Leg, p.2
Leg, page 2
About that limp . . . It wasn’t until I left Utah for college in Chicago that my secret case of cerebral palsy started catching up with me, a stalker lurking in the shadows of my every thumping step or spastic gesture. In that era of great reinvention, I was paralyzed—sometimes literally—at the prospect of having to make so many first impressions. A lot of the time when I tried to talk to someone my leg muscles would tighten up, my toes writhing in my shoe. People would ask me why I was wincing and I wouldn’t be able to explain, not really. Nor would I be able to get away. I spent every bit of my social energy making sure no one saw me walk or move awkwardly. It was futile. “Do you have cerebral palsy?” an acquaintance asked when he saw me try to put on my coat. “What? No? My jacket’s just a little small.”
Even now, I’m not sure if he was being intuitive or bitchy. The guy had two thumbs on one hand and a crush on me, so I’ll go with the former. Just recently, it got back to me that the first dude I hooked up with at Northwestern called me Peg Leg Greg to his roommates. Now that I’m on more than a nodding acquaintance with my weakest appendage—my dear leg turning, over the years, from stalker to fellow traveler—I find it sort of funny that my first name should rhyme with the biggest mystery of my life, but had I known of this little sobriquet at the time I would have been devastated. I remember asking my mom if it would be easier if I did just have a fake leg, something I could explain with knock-on-wood swagger.
If anyone asked if I was limping, I’d tell them it was just the old tight tendons, attempting to field queries in an unconcerned midwestern fashion that was the opposite of how I felt. I also didn’t have another answer because the real answer, the truth, had never been shared with me.
I uncovered my secret case of CP in 2014 while applying for health insurance. I’ll get into that shortly. For now, let’s just say I found myself, at almost thirty, skipping past the need to forgive and going straight to feeling ravenous for more information. For weeks afterward, I alternated between a state of woundedness and acceptance as I jerked myself around town by my hair, pointing out the world’s unfairness: cracked sidewalks, uneven stairs. Google taught me addictive new catchphrases like “spastic” and “ableism.”
“That’s ableism!” I told my then-boyfriend Lucas. (I’d later convert him to Husband, top him for the first time after a Renaissance fest, and write about it for the internet—you really should keep reading this book.) I made Lucas film me walking in our parking lot, seeing how I moved from the outside for the first time. I cringed the way you do when listening to a recording of your voice, not because it’s so awful but because it’s yours: the scraping toe, the bent knees, the hitch in my step that suggested the way people hoof it in old films, smiling self-consciously. I re-watched the episode of Breaking Bad where Walter teaches Walt Jr. to drive, this time teary-eyed. I looked up Geri Jewell, the first actor with CP to have a recurring role on TV, and fantasized about showing up to the Planet Fitness where I pounded away on the treadmill in one of her famous pink T-shirts, the kind she’d worn on The Facts of Life: I DON’T HAVE CEREBRAL PALSY I’M DRUNK.
“Think about it, Lucas,” I’d say. “Some hot, normal person walks into the gym wearing that shirt? Everyone’s mind would be blown!”
“Or maybe they’ll finally get why you almost die every time you run on the treadmill,” Lucas posited, trying to shake me out of three decades of denial.
It was like that for a lot of my body’s foibles: I shimmy my shoulders when I have to poop; my hands and feet are always freezing and yet at outdoor concerts I get so overheated I have to wear a cooling vest like a distraught rescue dog; prone to panicked forgetfulness, I constantly slap my pockets whenever I’m out of the house to make sure I didn’t forget my wallet or phone; anytime I’m nervous or out of sorts, my limbs start shaking hard enough that I can barely fire off a text.
The “spastic” of spastic cerebral palsy comes from the Greek spastikos and means “pulling,” i.e., the “pulled” muscles in my legs that restrict my movement. “Pulled muscles!” I proclaimed. “Like tight tendons!” I contemplated giving myself the Twitter handle Spasticus. Like Spartacus, get it? Fortunately, Lucas intervened.
Spastic as a noun is an out-of-date slur for a person with CP. By the time I was a teenager, we’d shortened it to the much catchier spaz, a slight so common you can find it in the first entry of my seventh-grade journal, where I describe my brother as a “blast” and “overly energetic.” “He is a spaz, but that makes him both hilarious and rude/mean.”
So, what does it make me?
Anyone who has ever had to come out of any closet knows how twisty the path can be, and I suppose that’s partly what this story is about: prickly questions about passing and privilege, obsession and denial, the parts of our identities we hide and those we claim and what it means to transform when there are things about ourselves we can’t change.
For now, let’s just say discovering the fact of my cerebral palsy has made me see my life, and my leg, with renewed appreciation.
My leg.
Contrary to college gossip, it never sailed the high seas in search of a whale, the prelude to a captain’s wooden appendage. It didn’t graduate summa cum laude or hike the fjords of Norway, or fight Nazis, or win a gold medal in rhythmic gymnastics—catching a ribbon between its spazoid toes—but it has swung and lifted and climbed. It’s trotted along in theater tights and stood contrapposto at concerts. It’s survived surgeries and trembled beneath first kisses and fucked its way through the former Yugoslavia and bent in prayer. It’s dragged after me on the tennis court and even hobbled down the aisle toward a man with a mustache whom I’d topped after a Renaissance fest—in case you missed that part.
Leg is like a French farce about my body: the secret devotions, the fumbling intimacies, the tawdry jokes, the half-truths told in the name of love, and the family of unlikable assholes who stuck together through it all. This is a story about that little thing that has always bugged you about yourself, that thing you try to ignore that turns out to be the key to your entire existence. If Nora Ephron wrote this book, it would be about her neck. Because I’ve written it, it’s about my leg. It’s a wonderful leg and there’s absolutely nothing wrong with it and my mother did the best she could in spite of having five kids and cancer and a husband who died of fucking ALS.
I mean, a leg—nothing could be less abstruse.
NEXT WEEK: DEBI FIGHTS FOR HER LIFE
The community newspapers my dad owned in Utah, Idaho, and Washington covered stories so local you couldn’t find them anywhere else. This included news about my extremely nonlocal family. Mom published her weekly feature column among horoscopes and crossword puzzles, the school lunch schedule, new arrivals at the library, missionary announcements, who had sung what at sacrament meetings, even who had gone to whose house for Christmas dinner.
Life and death were the staples of her “Silver Linings” column, ordinary folks battling hard-to-pronounce illnesses with a steady diet of hope, joy, and a belief that the human spirit could overcome any obstacle. But the survivor Mom wrote about most often, the one who slowly came to dominate her coverage, was herself.
Shortly after my mom started writing the column, after nearly four years in remission from stage IV non-Hodgkin’s lymphoma, an enlarged lymph node popped up on her jaw below her ear, where she held her brick of a cell phone. Mom went in for a checkup with her oncologist, hoping she might have an infected wisdom tooth. After what turned out to be unnecessary dental surgery, she and Dad came home to tell us what she later described in “Silver Linings” as “the most dreaded word in the English language for a cancer survivor: recurrence.”
The enlarged lymph node was, in fact, a tumor in her parotid gland that made her cheek salivate when she was hungry or eating a particularly delicious Caesar salad. “Sorry, guys, but this dressing is to die for,” she’d say, dabbing at the yellow discharge with a napkin.
That Mom’s cancer should make its comeback about a month after she started writing the column was perversely perfect timing. “Silver Linings” was itself a silver lining, a place where she vented and told funny stories—and harrowing ones, too. She discussed biopsies, cancer-related root canals, Hickman lines, pulmonary embolisms, infected toenails, and drained tumors. “If you got it, use it,” Mom liked to say. A cute wooden sign nailed over the dining room table bore her Churchillian slogan: NEVER, NEVER, NEVER GIVE UP.
Mom was a former daily newspaper reporter with a master’s degree in journalism from Northwestern and a filing cabinet full of clips about rape trials and sudden infant death syndrome, but she avoided hard news in “Silver Linings.” She wasn’t only a journalist. She was a cancer survivor and the mother of five children. It said so in italics at the bottom of each column.
The picture of Mom that accompanied “Silver Linings” changed a few times over the years. The one I remember best was a glamour shot taken at Fashion Place Mall days before she started chemo that was soft-filtered so even in grayscale she glowed, jean jacket popped open, hair flowing over one shoulder. She was both too dressed up and too dressed down to resemble my animal-print-loving mom. In the context of the newspapers’ rural readerships, it was like she was trying to prove her hick credentials, implying that after she finished the column she might work the land instead of the baseline of the tennis court that sat in our backyard.
Particularly because Mom was the boss’s wife, the column could sometimes read like a family bulletin. Did subscribers in farm towns hundreds of miles away really care about us? All moms take liberties with the truth. The difference was my mom’s liberties were in the newspaper. Eight of them. In towns where we didn’t live.
Mom had a way of piling it on, of one-upping fate. One of the charms of “Silver Linings” was that every week was a fresh disaster, a new bad thing, another wrinkle in the fabric of our family. When these mini epics couldn’t be squeezed into a single column, like when my dad fractured two cervical vertebrae diving into the ocean in Hawaii, they turned into cliffhangers and were “to be continued.” Next week: Bob’s tragic injury threatens his life . . .
A typical column featured my mom going through tests to determine if she was a candidate for a bone marrow transplant, my preemie sister, Mona, flipping over the handlebars of her bike, and me sustaining a concussion during a misguided attempt at ice skating in Sun Valley. If major medical tests and two sporting accidents weren’t enough for one day of vacation, Mom sent the stakes soaring by writing that the night concluded with us witnessing a serious collision in which she cradled a teenage boy whose head had gone through the windshield. (In my memory, we’d only been rubberneckers told politely but firmly to move along.)
If the gussied-up headshot didn’t look like her, then the mushy articles didn’t always sound like her either. Despite her claims, Mom didn’t cry during Mother’s Day programs, thankful for the privilege of being alive, or seek the true meaning of Christmas in the beguiling words of little Mona, or find solace in crocuses poking bravely from the snow in the darkest of night. Though her wig had flown off on a rollercoaster at Knott’s Berry Farm, it hadn’t also fallen into a walrus tank at SeaWorld, leading her and Tiffany to take a stage bow to scattered applause.
Still, Mom made over-the-top inspiring. Her way of rendering life large put cancer in its place, making it part of our daily routine. It helped that Dad was always at her side, holding her hand through every doctor’s appointment, blood transfusion, and chemo, but that was Dad’s job: he toiled behind the scenes so Mom could bring sugar cookies to her chemo nurses, light luminaries, dedicate park benches to her fellow cancer survivors, and drive carpools wearing her NO HAIR DAY hat and then come home and conduct hours of phone interviews for her column at the foot of her bed.
On treatment days, my parents would push through the door after dark, a rumpled fortune teller in a bright headscarf and the good Samaritan who was kind enough to carry her purse. Dad would get to work on my math homework and Mom would crawl under their floral comforter and conk out for a day or two. I knew she was starting to feel better when her yellow legal pad returned to her nightstand followed by the clank of keys. Mom typed the way she played the Batman theme song on the piano in the living room, feet tapping, tennis bracelets jumping down her wrists. When she made a mistake, she deleted the entire sentence and started over.
Because of my gimpy leg, Mom pegged me as her apprentice from the start. I wasn’t a scuzzy jock (her words) like Tiffany or Danny, out there snowboarding and playing basketball and doing drugs. My limp was my gift to the world, or at least my gift to her column.
I loved having a writer in the family, almost more than I would have loved having a famous talk-show host. In my eagerness to prove myself, I’d interrupt with suggestions, employing vocabulary words I’d learned while dictionary surfing that rarely made sense. My prose tended to be flowery, even for Mom’s purposes, but she always made a point of trying it my way. “You’re going to change the world with your words, Greg,” Mom would say. “Now remind me again. What the hell does mollify mean?”
Much of what I’d come to understand about my mom’s first battle with cancer in 1992 is based on reading her column when I was a teenager. I was eight at the time she was diagnosed and mostly recalled insignificant scraps that didn’t warrant being written down: staying up late eating potato chips in my parents’ bed as I waited for them to come home from the hospital, never brushing my teeth, drinking four Cokes a day.
Mom purposely got an ugly haircut so she wouldn’t be sad to see it go. Then, a few weeks into treatment, she started shedding all over the house, like our Lhasa Apso, Annie. The night before Thanksgiving Mom and Dad invited us all into their bedroom. Seated on the carpeted steps to the tub, she told us to pull out her hair. Each strand represented a million dead cancer cells. The more we yanked, the more we killed. Years later in her column, Mom would portray this as a joyful moment but I remember being terrified. Once we’d gotten all but a few patches, Mom eased onto a candy-cane-striped chair, nervously flapping her legs as Dad drew a shaving cream D for Deb onto her scalp and went at her with a razor until her head shined.
Thanks to my second-grade teacher, a Germanic woman who would go on to work in women’s prisons, I was obsessed with Roald Dahl’s The Witches and thought my mom might be one. Mom was hurt when she modeled one of her new wigs for me and I told her it made her look like the Grand High Witch. It was a compliment!
Mom wrote about it all for her readers—cancer past and present—packing as much as she could into eight hundred words.
The first time she devoted a “Silver Linings” to me—and the only time I remember coming across the term “cerebral palsy” as a kid—was after my graduation from sixth grade, when I won a leadership award called the Hope of America. I say the award was for “leadership,” but I suspect it was for my colorful reading of the morning announcements over the school intercom.
When the principal called my name, my family bum-rushed the stage, my dad filming me trundling up to them in my giant Planet Hollywood polo shirt and baggy Mossimo shorts, the kind that happened to be in style and conveniently hid much of my scrawny right leg.
“As my son strode to the front of the auditorium of the ‘normal’ elementary school today, I thought my heart would burst from my chest, sprout wings, and fly around the room propelled by pride,” Mom wrote. “The boy who was supposed to spend his life in diapers, in a wheelchair, wore a grin which spread from ear to ear as he accepted the framed certificate.”
My childhood would have played out differently if my mom had come right out in her column and written that I had spastic cerebral palsy related to prematurity. That was why doctors thought I might not talk or walk or use the toilet. Instead, Mom brought up this diagnosis along with polio and retardation only to dismiss them all. Incontinence? Wheelchairs? A merely normal IQ? That wasn’t my life—I just had tight tendons. (Also, to linger for just a moment longer on this . . . polio? In the mid-1980s?)
Rereading the column now is a study in maternal deflection and misdirection. Like a carnival psychic, Mom highlights super specific details like my birth weight, four-and-a-half pounds, only to get foggy when it comes to other foundational medical facts. She mentions CP right up top to refute that I have it, not to disclose that I do. A few paragraphs later, you can feel her edging up to the point of revelation and turning away:
The early struggles associated with low birth weight seemed paramount, until he attempted to walk. Relentlessly we dragged him from doctor to doctor, looking for someone who would tell us everything was fine. When that diagnosis never arrived, we decided to fight.
“Everyone has some kind of challenge, Greg,” we’d tell him. “There isn’t a person alive who doesn’t have some kind of obstacle to overcome. You can spend your life feeling sorry for yourself, or you can work with all your heart and all your soul and learn to walk. You can become someone the world looks up to.”
That was the truth as I understood it, the lines I heard whenever I asked about my leg.
The story Mom told her readers about the callous doctors who predicted I’d never be able to walk or express myself verbally, who said all sorts of horrible things about me, was as familiar as my own memory. So was the part where I proved them all wrong. The part where Mom and I learned to harmonize to Beach Boys songs on the drive to physical therapy twice a week. The part where Dad strapped me into casts at night. The part where I braved the surgical table to stretch my tight hamstrings and Achilles tendon so I didn’t walk on my toes. “Instead of a child with a disability,” Mom wrote, “he became a child with a quick wit and an incredible sense of humor.”
I read the last paragraph of the column so many times I developed an eye twitch:
Greg is my hero. He could have chosen to go through life concentrating on all the things he can’t do. Instead he focuses on what he CAN do. His worries don’t include walking with a limp. His concerns are those of any 12-year-old kid: the first hint of acne, a lousy score on a math quiz, and hoping the girls notice him some day. He hasn’t given his “challenge” in life the power to become a problem.
