Most of Me (10 page)

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.