Most of Me

by Robyn Michele Levy

  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

  I ain’t no shave slave

  no beauty queen

  bikini waxes are not my scene

  I ain’t no shave slave

  no centerfold

  for every hair on this bod

  there’s a story to be told

  I ain’t no shave slave

  no depilatory dream

  electrolysis just makes me scream

  I ain’t no shave slave

  no Jolen junkie

  I trashed the tweezers

  I’m furry and funky

  I ain’t no shave slave

  no Vogue vixen

  it ain’t ingrown hairs that I’m itchin’

  I ain’t no shave slave

  no Barbie doll

  if you want me, darling

  you’ve got to take it all!

  On a whim, I printed greeting cards and T-shirts of Libby Doe and her poem—adding her to the other designs I was marketing through my art business. Of course, she stuck out like a sore nipple—shamelessly flaunting her tits, hairy pits, and private bits—and so I braced myself for a wide range of reactions. There were prudish pooh-poohs and testy tsk-tsks. But much to my delight, Libby Doe struck a positive chord. It seemed women from all walks of life could relate to her; they had a friend or a relative who didn’t shave, they themselves didn’t shave occasionally or at all, or they wished they had the courage to chuck the shaver and let it all hang out. And so, Libby Doe cards and T-shirts infiltrated multitudes of mailboxes, wardrobes, and, best of all, hearts. Teenagers would mail me fan letters and snapshots of them wearing the “I Ain’t No Shave Slave” shirt. Businesswomen in pantsuits would bashfully flash me their unshaven legs and buy a stack of cards for friends. Lesbians and hippies adopted Libby Doe as one of their own. Even women repulsed by real body hair found the cartoon body hair hilarious.

  And then Hollywood North came knocking. Penny Wheelwright, a Canadian documentary filmmaker, was working on Hair, There and Everywhere, a film exploring contemporary cultural attitudes toward body hair. She’d received one of my “I Ain’t No Shave Slave” greeting cards and gave me a call. Would I be interested in doing animation for her film, featuring this hirsute cartoon? Would I consider teaming up with hip-hop artist Kinnie Starr, who was composing original music for the film and wanted to set “I Ain’t No Shave Slave” to music? Would I like to be one of the hairy women interviewed in this film? I said yes to all three invitations.

  The documentary debuted prime time on CBC TV. Many people must have watched it, because strangers would do a double take when they saw me out in public, then give me that “Don’t I know you from somewhere?” look. Sometimes they connected the dots on their own; other times they needed prompting. But either way, they’d invariably say something like, “Hey, aren’t you that artist with the hairy armpits?”

  It turns out they all remembered me and my hair but not the animation or the theme song. But those tufts of hair are not why I’m here at Diane’s salon. All my life I have lived harmoniously with my minimustache, content to bleach it into peach-fuzz submission. But days after my diagnosis, a narcissistic neurosis infiltrated my mind. I’d look in the mirror and not only see an unsightly stash but also an unsightly future—where Parkinson’s has demoted me to diapers and dementia, where my nimble fingers fail to function, and where I am oblivious that my neglected whiskers have grown into a hideous handlebar mustache, which the staff at the nursing home trim, wash, and wax regularly. And so, in an effort to avoid this hairy humiliation, I submit my upper lip to Diane’s magical device—the Apilus Platinum—a needle-tipped pen she pokes into my hair follicles, then zaps with an electrical current. After this, she plucks out the damaged hairs with tweezers and triumphantly lays them to rest on a
fresh tissue. Of course it hurts, leaves my skin red and inflamed for hours, and costs hundreds of dollars. But it’s a small price to pay for dodging the dubious distinction of being the first woman to join the exclusive Handlebar Club.

  Regrettably, electrolysis is not covered by my provincial health care plan. Neither are naturopathy, homeopathy, acupuncture, massage, physio, and counseling. This explains my dwindling bank balance and my wretched wardrobe. Who knew hope was so expensive? There are consultation fees, treatment charges, vitamins, purported remedies, specialty foods, blood tests, saliva analyses, exercise equipment, self-help books—all sold in the spirit of healing and purchased in the pursuit of a miracle.

  Still, there are unexpected perks to practically everything—even Parkinson’s disease. One day I discover that my disease is helping my neighbor cope with hers. Susan is a chatty, hardworking chartered accountant, and while some might consider her profession hazardous to one’s health, that’s not her disease. It’s breast cancer. She was diagnosed six months ago but never mentioned a word to me until yesterday, when I spilled the beans about my Parkinson’s. How she managed to keep two lumpectomies, radiation treatment, chemotherapy, and a bald head secret is beyond me. But now that we’ve each flaunted our afflictions, the floodgates have opened wide. So today, while I am walking Nellie, Susan confides that in a few days she will be back under the knife, this time for a double mastectomy and reconstructive surgery.

  “I’ve got the Dream Team,” she says, “a fantastic surgeon to take them both off and a fantastic plastic surgeon to install two brand-new ones, right away.”

  It takes me a few seconds to process this admission, and before I have a chance to respond, Susan continues, “I have to tell you, for weeks I’ve been feeling really anxious about this operation, but not anymore. Last night I barely slept; I just kept thinking about your awful situation. Going over and over in my head what I’d do if I were you, forty-three years old, facing the future with a degenerative brain disease, raising a teenage daughter—these are such critical years when a girl needs her mother—and I did some research, found some good websites about Parkinson’s, and I have to tell you that some of these sites say early-onset Parkinson’s is more aggressive than the regular kind older people get. And the medication taken to deal with symptoms—it eventually stops working really well. So the big question is, do you wait until you really need the medicine, which could be years from now, and meanwhile continue slowing down? Or do you start taking the meds right away so that you can go back to being as normal as possible—for Naomi’s sake, at least until she graduates from high school? I don’t know, Robyn. It’s a tough call. You’ve got some hard choices to make. But it sure makes my situation seem easy.”

  Susan stops to take a breath, then dips her hand into her coat pocket. Feeling rattled and anxious, I fully expect her to whip out a spreadsheet charting the statistical potential outcomes of my bleak future, but it’s only a tissue to wipe her nose. Nothing to worry about.

  A few days later, early in the morning, Susan’s husband drives her to the hospital. I hear their car pull out from the lane and I wave bye-bye to her “boobs gone bad.” That’s what she called them: boobs gone bad. Like Thelma and Louise, driving off a cliff—the final escape. By the time lunch rolls around, Susan is in recovery, tripping on morphine, sporting a pair of synthetic tits. And Bergen and I are thinking of her while we drive down the hill, toward the ocean, on our way to visit the Answer Lady.

  Like many CBC fans, I first knew the Answer Lady as a feisty disembodied voice on Vicky Gabereau’s afternoon radio show. Inquisitive listeners would mail in their quirky questions, and the Answer Lady, whose real name is Marg Meikle, would conduct exhaustive research on the various subjects. Then she’d triumphantly appear on the show, telling Vicky what she’d learned. The on-air banter between the two women was always entertaining and sometimes piss-your-pants funny. She went on to publish several books, and then, when Vicky’s show ended, the Answer Lady fell off my radar.

  A few years later, when I began freelancing at CBC, I wound up meeting Marg. She was doing some research for the show I was assigned to and joined our morning story meeting. Although I’d never seen her before, I knew by the way she spoke and fidgeted in her chair that something was wrong with her. Later that day, I found out she had early-onset Parkinson’s. Back then, I didn’t know much about the disease, but I knew enough to feel sad for Marg’s misfortune. And I knew that Parkinson’s was one disease I never wanted to get.

  Since that day, I’ve learned to be careful what I don’t wish for. I’ve also learned that Marg and I have a lot in common: we’re both artists, writers, and radio broadcasters. We’re both married and raising one child. And we were both diagnosed with early-onset Parkinson’s disease at age forty-three. If anyone could shed some light on life with this affliction, the Answer Lady could. But would she? I called her home to find out and spoke with her husband, Noel, who invited Bergen and me to drop by for a cup of tea and a chat later that week. And so here we are, knocking on the door of their heritage house, being welcomed by a bushy-bearded Noel. He leads us to the living room, and out of the corner of my eye I spot safety railings on the walls and along the staircase, a cane leaning against a door frame, and a metal walker next to a window. When I last saw Marg, six or seven years ago, she was managing quite well—walking unassisted, talking clearly, working on her projects. But I’d heard from mutual friends that her Parkinson’s had become quite severe since then. She’d had experimental surgery—deep brain stimulation—to help ease her debilitating symptoms, however the surgery hadn’t helped very much. So I had mentally prepared myself for this encounter. Or so I thought.

  My heart begins breaking the moment we say hello.

  “It’s been a long time,” Marg slurs quietly from an oversized chair.

  “It sure has,” I say, fighting back the panic rising in my throat as Marg fumbles with her personal remote control. When she finally gets a good grip, she clumsily aims the remote at her chest, presses a button several times, then mumbles that she just sent a message to her brain via an implanted electronic device. I can feel my Cry Lady cringing inside, aching to crank out her tears. But somehow I stay calm, and the four of us start talking. There are so many questions I want to ask Marg, but first I need to make something clear.

  “Even though one neurologist just diagnosed me with Parkinson’s,” I say, “I’m still not 100 percent convinced I have it. That’s why I’m going to see another neurologist in a couple weeks; he specializes in Parkinson’s. To get a second opinion, from an expert.”

  No one says anything for a few seconds, then Marg leans her rigid body forward in her chair, looks me straight in the eye, and slurs, “Oh, you got it, all right. You got it.”

  Her words sting like icicles plunging into my flesh. I desperately want to cling to my speck of doubt, but I can’t escape this feeling that I am staring at my future and Marg is staring at her past.

  “What makes you so sure?” I sputter.

  “It’s the eyes, how starey they are. And the face, hardly any expression. And the body, stiff, slow, and tight.”

  I try moving my mouth into a smiling shape, to politely mask my shock, but my face feels frozen, locked in place. At least I can blink. Yes, that I can still do.

  But I can’t stay here very long—for my sake or for Marg’s. So I rattle off my questions, and within an hour, my mind is swimming in advice, opinions, facts: “Parkinson’s affects everyone in the family.” “Find a good neurologist who makes time to see you.” “Support groups are depressing.” “Your pharmacist is your best friend.” “Qualifying for social assistance is difficult.” “Massage therapy is a waste of money.” “Parkinson’s causes constipation.” “Clinical depression comes and goes; get help when it’s severe.”

  Before we leave, Noel gives us a tour of their spectacular kitchen. A giant granite island sits smack dab in the middle of encircling custom cabinets, workstations, and appliances. Fren
ch doors open onto the backyard garden. And next to the doors is a cozy sitting area, with couches and chairs and a compact computer nook. Perfect for entertaining. In fact, they are hosting a breakfast party in a couple weeks and would love us to drop in. It’s a fundraiser called Porridge for Parkinson’s. They do it every year. And they’ve inspired other people across Canada and the United States to hold such an event. So far, they’ve helped raise over $500,000, money that goes directly to funding research into a cure for Parkinson’s. We thank them for sharing their insights and experience with us and promise we’ll drop by for a bowl of porridge.

  Bergen and I are both silent during the drive home—thinking and trying not to think about all that was said. Especially Marg’s pronouncement: “Oh, you got it, all right. You got it.” Maybe not the warmest welcome into the Parkinson’s community. But certainly an honest one, from a generous family, coping with a devastating disease.

  THE EARLY-MORNING SKY is a silver-gray reservoir of rain. It straddles the city and sits tight, still, pensive. The forecast calls for showers, but it hasn’t spilled a drop. It’s considering its options—something I’ve been doing a lot lately too. For instance, should I keep struggling with these stupid shoelaces or invest in Velcro runners? Is it better to boycott buttons or ask Bergen to help me do them up? Should I learn voice-recognition software or carry on typing with only my right hand? If the second neurologist diagnoses me with Parkinson’s, should I shoot him or get a third opinion? These are some of the many options on my plate. What to do, what to do? I’m not usually so indecisive. But having only recently discovered that pride really is hard to swallow, I have lost my appetite for making decisions.

  By midmorning, the sky is stalling—still considering its options. This monotone holding pattern feels familiar. I want to crawl back into bed, escape into sleep. Keep the world and its evil shoelaces and backstabbing buttons far, far away. And if it weren’t for my grumbling tummy, that’s exactly what I’d do. But apparently, I still have an appetite for food, and breakfast is beckoning.