I’M GETTING PICKY in my middle age: I like my cereal cold and crunchy, not hot and mushy; and I like my diseases curable and short-lived, not incurable and degenerative. So what am I doing here? This place will be teeming with steamy bowls of oatmeal and people doing the Parkinson’s shuffle. Well, a promise is a promise. And besides, I’m in perfect shape to attend this Porridge for Parkinson’s fundraiser—I didn’t sleep very well last night, so my body is extra slow and extra stiff. I’ll fit right in.
Bergen holds my hand as we walk tentatively toward Marg and Noel’s front gate. The closer we get, the more uncertain we are of what awaits us. Smiling strangers welcome us into the garden, while other smiling strangers brush past us, carrying boxes and flowers and grocery bags. I don’t feel much like smiling—I’m famished and anxious. What if I bump into someone I know? What if they find out I have Parkinson’s? What if everyone finds out I have Parkinson’s? I’ve only told family and close friends—I’m not ready to go public yet. And neither is this crowd—no one is wearing a personal floatation device. I’m such a sucker for sympathy, all it would take is one teensy-weensy whiff of compassion and my Cry Lady lament would wash them all out to sea.
Someone points toward the basement and says, “Make sure you check out the silent auction. It’s down these steps.” We thank him for the tip, then walk upstairs to the porch. As at our last visit, a bushy-bearded Noel greets us at the front door. He’s wearing an apron and a chef’s hat and smells of cinnamon. We follow him to the kitchen, where he resumes stirring a colossal pot of porridge.
“Help yourself.” Noel gestures toward the spread laid out on the kitchen island. There are muffins and cookies, dried fruit poached in port compote, freshly brewed coffee, an assortment of teas and juice, porridge, of course, and, last but not least—the secret ingredient that makes this mush palatable—scotch whiskey. Not for drinking in a glass but for drizzling on top of the porridge.
After eating, I spot Marg. She’s sitting on a chair by the door, waiting for us to say hello. As we walk toward her, I wonder: Can she smell my fear? Hear my heart racing? See my feet fight the urge to flee? I bend down and give her an awkward hug.
“You made it,” Marg mumbles knowingly—she is still the Answer Lady, after all. She’s also the bravest person I know—unabashedly welcoming hundreds of people into her home, year after degenerative year, where bowls of porridge are doled out, generous donations are drawn in, and the Pacific Parkinson’s Research Centre gets closer to finding a cure. Marg truly believes it’s going to happen in her lifetime. And when we add our check to the donation box, I tell Bergen, “I hope she’s right.”
Just like the disease, this fundraiser is a family affair. The house is packed with people of all ages, most of whom do not have Parkinson’s. It’s easy to spot those of us who do—our bodies broadcast the telltale symptoms: tremoring limbs, bobbing head, rigid muscles, poor balance, stooped posture, shuffling walk, slow movements, expressionless face, hushed voice. Not everyone experiences every symptom, especially in the early stages, but there are enough of us here today to demonstrate each one.
Marg and Noel’s son, Mac, is one of many kids roaming around. We could have brought Naomi; she was invited. But my Mama Bear instinct knew not to. It’s only been a month since my diagnosis; it’s much too early to expose her to what lies ahead. And judging from my escalating anxiety and Bergen’s weary eyes, it’s much too early for us too. We give each other “the look,” and as we’re on our way out, my old Pilates instructor recognizes me.
“Hey, what are you doing here?” Kit asks.
A wave of shame sweeps through me. I feel caught and exposed—and unbearably guilty—for developing this disease, for being embarrassed I have it, for wanting to keep it a secret, and for not being totally honest.
“I know Marg from my days at CBC. I’m here to show my support. And you?”
Kit’s eyes quickly scan my flushed face, then my stiff-as-a-mannequin body.
“I give private Pilates lessons to Marg. Here’s my card.”
What does she mean by “Here’s my card?” Can she tell I have Parkinson’s? I don’t stick around to find out. I shuffle out the door and catch up to Bergen, who is waiting outside. His hair matches the silver-gray sky, still holding back the rain. It’s comforting, walking toward him, knowing that forecasts can be wrong.
4
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 l
ovely 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.
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