enjoy going to these?”
“To be honest, I hate traveling. I don’t usually mind the conferences, though they can be boring. But it’s part of my job.”
We stare at the dozens of dangling, dejected name tags, each one bearing his credentials and conference location. And I think to myself, if you hate traveling so much, why on earth do you display these travel mementos, here, in your office, where you are forced to face them every day at work? If you ask me, this behavior smacks of masochism. I bet it’s even listed in the Diagnostic and Statistical Manual of Mental Disorders: Self-Torture Travel Disorder. Poor Dr. Young. I think he may need professional help.
He turns his attention to his notes, glances at his watch, then asks the usual end-of-session question:
“Is there anything else you’d like to tell me?”
I hate this question. It always makes me feel guilty, as if he suspects that I’ve been intentionally withholding vital information and now is my chance to come clean. To spit it out. To reveal my deepest, darkest secret. Which I have absolutely no intention of sharing with him.
“Nope,” I say.
“Very well then. Let’s book you in for your next appointment. How does six weeks from now sound.”
“That would be fine.”
I mark the date in my calendar, and as we say good-bye it occurs to me—we all have our collections. Some of them dangle. Some of them don’t. But they all remind us of something—sometimes even the things we’d rather forget.
MY LEFT HAND is on hiatus; its fingers have turned to stone. They look like frozen french fries, ready to be cooked. The very sight of them makes my Cry Lady weep. “Farewell, manual dexterity,” she moans. I sympathize with her sorrow, but she’s overreacting—my right hand is still nimble fingered. I remind her of that and of how lucky I am—so far only the left side of my body is affected. It could be years before Parkinson’s migrates. Plus, I’m not taking any medication yet. This consoles my Cry Lady, for now, but I can tell that she’s still shaken up.
Compared with her, I’m adjusting remarkably well to the new and worsening me. It turns out, most activities I do can be done with one hand: emptying the dishwasher, working on the computer, doing the laundry, shampooing my hair. Even walking the dog. And when I need a helping hand with chores—chopping vegetables or folding towels—I just wave my tragic wand and poof!—Bergen turns into my sous chef, and Naomi my girl Friday. They are so loving and so loyal—they’d be crushed to find out that I am even thinking of asking our neighbor for help. But in the bathroom, I have heard the sound of one hand flossing, and it’s not pretty. Neither is the spell it has cast on my sexual fantasies.
It’s late at night. I’m lying in bed, sliding my tongue back and forth—slowly, smoothly—across my teeth. Bergen is next to me, sound asleep. My tongue stumbles on something stuck between my molars. A kernel of corn? A smidgen of chicken? I can’t be sure, but whatever it is, it must be removed. So I slither silently out of bed, creep down the stairs, and slip out the front door. My Victoria’s Secret nightgown flutters in the wind. Bursting with desire, I limp lasciviously across the street. A tiny gasp escapes my lips. There he is—my neighbor, Will, the dentist. I can feel my heart throbbing, and my knees go weak. We stand beneath the full moon and glittering stars, staring deeply into each other’s teeth, until finally I whisper, “Floss me, Will, floss me.” And he does.