Home Is Burning

by Dan Marshall

  “Honestly, Dan, I would, but I always leave those meetings feeling ten times worse about everything, and I already feel like shit,” she explained.

  “Yeah, I know. They’re fucking depressing. I wish Dad didn’t want to go so bad,” I said.

  “Sorry I’m not coming. But, you know, have fun,” she said sarcastically.

  So it was just the four of us.

  I packed up the respirator. Anytime we left the house, I would also bring the following items:

  • One spare diaper

  • One spare change of pants in case the diaper and the aforementioned spare diaper didn’t do their jobs

  • One urinal

  • One joke about the urinal being some sort of sick cocktail mixer

  • One backup respirator battery

  • Wipes

  • An Ambu bag to be used if something went wrong with his respirator and we wanted him to continue to breathe

  • Suction machine

  • Something to write with

  • Pocketful of pretzels

  As we readied my dad for this adventure, Greg and I pledged that this would be the best ALS support group meeting ever. Lately, whenever anything went wrong, we would say, “Fuck Lou Gehrig’s disease,” but we figured that this field trip was going to be so wonderful and perfect that we wouldn’t need to say it. We got my dad up from his bed and into the elevator—which those fuckers at the Elevator Company had finally finished—with no problem, and only said “Fuck Lou Gehrig’s disease” two times: once when we almost dropped my dad getting him into his chair, and once when we accidentally drove the chair straight into the wall.

  After a short elevator ride down to the garage level, we pulled my dad’s chair onto the driveway and next to the Monster. I pressed the switch to deploy the lift. It didn’t budge. The van was broken. It was useless. All that effort to get it in Spanish Fork for nothing. I yelled, “Fuck Lou Gehrig’s disease!” so loudly that it seemed to echo through our quiet Mormon neighborhood, rattling its foundations.

  Getting my dad to the meeting on the respirator was proving to be a bigger hassle than I thought it would be. It didn’t seem worth all the trouble, even for the Capri Suns and for the hilarious period stories from Shawn. So my first thought was FUCK YEAH! We can’t go to the meeting! My second thought was Oh shit, Dad’s mouthing the words “Let’s just take the Lexus.”

  “Let’s just bake the dyslexic?” I responded, purposely misreading his lips. When his cuff was inflated, as it was now, we’d have to read his lips. He persisted, “Let’s just take the Lexus.” We couldn’t say no. He wanted to go, and we’d promised him we’d get him there. Plus, we had to learn how to take him on these field trips eventually. Every bit of practice helped.

  So Greg and I transferred my dad into a manual wheelchair that could be folded and stowed in the back of the Lexus. Then we transferred him into the Lexus, resting his respirator on the coffee-stained car floor and making sure we didn’t slam any of his tubes in the door. We were loaded. My dad sat copilot. My mom sat batshit crazy in the back, eating yogurt next to Greg, who hummed some Disney songs.

  I started to drive. It was then that, having already gone through a huge ordeal to get my limp father into the car, I came up with our entrance line. I always liked to have a line to enter the meeting with so everyone would start laughing and thus be distracted from my thieving of two Capri Suns. I thought the one for this meeting was brilliant: “We’re here for the cake.” Genius, I hoped everyone at the meeting would realize what a struggle we had gone through, seemingly just to get our hands on a free piece of cake. Greg and I began reciting the line. We practiced saying, “We’re here for the cake” in different tones and intonations. We joked that we ought to give each other bloody lips and black eyes to emphasize the struggle.

  “We’re here for the cake. That’s all. Just the cake. It’s a mere coincidence that our father has Lou Gehrig’s disease,” we joked as we drove to the meeting.

  We arrived at our destination. All the handicap spots out front were taken by the other fucks with Lou Gehrig’s disease, so we had to park in the back of the lot. I transferred my dad from the front seat into the manual wheelchair.

  I pushed him toward the building as Greg and I continued to think the “We’re here for the cake” line was the funniest thing in the world. We started reciting it in celebrity voices. Jack Nicholson. Owen Wilson. Bill Murray. Chris Farley. We approached the narrow doorway.

  Now here’s the part where we messed up. As we were reciting the line, now in Brad Pitt’s voice from Snatch, we misjudged the width of the doorway. Consequently, my dad’s respirator tubing—the shit keeping him alive—smashed against the doorframe. Two of the tubes cracked. We had brought the backup diaper but no backup tubes. No more oxygen for Daddy. “Fuck Lou Gehrig’s disease.”

  “BEEP. BEEP. BEEP. Boy, you REALLY fucked up this time,” said the annoying respirator, always reminding us of our screwups.

  We began bagging my dad with the Ambu bag—manually pumping air into his lungs. We were ready to turn around and end this catastrophe when Vince Junior, the son of Vince Senior, came out of the meeting and approached us. Vince Senior was now a five-year veteran of ALS and a three-year veteran of the respirator. Though his disease was at the most advanced stage of anyone we knew, he had plateaued and was now living comfortably. We were hoping to get my dad into a similar state, so Vince Senior and his family were sort of our idols. They were pros at managing the disease, while we were still amateurs.

  Vince Junior, a tall, strapping man’s man, looked us over and said, “What’s the matter?”

  “We broke my dad’s tubes,” I said.

  “Do you have any spares?” he said, talking about it as if my dad had a flat tire.

  “No, but I have some pretzels in my pocket,” I said, pulling one out and offering it up to Vince Junior. He didn’t take it.

  “Well, we brought some spare tubing. We always bring spare tubing,” he said, with a slight smugness in his voice.

  “Well, aren’t you and your disabled father just a bunch of fucking professionals,” I wanted to say.

  “Oh, thank God,” I really said. “You and your family are amazing at managing this thing.”

  Vince Junior replaced the tubes we broke. Good as new. Oxygen for Daddy. We’d learned a lesson: we always have to bring backup tubing on these field trips so my dad doesn’t accidentally die. We’d add that to the list, just below pretzels. More important, Greg’s and my chance of uttering the world’s funniest line was saved. We wheeled my dad into the meeting and smiled.

  “We’re here for the cake,” I said triumphantly.

  No response. No laughter. I looked at the food and beverage table. No cake. I scanned the crowd. No Shawn. His wife had died. This meeting was a total bust. All that work for nothing, and we had almost killed my dad. We needed to get better at these field trips. We had to. We weren’t going to let the Lou Gehrig’s disease win that battle.

  Fuck Lou Gehrig’s disease, I thought as I worked on getting the straw into my Capri Sun.

  * * *

  After the meeting, we got my dad home safely, and I got him back into bed. As I was doing it, I said, “Sorry we didn’t do a better job of getting you to the meeting. We’ll get better at getting you around town. We promised you field trips. You’ll get them, and you won’t almost die.”

  “It’s okay,” my dad said. “It was good to go to the meeting.”

  “Yeah, it was. Good to know other people are fighting this thing … Shawn’s wife died, so I guess he won’t be around anymore,” I said.

  “That’s too bad. He was an odd guy, but nice,” he said.

  “Yeah, the meeting wasn’t the same without him laughing it up,” I said.

  We were both silent for a second, taking it all in, both a little bummed that someone we knew had succumbed to the disease, but also feeling lucky that it wasn’t my dad. My dad smiled at me. “Well, I liked your cake line. That made
it all worth it.”

  CHILDREN’S DANCE THEATER

  Chelsea’s belief in her dream of growing up to become a professional ballerina was the one constant in her life, besides having dying parents. Most children who participate in an extracurricular activity of any kind have illusions that they will somehow be able to turn it into a profession.

  For me, it was basketball. Despite my lack of height and athletic ability, I was going to be the next big thing to hit the hardwood. I was going to make John Stockton look like a fucking D-League player. To a short white kid, Stockton was the perfect idol. He made it seem that if you worked hard enough, anything was possible. Until I was about fourteen years old, I was 100 percent certain I was going to be in the NBA. Then I stopped growing up and started filling out. My only hope was to become better at drinking and making fart jokes than John Stockton.

  Tiffany, an early bloomer with tits at twelve, was convinced she’d be an Olympic swimmer. She pushed Greg and me really hard and was sure that we were going to be a family full of gold medalists, just like the Phelps family if Michael had siblings who also won gold medals. She played the role of the hard-nosed, bitchy coach who drove us into the pool by threatening to inflict small amounts of pain or discomfort on us. I played the role of insubordinate athlete who thought his hard-nosed, bitchy coach was a total joke. I often refused to go to practice with her, just to see what small distress she was willing to put me through. One day, we almost came to blows.

  “We’ve got to go to practice,” she said, entering my room carrying a glass of milk.

  “I’m not going,” I said, hoping she’d just leave my room and go to swim practice, so I’d have the house to myself and thus could fine-tune my new hobby: masturbation.

  “You’re going, or I’ll pour this glass of milk on you,” she said.

  “Yeah, right,” I said.

  “I’m going to do it,” she said, moving the glass closer to me and tilting it to the side, a little milk spilling out onto my blue carpet.

  “Don’t, Tiff. I’m not going. If you do, I’ll tattle-tell the shit out of you,” I said.

  She did. I chased her from my room with milk dripping from my face. Too bad pouring glasses of milk on your brother because he refused to go to swim practice isn’t an Olympic sport, or she’d have a couple of gold medals around her neck.

  Tiffany was no doubt a gifted swimmer, setting several Cottonwood Country Club records. That’s right, back in the prime of the Marshall clan’s existence, we had been members of a country club. But once the other girls developed and caught up to Tiffany’s level physically, she appeared to slow down as they sped up. She then realized that her dream wasn’t going anywhere and picked up snowboarding. A couple years in, after making the U.S. Development Team, she witnessed a girl break her neck in a half-pipe tournament and decided getting an education was a safer, lower-chance-of-breaking-her-neck route.

  For Greg, being gay and all, the dream was acting. He partook in several plays and even joined a traveling acting troupe called Up with Kids. Up with Kids, the child version of Up with People, specialized in performing uplifting and downright awful songs at some of our nation’s finest amusement parks and tourist destinations. The group essentially consisted of soon-to-be-drama-nerd fatties, young boys who hadn’t yet been injected with that hormonal poison that makes getting pussy a top priority, and Greg. Greg was by far the smartest, best-looking, and gayest member of the troupe, so he stole the show. Whether we were in Disneyland, SeaWorld, Universal Studios, or at the Washington Monument, Greg was in the center of the stage, lighting it up, as my grandma Rosie laughed in the background.

  “Goddamn it, this shit is hilarious. Greg is so gay,” I’d laugh with my grandma during one of his performances.

  “Look, he’s putting on a wig,” she’d say, bursting into an even greater fit of laughter.

  Greg’s interest in acting started to wane as he became more self-aware. I also think he started getting embarrassed by my grandma and me yakking it up at all his performances. So, he quit acting and picked up writing.

  Jessica dabbled in lacrosse and appeared to be extremely interested in it, but it soon became apparent that she wasn’t as interested in the sport as she was in her coach. She sort of gave up on lacrosse around the time she started high school.

  For Chelsea, the impossible profession was dance, and her dream was very much still alive, so we were forced to play along and act as though she had a legitimate shot at doing it forever.

  “So, what do you want to be when you grow up, besides a fart and shit machine?” I would ask her.

  “A dancer. Maybe I’ll be in the New York City Ballet,” she’d say.

  “Yeah, that sounds like a very nice dream. Keep working hard, and keep your hands off your genitals. Masturbating wastes a lot of time and sucks up a lot of energy. I mean, look at me. I get nothing done,” I’d say.

  Greg and I continued to look after her more than usual during this nightmare year. We were her sarcastic, fake parents. Greg was to handle her emotions and play the role of concerned mother, while I handled the fun stuff—like teaching her how to drive while teasing her about boys. I was the verbally abusive father figure who clearly resented having children because they made him feel guilty for drinking so much. Chelsea didn’t take either of us seriously, so the three of us became some sort of a strange family mocking all other families who took being a family seriously.

  “You got a boyfriend, you little shithead?” I’d say like a drunk dad.

  “No boys like me because I fart,” she’d giggle back.

  “Well, there’s the farting, then there’s also the fact that you’re a total nerd. Plus, you don’t dress like a slut,” I’d say.

  Greg would walk over, looking like a concerned parent. “Chelsea, that is not true. Don’t listen to your drunk father. You aren’t a nerd and you do dress like a slut,” he’d joke.

  Part of our fake parenting responsibilities also involved supporting her dance dreams. We couldn’t let her become aware of the fact that all dreams die once pubes come bursting out of our bodies. We encouraged her and even called her “Dance Princess” occasionally, when we weren’t calling her Fart Princess or Baby Moe.

  “Fuck, I feel like Chelsea still believes in Santa Claus, and we’re forced to play along,” said Greg one night in the basement when we were chatting about life.

  “Yeah, it sucks. But at least she’s not into some stupid acting bullshit.”

  “That stupid acting bullshit got us into Disneyland,” Greg said.

  “Splash Mountain is better than sex,” I said.

  “I’m sure it’s better than sex with you,” Greg said.

  Chelsea was part of a dance troupe called the Children’s Dance Theater. Ages ranged from four to seventeen, making Chelsea one of the oldest members. They’d have about four major performances a year, but they practiced nearly every night. Chelsea was still too afraid to drive—mainly because my lessons would mostly end in me yelling at her about how bad she was at driving—so we still had to drive her to her rehearsals. Driving her around was an extra chore, so eventually we started to pawn off the responsibility to the throngs of Mormon neighbors who felt bad about the whole dying-parents thing and wanted to prove to themselves and God that they were good people.

  “Let us know if we can do anything to help,” a Mormon neighbor would say.

  “Drive Chelsea to dance,” I’d say.

  “Really? But…”

  “Our parents are dying, remember? God’s watching,” I’d interrupt.

  The actual going to the performance part was one thing that we couldn’t pawn off because of the guilt our mom smothered us with. She took a variety of different approaches, usually involving our dying father.

  “Come on, her father is dying. She needs you guys. You’re all she’s got.”

  “You have to go. It means the world to her, and Dad is dying.”

  “GET THE FUCK IN THE CAR BEFORE I START GETTING SO MAD T
HAT I MURDER YOU WITH MY LITTLE CANCER HANDS.”

  But the most effective line she used involved Chelsea’s dreams. “Come on, you guys. Chelsea still thinks she’s going to be a professional dancer. You have to support her and play along. She can’t lose her father and her dreams in the same year,” she’d say.

  All these tactics worked to weigh down our souls and cement our asses into seats at the theater where we’d watch the Dance Princess perform.

  * * *

  As we pushed through the snowy winter, my dad continued to get worse and worse. It was hard to get out of the house. I figured that this would serve as a big enough reason to keep us from Chelsea’s upcoming performance.

  “I can’t go to Chelsea’s show. I’ve got to watch this crippled fuck,” I would say as I gestured toward my poor dad. He was my alibi. He would get me out of going. Surely we won’t be forced to go under these Lou Gehrig’s conditions, right?

  There are all sorts of medicines one can use to overcome physical difficulties, but there still isn’t one to combat a Catholic woman’s use of guilt. Even though my dad couldn’t shit, breathe, or walk without another’s assistance, my mom still was able to guilt him into going to Chelsea’s dance performances. She used a variety of different approaches, usually involving his imminent death.

  “Come on, this will be the last chance you have to go to one.”

  “You have to go. I already bought flowers for you to give her after the performance. Don’t let this disease make you into a bad father.”

  “Chelsea needs her father there because you’re going to die soon, and she won’t have a father, and she’ll be the only girl in the group that doesn’t have a father because you’ll be dead.”

  “GET THE FUCK IN THE CAR BEFORE I START GETTING SO MAD THAT I MURDER YOU WITH MY LITTLE CANCER HANDS.”

  In the end, my dad had to go, and Greg and I were the only ones able to get him there. We had gotten much better at getting my dad ready for a day out, but it was still a pain in the ass. People in hospital beds attached to respirators aren’t meant to have active, on-the-go lifestyles.