Leg, p.20
Leg, page 20
After every terrible update people concluded, “But we’re hanging in there.”
When it was Dad’s turn, he’d introduce us. Head down, my toes would crinkle in my shoe, making me wince and sit up straighter. I’d press a fingernail into the leather of Dad’s day planner so I didn’t have to look at everyone nodding like they understood.
Talking at a whisper was the equivalent of shouting for him now and I quietly noted his talent, even in his current state, for putting people at ease. He was still handsome, maybe even more handsome than he had been before he’d begun losing weight, and he could still make people laugh. “Like a dad from TV,” my friends called him. A dad from TV who’d never live to replace his AOL email or learn to pay bills online. I wanted to scream at all the families around the table just barely holding it together. This wasn’t a basement. It was a crypt.
“The feeding tube’s helping,” I said brightly. “But he’s having to spend a lot of time on the machine. I guess he’s been pretty air hungry.” It was funny sitting at a table in the refrigerated recesses of a church basement and summing up, in two words, how Dad would die: air hunger. He would suffocate slowly, breathe and breathe and still not get enough air. “But we’re hanging in there.”
At the end of the meeting, Dad would have me stay and fold chairs.
Getting ready for bed one night, he asked if I had any dates lined up and I got out my laptop and pulled up Cheetahboy’s profile. Cheetahboy was a mechanic from Ogden who had stood me up the other night. One of his pictures showed him in a tucked-in American flag shirt and a cowboy hat. In another, he was straddling a chair in his underpants.
“It looks like that guy has other intentions,” Dad said.
ALS had not stopped Dad from believing I’d end up with a great guy, not when I’d come into his room red-eyed and half-drowned from trying to join the gay swim team, not when the only guys who messaged me were forty-five-year-old Mormon dads on the DL.
Stretching Dad’s atrophied legs a little too hard, I’d bitch about how I’d never meet anyone who wasn’t a human AIDS germ or too stupid to construe a sentence. I was gay because I liked men, not because I liked bishops and little girls. (Internalized homophobia was as ingrained as my misuse of big words.)
Dad saw through my intensity and bitterness, saw that I was just a scared kid. He may have been on his deathbed, but he still considered it his job to call me on my baloney, to lift me up when it hurt too much to hope. I’d take off his BiPAP and he’d replace my moans with Gina Jones. “You’re going to meet a lot of interesting people,” Dad would say. “But the right guy is out there.”
Besides support group, clinic was our big regular outing that fall. It managed to be both subdued and nerve-racking, especially as Dad got closer to needing a tracheotomy. The medical staff would try to make small talk by asking what I was doing now that I’d graduated and I’d tell them, well, this.
Dad’s final visit before he went on a respirator is the one I remember best. In the waiting room, I thumbed through out-of-date magazines fanned out on the table until a nurse called us back to another, smaller waiting room that made me claustrophobic. I turned to the back of Dad’s day planner and quizzed him on our social security numbers and frequent-flyer miles.
A nutritionist came in and asked him to step outside so she could weigh him. I stayed in the exam room, avoiding a woman in a wheelchair. The woman was staring at the wall beside our door, groaning. The blanket wrapped around her had partially fallen off. What came out of her mouth was a jumble of sounds, impossible to decode. She covered one eye and then the other. It took me a minute to get that she was reading from an eye chart. All these years after my alumni interview with the engineer whose slipper had fallen off and I was still skittish around other disabled people.
Later, a respiratory therapist knocked on our door and popped her head into the room, greeting Dad by name. She clipped his nose shut and had him blow into an electronic spirometer, essentially a stopwatch with a mouthpiece that measured the strength of his breath. I stood there thinking, “Blow! Blow!”
“OK,” she said. “Good job.” She looked discouraged and told us what we already knew: Dad wasn’t getting enough air. It was nearly time for him to get a tracheotomy, a surgical opening in his windpipe, the kind I’d seen in anti-smoking ads.
Dad blew again.
I wanted to rip the spirometer from her and blow for Dad, the guy who had clipped my toenails until I was twelve and helped me put on socks. The guy who took me skiing and hiking and to play night tennis at the club. “Like this!” I wanted to say. “Do it like this!”
Another readout, another discouraging smile. She gave Dad a hug and hung his charts on the door.
I thumbed through the calendar in Dad’s day planner.
“How’s it looking?” he asked. Besides a birthday he’d filled in at the beginning of the year, when he could still write, the dates were blank.
“We can squeeze it in,” I said. I penciled in trach for the middle of November.
Dad struggled to breathe so much that fall he looked perpetually panicked, his newly bony shoulders jumping up and down. He had to take a break to catch his breath if he walked more than ten feet, and he spent more and more time attached to the BiPAP. His body was working so hard for oxygen, and the disease was so aggressively attacking his muscles, he became rail thin. Old man thin. Massive amounts of dandruff fell from his scalp and eyebrows and his hair was turning gray and falling out. It looked like he’d aged twenty years in a couple months.
Two days before Dad was scheduled for surgery, almost a year since our final tennis match in the bubble at the club, I walked into my parents’ room and found Dad panting on the edge of the bed. We tried taking deep breaths together. When that didn’t work Dad told us to call an ambulance. “Are you sure?” I asked, thinking, idiotically, of how expensive it would be. “We could just drive.”
The paramedics arrived a few minutes later. “Up here!” I shouted.
They tried to lay Dad down and I told them he couldn’t breathe that way. Instead, they made a chair for him out of two transfer boards and took him down the stairs and out to the ambulance. Mom and Danny climbed in after him. The sirens started up and Berkeley and Mazie whined at the back fence, the way dogs do when they hear a siren, like they’re calling out to a distant wolf relative.
I went upstairs and changed into a fresh shirt and jeans and drove Dad’s Lexus to the ER. I didn’t bother trying to keep the broken side-view mirror from thudding against the door.
When it was my turn to go back and see him, I pulled away the curtain and took in Dad’s bloodshot eyes, the tube down his throat. I had no idea why no one had put a blanket over him, why he was as naked as a corpse. The attending physician explained that he had been sedated before he was intubated. The tracheotomy would be performed in a few days, the breathing tube moved from his mouth to a hole in his throat beneath his Adam’s apple. I pondered that word, performed, like Dad were part of an act, the magician’s assistant about to be sawed in half.
In rehab, Dad’s roommate was even worse off. He wanted more and more morphine, already turning into a fiend. Either he’d skied into a tree or he’d hit a tree coming down the canyon after skiing. It was hard to piece together what was going on. His girlfriend didn’t say much. She just came and sat by his bed and tried not to cry, probably wondering how long she’d have to wait before she could break up with him. His family drove down from Idaho when he turned twenty-one and filled the room with balloons. Twenty-one. He was younger than I was.
“Why do you keep looking at that paralyzed piece of ass over there?” Danny asked. “You gonna go blow him?”
Living in West Hollywood after college had exposed Danny to plenty of gay culture, and his jokes about my sexuality made me laugh even when they shouldn’t. The truth is, we were all more relaxed with Danny around and glad to have him home. Together we turned caring for Dad into a buddy comedy, executing lifts and dips like gawky ballroom dancers and wiggling a tube down Dad’s throat to whisk away green mucus plugs like Ghostbusters. It helped that Dad was doing better on the respirator. Now that breathing wasn’t a struggle, the fear was gone. Christmas was just around the corner and his first words when he could speak were, “Ho, ho, ho.”
“Pretty fucking corny, Dad,” Danny said, trying not to cry.
Dad turned fifty-five that December. We didn’t bring him any balloons of his own but some still drooped around his roommate. I went to take a load off in the chair next to his bed and woke up a while later to the sound of his favorite nurse singing “Happy Birthday” in a creepy whisper. Tiffany and Danny were behind her, blocking their smirks with Starbucks cups. Mom was at Dad’s bedside too, bald and in her floor-length coat. She was singing along a little but when she saw me looking at her, she put two fingers to her temple and pretended to shoot herself in the head.
***
For Dad’s homecoming on Christmas Eve, we wore Bob shirts: I’m with Bob, Bob’s Babe, Bob’s Son, Bob Almighty. We’d converted Tiffany’s childhood bedroom into a kind of triage station for Dad. At some point over the years, Tiffany had ditched the grungy snowboarder vibe of her teens for Tommy Hilfiger, turning her room from a Petri dish into a patriotic demonstration. Even the pillows shone red, white, and blue. Stars and stripes cascaded down the wallpaper and behind the furniture, skipping among pillows and bedsheets.
Since Dad couldn’t really go out at night, these were the only stars he would ever see again. I’d lower the railing of his bed and make him scoot over when I was on night duty so I could lie next to him, the anti-bedsore air mattress shifting under us, and pick out shapes in the plaster of the ceiling or connect the dots of a new set of constellations, not the Big Dipper and Canis Major but the darkened outlines of stuff around the room: La-Z-Boy, Oxygen Concentrator, Respirator, Flat-Screen TV.
Mona’s martial arts teacher, Mr. Arishita, commissioned his classes to make hundreds of paper cranes for my dad that now dangled against one wall from fishing wire, swaying to the whoosh of the respirator. Marathon medals clanked from a row of nails behind his bed. Looming above the bed was a portrait one of my high school friends had drawn of Dad running the St. George Marathon two years earlier.
For as much as we worried about mucus plugging Dad’s airway or his inner cannula popping out, it was comforting having him home again, within earshot of Moe banging on the piano in the living room and the dogs scrambling on the hardwood floor in the kitchen. The whoosh of a respirator replaced his snore, but Dad was still Dad, just hooked to a machine. I was still me, maybe more now than I’d ever been. After the lonely years of college, I was out of the closet and I had my family back, even if that family was falling apart.
For Dad to talk, you had to deflate his cuff—the bubble at his neck—so air could pass over his vocal cords. That’s when I’d plop onto Dad’s bed and set upon him with a cheap microphone plugged into the jack of my third-generation iPod. I wanted to record our conversations, apparently so I could know, years later, how vulnerable and clueless I sounded in my early twenties, how I misused big words and called everyone, even people my age, a “kid.”
“What were you saying the other day about how you used to be able to go to the bathroom with just a cup of coffee?” I asked as he hunched on the commode, the mic an inch from his chapped lips. “You were saying on Christmas you’d rather have Lou Gehrig’s than be hit by a truck or have a heart attack. Can you explain that?”
Danny interrupted these self-serious interviews by pulling out a digital video camera and shouting questions about first kisses and early sexual partners, all the stuff you’d really want to know. Meanwhile, I had a knack for poking at the wasp’s nest of the ineffable. I smoked pot only occasionally, maybe two or three times a year, but to listen to these voice memos you’d think I was a hard-core stoner. “What does it feel like to be alive but not breathing . . . by yourself, I mean. Are you still alive right now?”
“I’m still alive,” Dad would moan.
I wanted to know if Dad had Lou Gehrig’s in his dreams, what it felt like inside his body, and if he thought of himself as innately disabled or if he saw Lou Gehrig’s as an outside condition inflicted upon him, a leading question if ever there was one. “Has ALS changed your ability to focus at all?” I asked. “Like when you’re moving your foot do you forget you moved your foot?”
“It’s more how long I can keep a list of things in my head,” Dad said.
“Does that mean you can’t listen to me talk for the same amount of time?”
I might duck out of my line of questioning with a joke, but my inquiries were more than idle philosophy. They were a cross-examination of my own subconscious. Dad had a condition that couldn’t be pushed aside or minimized and in asking about his struggles I was hoping he would tell me about mine. I don’t mean that I expected him to wail, “We lied to you all these years, Greg. You don’t just have tight tendons. You have cerebral palsy. Look it up! You’re disabled.” For one, I still had no idea I had cerebral palsy. For another, my dad wouldn’t have seen me as disabled any more than he would have seen me as being gay before I came out. It just wasn’t a nice thing to say about someone you loved. What I wanted was recognition, for the silent part to be said out loud, not dwelled on or pitied but explored.
Dad gave me backrubs with his feet and relayed wordless zingers with a raised eyebrow and a downturned lip. When I came home with a tattoo still bloody and Saran Wrapped on the underside of my left bicep—the Roman numeral seven for the seven people in my family—Dad told me he wanted one too: a butterfly on his butt. He didn’t mention what I’d only realize after the fact, that I had essentially put a symbol meant to honor my family in my armpit.
To keep his legs strong, Dad would walk with Danny and me down the hall, one of us pushing air into his lungs with a tracheotomy bag, the other with a hand on his gait belt. We learned to synchronize our breathing, inhale and exhale together to keep the bag from popping off or from pumping too much oxygen into him. “And here’s my room,” I’d say. “You remember my room.”
It was eerie at first to disconnect Dad from the respirator and leave the machine beeping, the readout of his vitals flatlining, his bed empty. The days of Dad hopping in the car or on a plane, going skiing or running or hiking were gone, as was the time for teasing him about having no neck. The wasting of his muscles made him a little pencil-necked, actually. What once seemed like a solidly fused slab of vertebrae was now frail and skinny.
Dad and I were doing his stretches one day, my fingers wrapped around his heel, the pads of his toes pressing into the underside of my arm, when it occurred to me that my handsome left foot was almost identical to his. It was even the same size: eleven or eleven-and-a-half depending on the shoe brand. The family resemblance didn’t extend to my right foot, with its narrow heel and bunched toes, but one matching limb was enough. I’d been walking around on Dad’s foot my entire life and not known it. I’d keep walking on it after he was gone.
HEAL THY ANGELS
I’d only known Kevin for a couple weeks when my mom walked in on us having sex. It must have been jarring for her to see a bald thirty-one-year-old Mormon dude thrusting into her physically disabled youngest son. Then again, only moments before, looking for someone to help get Dad out of bed, Mom had taken the new elevator to the basement and folded back the accordion door to see my brother having sex with a girl who had once been my dance partner at cotillion. If death is the opposite of desire, our house had plenty of both.
Privacy was nonexistent. The respirator was always going off down the hall, and if it wasn’t the respirator it was the doorbell Velcroed to the base of Dad’s Medicare bed. His ski buddies, running buddies, and former co-workers came and went without knocking. They hadn’t seen me in the throes of intimacy, but they had seen me afterward, stranded in front of the fridge in my boxers.
That winter had been snowy and bleak. Mom was struggling to mend from a round of “big guns” chemo and Dad’s legs were getting weaker by the day.
After a brief stint selling day planners at the mall, I’d gotten a job that March as a community newspaper editor thirty miles up the canyon in Park City at the Park Record, but in the larger scheme of things I’d fallen off what you might call the accomplishment horse—the accomplishment horse, the mechanical bull, the rainbow phalluses of Boystown, and anything else a young gay man with tight tendons might want to ride. Before Kevin, I’d been as celibate as celery.
I met him one soggy Saturday in April while judging packets at the Utah Future Problem Solving Bowl. FPS is one of those after-school activities for teenage nerds, a mix of a sci-fi convention and a debate tournament, with kids running around in crushed tinfoil costumes, dressed as genetically modified produce, developing nations, microchips, nanobots, and splices of DNA. I’d done FPS from the fourth grade until I was a sophomore in high school, coming back as a judge for most of college and now beyond. I was cool like that. Needless to say, Kevin was the first guy I’d ever picked up at an FPS conference. I liked the hole in his jeans.
Though Kevin was eight years older, we had a lot in common. We’d gone to the same junior high and high school. Not only had we both competed in FPS, we’d also had the same coach, a vegan with a Chihuahua named Atilla. Kevin was an FPS legend because his team had won first place at the international conference in 1990, when he was in the eighth grade. The closest I’d ever come to winning was top ten.
Now we were no longer imagining the future and its problems. We were in the thick of them.
Dad had a talking computer he could supposedly control with his eyes, but it more closely resembled the Speak & Spell we’d had as kids in the eighties than Siri and Alexa, who would debut a few years later. Danny had programmed the computer to say only dirty words and phrases. To move the cursor, Dad had to wear a reflective dot on his forehead, like a bindi, that fell off constantly. We mostly just depended on reading Dad’s lips and deflating his cuff so he could moan out a few words. Even though breathing wasn’t a problem with his respirator, the rest of Dad’s symptoms progressed rapidly.
