Home Is Burning (27 page)

*   *   *

It was the first Tuesday of February, so we had a meeting to get to. My dad hadn't been to one since October because of all the trach bullshit that had gone down. Since returning from the hospital several weeks ago, we hadn't been out much. The Monster proved to be a real piece of shit, as expected. It still sort of ran, but it was becoming apparent that we'd just have to fork over the money and buy something that was more reliable. Ralph was already helping us look for a new one. Plus, the intense snowing had continued. Just our luck. My dad's wheelchair was pretty awesome, but it wasn't awesome enough to go through snow.

Taking my dad anywhere also required that we make his respirator portable. We were still learning the intricacies of that asshole respirator and didn't have much confidence in our own abilities. My mom's behavior was increasingly erratic. One day she'd be in a panic, the next she'd look all fucked up. We began to suspect that she was overmedicating herself with some of her pain medication. It made some sense; we all wanted to go through this thing comfortably numb. But it made dealing with her really difficult, and it made her a horrible student of the respirator. Greg was never good with technology. He could barely work a Web site to watch gay porn. That meant that the responsibility fell on me.

My dad had a home respiratory nurse, Jeff, who would stop by the house once a month for about an hour to check the machine's pressure levels and change my dad's tubes. Jeff was a short, abundantly happy man who loved his job. He was clearly a Mormon because he was overly nice, and you could see his Mormon undergarments (which we always called Jesus jammies) under his clothes. I liked Jeff because he'd dish out a seemingly endless string of compliments. My fat ass needed a compliment every now and then to combat my growing sadness.

“You're doing such a great job of taking care of your dad. You should be proud,” Jeff would say.

“Yeah, we're slowly figuring this thing out,” I'd say.

“You're a smart guy, a natural. Heck, you could even be a respiratory nurse like me one day,” he'd reply.

“Thanks, Jeff. You're pretty great, too,” I said, complimenting him back.

Jeff eventually taught me how to make the respirator portable. I learned how to transfer all the tubes, hook up the portable battery, and mount the thing on the back of my dad's wheelchair. We could get out of the house. We could go to these support group meetings, as I had promised my dad. Hurray!

“You're so awesome. I can't believe how smart you are,” complimented Jeff.

Greg and Mom both decided to come along to this particular meeting. I called Tiff to see if she wanted to go. Tiff and I were slowly starting to be nicer to each other, mainly because we didn't have the energy to treat each other like shit anymore.

“You want to come to Dad's bullshit support group meeting?” I asked.

“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.