Leg, p.19
Leg, page 19
We rode the ferry back to Split without sharing so much as an earbud. Tyler didn’t come to bed that night, one of our last at Hostel Spinut, though I could hear him drinking and carrying on down the hall. In the morning, he barged in reeking of wine in a toga bedsheet, dressed as Diocletian.
Over the next two days, as we half-assed final papers on lab computers and packed, a new vagueness about the future set in. I was doing a newspaper internship in Tucson in the fall and, nautical innuendo about ship knots aside, Tyler didn’t want to be tied down his senior year. You couldn’t say we were breaking up, just that we were balkanizing, dividing back into sovereign entities. Like Yugoslavia, we weren’t built to last.
Rather than keep it as a souvenir, I chucked the last of the Cetaphil in our small, cylindrical wastebasket and spent the hours before my flight chugging apricot juice and listening to the Garden State soundtrack as I wandered Fruit Square and rubbed the toe of the Ivan Meštrović statue. My leg had to be the cause of my lackluster performance in bed, the reason I was always falling all over myself, making excuses when I should have been making love. It just couldn’t leave the rest of me alone. It had to spoil every adventure.
It had only been a couple days and I already missed kissing him.
The lights were off in our room when I went to get my bag. To my surprise, Tyler was waiting for me in the lobby when I came downstairs. And were those tears in his eyes? He must have missed kissing me, too, because that’s what he did, right there in front of everyone. Even Frank got a little misty as we nastily made out. After a good minute or so, I pulled back and put my hand on Tyler’s puckering deltoid, where he had been talking about getting a tribal tattoo once we were back in the States. “You were the freshman experience I never had,” I squeaked.
“It was a blast,” he said. He told me to keep my smile bright and my skin clear and then I limped proudly out the door, tugging my bag behind me.
Why was I so bummed to say bye to Tyler? Probably because I figured six weeks of unsafe sex in a foreign country was as good as it was ever going to get for me. Compared to whatever awaited me in the coming months of my gay toddlerhood, what Tyler and I had didn’t seem too shabby. The world was so big that summer and my boy trouble so comforting and normal. Then I boarded a plane and Croatia shrank to the size of a scale model, something I could accidentally wipe out with a single toe drag. I guess that’s what people mean by “experience.” You come, stay for a while, and leave with nothing but a poem about a fisherman’s wife, a bag of dirty clothes, and a feeling.
OUR LEFT FOOT
While I was navigating the ups and downs of the college dating scene—poking around Manhunt.net, doing poppers with my roommate Katie, having a guy I’d been seeing cheat on me in a bathroom stall at O’Hare—Dad began an adventure of his own: long-distance running. Now in his fifties, the guy lived on swag-bag gel packs and in bright marathon shirts. Danny and Tiffany and I accompanied him in 5ks and 10ks. When it came to marathons, though, I was strictly spirit team.
The fall of my senior year, after qualifying for Boston, Dad decided to enter the Chicago Marathon. Honored he wanted to run in the city where I was living, I took the El into the Loop and waited for hours so I could high-five him as he jogged by. The weather was glacial and after taking pictures around Buckingham Fountain we all needed a post-race soak in the hotel pool to warm up. It was the indoor kind with a metal bottom, like swimming inside a tin can. Dad had lost a lot of bulk in his chest and arms and a muscle in his shoulder wouldn’t stop twitching. His internist had said it was probably the result of a potassium deficiency but nevertheless referred him to a neurologist. My siblings and I took turns in the pool pressing our fingers into his chest. “Stop,” we said, speaking directly to the trembling muscle. “Just stop!” It didn’t listen.
In late October, I came home from class and flipped on the TV in the living room of the filthy apartment at Ridge and Davis where I was living with three roommates and a Boston terrier. I caught the end of a segment about the golfer Tom Watson and his caddy, Bruce, who had died of a rare neurological disorder, Lou Gehrig’s disease, also known as ALS. This was years before the Ice Bucket Challenge and I’d never heard of it, not by any name.
My parents called a few minutes later. Mom was sobbing so hard I couldn’t understand her but Dad was his usual mellow self, saying he was sorry for bugging me, asking about classes.
“Classes are fine. Why does your voice sound scratchy?” I asked. “And why is Mom losing her shit?”
“We had Stana’s chicken soup last night and I choked on a bone,” Dad said, referring to one of our Polish cleaning lady’s specialties. In addition to bone-in chicken soup, Stana’s other go-to dish was a potato salad whose main ingredients were mayonnaise and eggshells.
“Is that why you called?” I asked. “Because Stana tried to murder you?”
Dad managed a mirthless, gruff laugh. “It sure wouldn’t be the first time. But unfortunately, no . . .”
“Dad has Lou Gehrig’s disease,” Mom screamed, breaking into a fresh whimper.
“For real, Dad? I was just watching a segment on ESPN and . . .”
“Don’t you get it, Greg?” Mom interrupted. “Dad is going to die.”
After hanging up, I called Katie. She came back to the apartment and we looked up everything we could find about Lou Gehrig’s, all of it sounding bad: orphan disease; no known treatment, cause, or cure. It was bizarre to hear Dad report his fate in a voice not his own and I clung to the idea that a mistake had been made, that Dad would be spared, that, as his strange voice implied, this was happening to someone else.
No such luck. The twitch in Dad’s shoulder was a fasciculation. A common early symptom of ALS, it’s the product of nerves and muscles that aren’t communicating properly. Not every muscle in Dad’s body would twitch like that, but they’d all waste away. Mom was right: Dad was toast.
Even after the worst Google search of my life, I didn’t imagine Dad’s arms would soon go limp and that, when he went to take a breath, his diaphragm would be about as useful as an airless whoopee cushion. Anyone who has had his childhood pulled out from under him is lucky enough to have had a childhood in the first place. Still, the prospect of being a caregiver left me drained. The man I’d always taken for granted would need me to turn the pages of his newspaper, answer his phone, type his emails, get him Hot Tamales from the candy dispenser after eating out. He wouldn’t even be able to shoo away flies.
Dad and I played a set of tennis in the bubble that Thanksgiving. During one point, he flubbed a backhand, got jammed up, and tried to use two hands instead of one to carry the racket across his body. I’d never seen him struggle to do anything physical. “Dad,” I called across the net, trying not to sound worried. “Are you doing OK?”
I beat him by an unprecedented margin, 6–2.
“The racket felt like it weighed a ton,” Dad said with a baffled smile.
“Really?” I shook his limp hand. “I didn’t notice a difference.”
We thought Dad might live for years with ALS. A lot of people do.
ALS didn’t follow the script we’d learned from cancer. Mom always said life went on after the Big C, but it didn’t with ALS, not for long. Maybe that’s why there weren’t cool nicknames for it like the Big C. People who got it died, left you an orphan. Lou Gehrig didn’t care about the Marshalls’ wacky, dark sense of humor, self-absorption, or ability to whip up a poem or a silver lining. For once, we couldn’t just roll our eyes, make the jerking-off motion with our hands, and tell ourselves Mom was probably making it all up anyway. In a matter of months, Dad went from being the guy who never got sick to one who had a date with death. Our grief wasn’t just for Dad but for the sense of order and calm he brought to our lives. Once you stop believing everything will be OK, the world takes on a pallor, and then you do.
One of Dad’s first acts as a dying man was to book us all on a Mediterranean cruise in July after I graduated from Northwestern. If Mom’s slogan was NEVER, NEVER, NEVER GIVE UP, Dad’s was ALWAYS BE TRAVELING. The cruise was both our final family vacation and Dad’s last chance to drink wine before getting a G-tube put into his stomach. You’d think the G would stand for gastrointestinal since it is essentially a bong delivering Promote and water directly to the belly, but it turns out the G is short for gastronomy. It sounds sort of French, un tube de gastronomie.
My natural inclination is to recall the uncomfortable parts of our sea voyage: dancing with Tiffany and Danny to the Pussycat Dolls’ “Don’t Cha” in the ship’s nightclub, trying to run on the treadmill during a sea squall, getting crabs. But there was all the good stuff, too. It’s the exception in life when you know you’re doing something for the last time and can really savor it but that’s what cruises do best.
Our last family trip was so full of finality it became a running joke: Dad’s last towel animal left on the bed after turndown service, the last dinner roll he’d see Moe throw at Mom at the banquet table, his last flaming Baked Alaska for dessert, his last mediocre magic show in the ship’s theater. Even with the tacky pomp of a cruise liner gliding into Venice at sunset blasting Pavarotti’s greatest hits, I’m not sure I appreciated how precious our time was, how much I’d miss it once it was gone. At twenty-two I was grown, but barely. We’d had such little time to know each other as men, Dad and I. It was a loss I felt more acutely for not having come out of the closet at fourteen in France. Why had I been such a little moutard?
The cruise ended in Barcelona and we spent an extra week at a hotel on the beach. Dad had always been an early riser, and on the last leg of our last trip together I’d get up with him and we’d walk the shoreline as the sun rose.
Once we were home, our days weren’t filled with sightseeing and sand but with clinic appointments, an ALS support group, and a breathing machine called a BiPAP that had to be refilled like a humidifier. The mask was so ill-fitting it rubbed the bridge of Dad’s nose raw, leaving behind an acne-bright scab. He slept on a firm wedge of a pillow with other pillows tucked under each arm and that new G-tube pinned to his shirt, his existence a blunt reminder of physical need.
“This isn’t drama class,” Mom told me after I made a face helping him blow his nose.
Out of a mix of frustration and exhaustion one day, I told Mom I couldn’t spend my life wiping Dad’s ass. I told her his body grossed me out, that it was disgusting. It wasn’t true and Mom and I both knew it.
“Dad has a beautiful body,” she said. “It just doesn’t work anymore.”
Since the start of college, Dad and I had gone on hikes together. It surprised us both, I think, the fact that I had inherited his love of the outdoors. Dad was too air hungry to hit the trails in the weeks after our family cruise, but one afternoon we took a scenic drive up the canyon near our house and brought along the BiPAP just in case. Parking on the side of the road, we walked a few feet to some wildflowers. I had forgotten to bring anything for us to sit on, so we lowered ourselves awkwardly onto some sharp rocks. I’d never seen Dad looking so gangly and long-limbed, so much like me. He must have been thinking along those same lines because he said, “I’m starting to get a sense of what it must be like for you with your leg. It just never goes away, does it?”
I hadn’t assumed Dad would understand what it was like to be disabled. It’s not a feat of empathy a lot of fiftysomething men would have been capable of back then, especially not with their gay sons. I’d always taken his good nature as a form of absentmindedness: Dad the space cadet, who could gently guide me down the ski slopes while I swore at him and then come home and singe his eyebrows lighting the grill. What I didn’t see is how generous he could be, extending his failing body to me like a form of communion. Don’t you see it now? he seemed to say on the rocks that day. How alike we are?
I’d watch in the years ahead as most of Dad’s ski buddies hung on to fading notions of their former selves, keeping the shaggy hair and bushy beards as long as they could, wearing short shorts that showed off their wrinkled thighs and knee-replacement scars, treating even major health catastrophes as minor setbacks that would barely delay their backcountry treks. “Got in a hundred days on the slopes this year,” they’d proclaim, fiddling with wristwatches that measured the distance they’d skied in vertical feet, like that wasn’t the most moronic thing ever, and exactly what my dad would have done in retirement.
In acknowledging my leg that day on the mountain, Dad had found a way of guiding me onto a new path of inquiry when he should have been his most frustrated and angry. There was some of that, too, of course—sardonic jokes about his G-tube (“Filet mignon tonight, again?”) or moments of pique when he’d get trapped in the bathroom while clearing out the small office he rented near our house—but Dad had a way of acting out of loyalty and love even in the worst of times. I’d wanted to distance myself from him all those years ago in France. Now, I only wanted to protect him. Don’t quitte me, I’d imagined singing to Dad. Even at my crankiest and gayest he never had. I wouldn’t quitte him either.
My siblings and mom might tell a different story—five different stories, in fact—but for the dog days of that summer it felt like Dad and me against the world.
Mom was embarking on another round of chemo and was overwhelmed with grief.
Tiffany had bought a house fifteen minutes away in Sugar House and moved out. Retired from competing in half-pipe snowboarding, she now worked at Fidelity and wore all-black except for a pair of gold-clasped pirate boots that jangled when she walked.
Danny was living in Los Angeles. He had a job in corporate communications, an apartment off Sunset Boulevard, and a college relationship to keep alive. No matter how much Mom or I guilted him, he wasn’t coming home until he absolutely had to, which ended up being in the middle of September.
And the little girls were still just that, little, though in fact they were well into their teens.
That left me. A scary thought.
I worried I’d be too butterfingered to help Dad button his shirt or zip his fly. I worried I wouldn’t be able to lift him in and out of bed or that I’d drop him. I worried I’d crash his car driving us around town. It wasn’t just the physical part that worried me, either: pouring cans of Promote into his G-tube, helping him shave with an electric razor or brush his teeth or blow his nose or put on his shoes or wrestle on his complicated BiPAP mask. It was the figuring-stuff-out part that overwhelmed me. I’ve never been good at puzzles, assembly, or following directions.
“This would be a lot less embarrassing for both of us if you’d just go insane,” I told him as I sorted through a bag of spare tubes for the BiPAP. “If you just weren’t in your right mind at all, I wouldn’t have so much performance anxiety.”
Before I moved home, my top concern was what it would be like to handle Dad’s penis. It was an understandable anxiety when you consider I had been out of the closet for all of three years when Dad was diagnosed. What if I were attracted to my own father, some kind of incestuous reverse pedophile?
Out of respect to my younger self, I don’t want to dismiss this worry out of hand, but it proved to be so at odds with the reality we faced that I unconsciously put it to rest. Bathroom stuff was mercifully unsexy. I’d pull down Dad’s pants and ask a question about the Jazz or the stock market and he’d opine from the throne, shaking off with a wiggle. There was a certain screwball logic to caregiving. To put on his Maui Jims, Dad would have me angle the sunglasses on the bathmat so he could squat down, prop his elbows on his knees, and scoop them onto his face with what strength remained in his biceps.
“OK, maybe you are insane,” I’d tell him, straightening the glasses on his face.
If my parents never questioned my ability to lend a hand, it wasn’t because I never messed up. The first time I helped Dad shower, I turned off the water to hunt for a towel. When I came back, he was shivering. “What’s wrong?” I asked. I didn’t understand his response. “What? Can you say that again?” This time he spoke clearly enough for me to get it: “I’m cold.”
He could have so easily diminished me or chewed me out. He never did.
I broke down one night in the sunroom, saying I couldn’t believe this was happening to him. When I went to hug him, I found that my leg was unwilling to let me to walk the few feet toward him. Dad made the journey for me and rested his chin on my shoulder, his arms Gumby-like at his sides. He felt so slight in my arms.
One of my responsibilities that summer was to chauffer Dad to the office or on errands in his Lexus. “Rex is yours now,” he told me, using his car’s nickname.
Like my driving skills, my car etiquette hadn’t improved since high school. The luxury sedan I’d once been scared to drive to prom was now brimming with old bowls of oatmeal and glasses of dried smoothie. I’d swiped off the side-view mirror backing out of a narrow driveway. It hung by a single thick cable. “Is Greg driving you around or did he move into your car?” Tiffany asked when she peeked inside. Dad was in the passenger seat among the mess, arms braced helplessly at his sides.
Our ALS support group was held in the basement of a church. It’s true we’ll all be disabled eventually, but the support group made this point with economy and remarkably little optimism. People would go around the table saying where they were from and why they were there. The real reason for showing up wasn’t solidarity but to scope out what was in store. The full spectrum of ALS affliction was usually present, and it was affliction. We came to see who could still use their hands or legs, who could speak or breathe independently, who had become a full-time wheelchair user since the last meeting. I wondered if, in some strange way, I was looking into not just Dad’s future but also my own.
