She looks me straight in the eye and calmly drops the bomb. “You have Parkinson’s disease. I’m sorry.” She braces herself for another biblical flood of tears.
“How can you be sure?” I blubber.
“You present with many classic Parkinson’s symptoms: muscle rigidity, slow body movements, flat facial expressions, depression.”
“But you said that part of my brain looks normal.”
“The only way to be 100 percent certain is by doing an autopsy of your brain. It’s a little early for that.”
“So you could be wrong?”
“I’d love to be wrong, but I don’t think I am. You can get a second opinion.”
At the end of this appointment, Dr. Smyth answers my questions and gathers together depressing handouts for me to read. I tell her I’m plagued by the letter p. PMS, premenopause, and now this—Parkinson’s. She suddenly bursts into laughter and says, “And me. My first name is Penny.” The absurdity of it all gets me laughing. But not for long. Heaving sobs return, and Dr. Smyth becomes solemn and says, “It’s going to be OK. You’ll see.” And because Lisa is out in the waiting room, and Bergen is up in the Yukon, I ask Dr. Smyth for a hug. She walks over to me and opens her arms, and I pretend I’m embracing a beautiful young movie star, not a neurologist who has diagnosed me with an old person’s disease.
BATHTUBS ARE VERSATILE VESSELS—just fill one up and pick a verb: soak, wash, relax, play, read, write, talk, sing, study, cry, celebrate, rejuvenate, meditate, masturbate, fornicate. I’ve done it all. More than once. But tonight is different and requires different verbs. And so Lisa lights some candles, pours us a bath, and together we weep, grapple, question, despair, console, and deny the shocking news. And by the time we’ve toweled off and the bathwater has drained, the neurologist’s devastating diagnosis feels right: I have early-onset Parkinson’s disease. Just like Michael J. Fox. Of course, I’ll get a second opinion from an expert in the field, to be absolutely sure. But my doubt has diminished. Just like me.
Later, when Bergen calls to say goodnight, my soft voice breaks the news. We fill the phone line with long vulnerable silences. Space to breathe. Space to cry. He’ll be home soon, with his luggage and laptop and pent-up sorrow. And he’ll tell me he loves me, still. And this is the first thing I want to believe this week.
I HAVE A CONFESSION: I married an older man. Three years older, to be exact. Mind you, that’s in dog years. Multiply three by seven and you get the age difference in human years—something to really bark about. I never expected things to last. It was supposed to be just a summer fling—fun and fleeting. But come autumn, our hearts were entwined like two tangled dog leashes, and by winter we had begun to build a life together. That was sixteen years ago.
It’s amazing how love bridges the generation gap between us. But it does nothing to ease my anxiety. Even though Bergen is in perfect health, possesses boundless energy, and looks much younger than most men his age, I always worry—a lot. I worry that he’ll have a heart attack or stroke and die. Or that he’ll have a heart attack or stroke and survive—living out the rest of his life in a vegetative state, leaving me stuck changing his diapers and spoon-feeding him mush. I even worry that I lack the moral fortitude to stick around if such a tragedy strikes.
All this worrying can land me in the doghouse. On the rare occasions I find Bergen napping midday, if I don’t see his chest rising and falling, I work myself into a tizzy until I’m convinced that his slack jaw and limp body can only mean one thing: he’s dead. Panic sweeps through me, followed by grief. All hope is lost. But on the off chance he’s not dead, I yell out his name and give him what I call a “love shove” but what he calls a “paranoid punch.” There’s no point quibbling over words, especially since my arm movement either jolts him wide awake or brings him back from the beyond. All that really matters is he’s alive and well, albeit a little groggy—leaving me giddy with relief.
My obsessive worrying is based on the belief that older husbands are more susceptible to disease than younger wives. Now I’ve blown that theory out of the water. And although I regret getting Parkinson’s disease, I appreciate the irony of the situation: a future where it’s possible, and even probable, that my senior-citizen husband will spend his golden years changing my diapers and spoon-feeding me mush. Will he stick around? Do I want to be a burden to him? Tough questions. Unknown answers. More doggone things to worry about.
THE MORNING AFTER Dr. Smyth’s diagnosis, I lie in bed, stiff as a board, staring at the ceiling. Finding the motivation to get up isn’t easy, considering this is the first day of the rest of my neurodegenerative life. There’s so much to not look forward to: dry skin, dry scalp, dry eyes, incontinence, constipation, tremors, falling, freezing in place, stooped posture, involuntary movements, dementia. It’s all listed in these helpful handouts Dr. Smyth gave me. But the thing I dread the most is telling Naomi. She doesn’t know yet. I’m waiting until Bergen gets home so that we can break the news together. Tomorrow, after school. This gives me a bit of time to think things over. To research and strategize. To come up with a plan. Thank goodness I have Sweet Lisa to talk to.
After breakfast, Naomi heads off to school, and Dani watches cartoons on TV. Lisa and I sit at the table, sipping hot lemon drinks. Neither of us slept very well last night, and it shows—we both have bags under our eyes. We sit in silence watching Nellie gulp down her bowl of food. When she’s done, she lets out an impressive burp. I usually laugh whenever she does this, but not today. Instead, I dab my eyes with a tissue and say, “I’m really scared to tell Naomi.”
“Of course you’re afraid. It’s such a scary thing for you to have to deal with and to have to tell your daughter. Do you think you’ll tell her on your own, or with Bergen?”
“With Bergen. I need him to be there with me.”
“That sounds like a good plan.”
“She’s only thirteen. This is going to ruin her life,” I say.
“No it’s not. It’s going to ruin her day, maybe even her week. But not her entire life.”
“Why do you say that?”
“She’s a teenager. And the wonderful thing about teenagers is that they are incredibly self-absorbed. She’s not thinking long term, just how it’s going to impact her right now. She’ll go back to her life afterward.”
I mull this over while Lisa peels us an apple.
“She’s also your and Bergen’s daughter. She’s been around adults all her life. And she’s expressive, resourceful, intelligent, and resilient. She’ll be fine as long as she has the opportunity to talk with people.”
“But you know she’s depressed.”
“I do. But I don’t think this is going to throw her into a deeper depression. If anything, she might feel relieved, knowing the reason you haven’t been well these past years.”
“How much information do you think I need to tell her?”
“I would try to keep it simple. Explain the biology. Answer all of her questions. And if she doesn’t ask any, don’t worry. She’ll ask when she’s ready to know.”
“This is the hardest thing I’ve ever had to do in my life,” I moan.
“I know it is.”
“It’s heartbreaking to imagine a daughter watching her mother disintegrate. You know the saddest thing of all?”
“What?”
“I’m afraid that Naomi’s memories of me, back when I was vibrant and healthy, will be displaced by this disease. She’ll forget who I used to be, what I used to do. I’ll just be her sick mom.”
“I hope she doesn’t lose those memories. And if she does, we’ll just have to remind her.”
Later that day, I crawl under my covers and take a much-needed nap. By the time I wake up, Lisa and the girls are cooking dinner. I watch them taking turns stirring a pot and tossing a salad while they sing along to Feist: “1, 2, 3, 4, tell me that you love me more.” Lisa looks my way and smiles. I try to smile back and enjoy the moment, but I’m too busy worrying about tomorrow. That’s when Lisa
leaves and Bergen comes home and I tell Naomi that I have Parkinson’s. My sadness summons my Cry Lady, but I’m determined to give her the night off. So I pour myself a glass of wine, sit down at the table, and will my tears away. Nellie wanders over and curls up by my feet. The rain taps out a rhythm on the kitchen skylights, while I breathe in the mingled smells of wet dog and roasted vegetables. Not the most appetizing aroma, but better than roasted dog and wet vegetables.
After dinner, when the kitchen is cleaned up and homework is done, Lisa puts Dani to bed. Then Lisa, Naomi, and I cuddle up on the couch and chat about high school, close friends, and dating. Lisa asks Naomi, “Do you know that your mom dated a movie star?” Naomi’s eyes light up. “Really?”
“You mean you haven’t told her?” Lisa gives me one of her mischievous smiles.
“Not yet,” I admit.
“Well, what are you waiting for? Tonight’s the night. Naomi, you’re mom dated Dr. McDreamy, on Grey’s Anatomy.”
“That was so many years ago,” I say.
By the look on Naomi’s face, I can tell she’s impressed and bewildered.
She says, “I can’t picture what he looks like.”
So we Google him on the computer, and voilà, there he is, all grown up and gorgeous, a hot Hollywood star. I tell Naomi the sanitized version of the story.
“I was only twenty-one and still living in Toronto. I was working part-time at a trendy clothing store, downtown on Yonge Street. And one day, this tall, cute guy walks in and we start chatting and joking around. I remember he was quite funny. Anyway, I help him pick out a bunch of stuff to try on. Of course, everything looks great on him. And when he’s done, he walks out of the change room, carrying this mountain of jeans and shirts, and says he’ll take everything. I’m a bit shocked but try to stay cool as I ring up his bill. When I ask him how he wants to pay, he hands me a credit card. But he’s got such an adorable baby face, I ask him, “Do you have a note from your mommy?” He laughs and tells me the credit card is his, not his mom’s, and says he’s an actor, performing the lead in Brighton Beach Memoirs, a Neil Simon play. And then he invites me to see the show. So I go. And that’s how our brief summer romance began.”
“How old was he?” Naomi asks.
“Around nineteen.”
“Why didn’t you tell me this before?”
“I guess I was waiting for the right time.”
Naomi rolls her eyes at me, and I brace myself for more questions about my love life, but the phone rings and she spends the rest of the evening yakking to her friend. On my way upstairs, I overhear her talking about me. Not the usual bitching about her sick mother who’s always crying and complaining and making her life miserable. Instead, I hear her gushing with pride and delight about my mysterious life—before marriage and motherhood—and about how much she misses being close to me. And for the first time in years, I sense the strength of our underlying love, and I allow myself to imagine us reconnecting and deepening that love.
The next day, I drive Lisa and Dani to the airport. Saying good-bye to my surrogate spouse isn’t easy. For five days, I have feasted on her wisdom and love, spilled my sorrow into her heart, and taken refuge in her compassion. Now that she’s gone, I feel exposed and vulnerable, like a desert flower caught in a sandstorm.
A few hours later, Bergen is back and I crumble into his arms. “I’m sorry. I’m sorry. I’m sorry,” tumbles from my mouth.
“I know. I’m sorry too.”
By the time Naomi gets home from school, we have synchronized our sadness and are ready to reveal my diagnosis. Bergen makes a pot of tea and asks Naomi to join us in the living room. She takes a seat on the couch next to him and smiles nervously at me, sitting rigidly in the armchair.
“We have something to tell you,” I say, holding a tissue in my hands.
Naomi waits in silence, looking down at the floor. Bergen clears his throat, then says, “You know that Robyn has not been feeling well for quite a while. And she’s been going to different doctors, trying to find out what’s wrong.”
Naomi slowly nods her head and looks toward me.
I take a deep breath and say, “I now know what’s wrong. I have Parkinson’s disease.”
For a moment, her eyes stare blankly into mine, as if my words are meaningless. Then a flash of comprehension contorts her face and triggers a landslide of primal emotion.
“Are you going to die?” Naomi weeps, swept away by fear and anguish into a motherless state.
It’s the question I’ve been waiting for, preparing for. Tears stream down my cheeks as I recite a quote I read in one of Dr. Smyth’s pamphlets:
“People don’t die from Parkinson’s. They die with Parkinson’s.”
Somehow, the way I say this sounds unintentionally lighthearted, like I’m only dating an incurable neurodegenerative disease, not married to one. My answer doesn’t ease Naomi’s mind. If anything, it agitates her. I get up out of my chair and sit next to her on the couch. Our hands clasp and she leans her head on my shoulder.
“When did you find out?” she asks.
“Back in September I went to see a neurologist and she suspected I had Parkinson’s.”
“Why didn’t you tell me then?”
“Because the doctor wasn’t absolutely positive. And I didn’t want to worry you. Then, two days ago I went to see her again, and this time she was sure. She diagnosed me with early-onset Parkinson’s.”
I feel Naomi’s body pressing against mine, I feel her need to be protected. Holding her tight, I offer a cliché to cling to—the same cliché Dr. Smyth gave me: “It’s going to be OK.”
Bergen offers one of his own, “We’ll get through this together.”
I’d like to believe this—that a family that clichés together stays together—but I’m not convinced. I’m sure Naomi isn’t either. We’re in the same sinking boat now: daughters coping with parents who have Parkinson’s. Under these circumstances, how can anything be OK? How can we get through this together, when I’m falling apart? Will she ever forgive me for getting sick? What if she’s next? How could I ever forgive myself? My mind natters on and on. My worries are endless, and they all lead to dead ends. Naomi snuggles in closer while I stroke her head. I want to say something to reassure her, to reassure myself. But she beats me to it. “Maybe they’ll find a cure.”
We let these words sink in. And while there’s plenty more to say, those other words will have to wait. We are busy contemplating and commiserating.
After dinner, we sit around the table, drinking tea and eating cookies. I feel emotionally drained but also relieved now that Naomi knows. She seems more relaxed, having had a few hours to absorb the shock and to realize that I’m not on my deathbed.
“How did you get Parkinson’s?”
“I don’t know. And I probably never will.”
“Is it genetic?” she asks nervously.
“The doctor says it’s unlikely.”
“But Zaidie has it. And now you have it. That doesn’t sound like a coincidence to me.”
“I know. It’s unbelievable.”
“It’s a brain disease, right?”
“Yeah. It’s a neurodegenerative disease. It’s also called a movement disorder, since it causes tremors, shaking, slow movement, things like that. People with Parkinson’s don’t have enough dopamine-producing brain cells. And without enough dopamine, our bodies can’t move normally. My dopamine brain cells are dying.”
“All of them?”
“No, not all of them. But lots of them. That’s why I look like a zombie.”
“No, you don’t.” Naomi smiles.
“Well, I feel like a zombie. I walk really slowly, and I have this creepy blank expression on my face.”
“I know there’s no cure. But isn’t there medicine you can take, to make you feel better?”
“There is Parkinson’s medication that helps improve body movements. And I’ll need to take it someday. But for now, I’m taking antidepressants.”
“Papa told me. Are they helping?”
“I think so. I’m not as depressed as I was before. Do you notice any difference?”
“Not really. You still seem pretty depressed. You still cry a lot.”
Her words cue my Cry Lady, and I burst into tears. “I’m sorry,” I sob. “I’m sorry for everything. For getting this disease. For not finding out sooner. But most of all, I’m sorry for how I’ve treated you and the suffering I’ve caused. I know I can never change the past, and I take full responsibility for the damage it’s done to our relationship. But I want you to know that depression is one of the symptoms of Parkinson’s. And the day someone is diagnosed isn’t the first day of their disease. I’ve probably had Parkinson’s for the past five years—that’s how long I’ve been dealing with this awful depression and moodiness and anger. I’ve been sick. And I’m sorry. I love you so much. I never wanted to hurt you or push you away.”
Naomi sits slumped in her chair, burying her head in her hands. She is crying quietly, processing everything I have said. I offer her a tissue and she wipes her face.
“Would you like a hug?” I ask.
She nods, and I go stand behind her, lean over the chair, and wrap my arms around her. She reaches up with her hands and weaves them into my embrace. Our embrace. Our new beginning—I hope.
NOW THAT LISA, Bergen, and Naomi know, it’s time to tell my father.
When I was a little girl, everyone always told me, “You look just like your dad.” Beaming with pride, my dad always responded, “I guess we’ll just have to dress her well.” Which my mother did. But much to my chagrin, nice clothes didn’t quell the comparisons. Neither did puberty, pierced ears, or makeup.
While growing up, I just didn’t see the strong resemblance. Sure, we both had big brown eyes, dark brown hair, and thick eyebrows. But so did lots of other people—including Groucho Marx, one of my father’s favorite comedians. In fact, there was a time my dad grew this bushy mustache and actually looked a bit like Groucho when he tilted his head at a certain angle. The implications of this were horrifying: if people thought I looked liked my dad, and if I thought he looked like Groucho Marx, then I was in double trouble. It was in times of crisis, like this, when I needed reassuring proof that our father-daughter resemblance was exaggerated. Fortunately, all I had to do was peer out through my mass of Medusa curls and stare at his shiny balding head. Me, his spitting image? Not a chance.
Most of Me Page 4