Home Is Burning

by Dan Marshall

  “Didn’t I tell you to get a generator?” he said as we walked up to my dad’s room.

  “I know, I know, I know. We fucked up,” I said back. “We all suck at this.”

  Ralph shook his head at me, then at my dad. “Your kids are idiots, Bob,” Ralph said. My dad smiled and nodded in agreement.

  Ralph was able to round up a neighbor’s gas-powered generator. We set it in the front of our house, and Ralph fired it up. He brought over one of his long extension cords, because we didn’t have any, and ran it up through our house and into my dad’s hospital room on the top level.

  “We could have used a shorter cord if you had made the dining room his room,” Ralph reminded me.

  “I know. We’re fuck-ups,” I admitted again.

  The power company finally got the power back on. We unhooked the generator and plugged his respirator back into the wall. My dad looked relieved.

  “I’m sorry, Dad. We’ll do better. That was just a little initial slip-up. You’re going to live forever, don’t worry,” I said. He didn’t seem too sure about that.

  The next day, my dad got Ralph to drive me to Home Depot to grab a generator and all the other items on the list. As we drove there, I promised myself that I would do better. I would stop being such a child and try to become the man of the house. I would listen to Ralph. It was time to stop fucking around. It was time to grow up and take life more seriously. No more watching Elf and drinking eggnog. My dad’s life was in my soft, underworked hands. I had to add some calluses to them, toughen them up.

  I bought the best generator money could buy … with daddy’s credit card.

  BOB’S MONSTER BUS OF EXCITING MAGIC

  My dad’s quality of life would never be what it was. But we all pledged to try to make the time he had left as fulfilling and comfortable as we could. We promised him that, though he was now attached to a respirator, we’d still get him out of the house and take him places. It’d be fun. We’d do a field trip every day. Maybe we’d go to the zoo. Maybe we’d go to a Utah Jazz game. Maybe I’d take him down to a strip club so he could get some tits rubbed in his face. The world was ours!

  To keep this promise, we realized that our incredibly expensive luxury vehicles were no longer going to cut it. Lexuses might have heated seats and DVD players and handy compartments and lots of leg room, but they don’t have convenient places to host a 450-pound wheelchair with a respirator clinging to the back of it and a near-dead man sitting uncomfortably in it, wishing his life hadn’t taken this wicked turn down Fucked-Up Lane. So, we started looking for a wheelchair-accessible van.

  My mom and I undertook this project. We didn’t know the first thing about buying a wheelchair-accessible van.

  “How do we get a van for Dad?” she asked.

  “I’m not sure. Maybe we should ask someone who would know,” I suggested.

  “Who would know?” she said.

  “I don’t know,” I said.

  “I know you don’t know, but who would know?” she said.

  “I’m not sure,” I said.

  “Me neither,” she said.

  I started to call around to places with depressing names like Mobility Utah, or Para Quad Mobility, or Freedom Motors, or Freewheel Mobility. I hate when they try to put a happy spin on something that sucks. It only amplifies the shittiness. It’s like a doctor who dons a clown nose to tell you that you lost both of your arms in the car crash. That’s right, fuck you, Patch Adams.

  All vans—new and used—appeared to cost around thirty-five thousand dollars, but I couldn’t find any that had heated seats and DVD players. Plus, my dad sat at about fifty-five inches tall in his chair, making it difficult to find one with a large enough opening for him to be wheeled through; we didn’t want him to have to endure both Lou Gehrig’s disease and a bonk to the noggin at the same time.

  I decided to call Dave Ricketts of the Muscular Dystrophy Association (MDA) of Utah. Dave was a great resource, and knew everyone who had had or currently had ALS in the entire state. He’s a prize of a human being. I always wanted to tell him that he put the trophy in dystrophy, but didn’t think he’d appreciate that dark joke. He was the one who had found the temporary wheelchair for my dad.

  I had contacted Dave when my dad went in for his tracheotomy operation, knowing it would take some time for a van to be tracked down, even by the master, Dave. He said he would make some calls.

  We waited for several weeks without word. I eventually received a phone call from a woman named Michelle who had lost her husband to ALS two years earlier. She was in her late twenties. Her husband had gotten ALS when he was twenty-eight years old—an exceptionally young age for a disease that usually targets men in their forties or fifties. He only lasted about a year. She had been pregnant with their second child at the time. He elected to not go on a respirator, unlike my dad, but they did do the whole wheelchair thing, so they had gotten a van. The van sat in front of her house, a constant reminder of what had happened to her husband—her first love and the father of her children. Now, she was about to get remarried, move on with her life, and forget about all that ALS had destroyed, so she was looking to donate the van.

  I asked her how much she wanted for it. She reminded me that donate meant free.

  “Oh, yeah, that’s right,” I said, wanting to call her a smart-ass, but remembering that she too had been struck by tragedy, making us brothers, or sisters, or friends who have gone through similar shit and thus looked after one another.

  “Where do you live? I’ll come pick up the van this weekend if that’s okay,” I said.

  “That would be great. I really want to get rid of it. I’m getting remarried, moving on,” she said.

  “I understand, friend. No sense making life hard and sad forever. So what’s your address?” I asked.

  “2600 South and 2300 East, in Spanish Fork,” she said.

  “Fuck,” I said.

  She paused long enough for me to realize she was probably a Mormon and that the word fuck had offended her. Dan, you’re a fucking idiot, you fucking fat fuck, I thought to myself. Now, when I called myself fat, it wasn’t much of a joke. Because I was so consumed with taking care of my dad’s body, I was neglecting my own. I was eating loads of lasagna and fast food and drinking too much, all while also not exercising, leaving me at my peak weight, around 195 pounds. I had always been a skinny kid, so I felt fat as shit.

  If you’re not fresh on your Utah geography, Spanish Fork is about an hour to an hour and fifteen minutes south of Salt Lake—in other words, not that close to our house—thereby necessitating my use of the word fuck. We’d agreed that I’d come and take the van off her hands the next Sunday. I told her that I’d be there around two, so she could attend church and I could get all sorts of fucked up with alcohol on Saturday night.

  I stuck to that plan. Saturday night, my buddy Dom and I really tied one on. I woke up more hungover than Jesus after discovering that he could turn water into wine. “I wonder if Jesus could turn twigs into cigarettes,” I thought to myself as I lay in bed smelling of smoke. I was fully clothed and felt as though I had dumped a fifth of vodka directly on my brain.

  I figured Greg and I would do this one together. We’d drive down to Spanish Fork, listen to some music, stop at Del Taco, talk about how fat I’d gotten, and wonder how long we would be forced to live our sad, parents-are-dying existence. Maybe we’d get to Spanish Fork, our bellies full of spicy chicken burritos, and decide we’d just keep driving south, maybe get to Mexico and eat some real Mexican food. We’d get along swimmingly, as usual. I wouldn’t even tease him for being gay once.

  “I kind of wish Dad didn’t do the respirator,” I’d say.

  “Me, too,” he’d say.

  “But not really. You know what I mean. It’s just hard. It’s a lot of work,” I’d say.

  “Maybe we should just keep going all the way down to Mexico, run away,” he’d suggest.

  “We do have bellies full of Del Taco. We’ll
sit by the ocean, find some women, drink tequila, and be young and not tragic,” I’d say.

  “Perfect plan, except I’m gay and I don’t like tequila,” he’d say.

  It would go something like that.

  But, as I slowly woke up—the previous night a blur in my alcohol-soaked brain—my mom entered my basement bedroom. Greg had been on Daddy Duty the night before, so I had been able to sleep in my own bed. My mom looked especially bald and was wearing a long red coat that looked like a Navajo rug. It covered her perpetually cold body from her shoulders to her toes. She had the bright idea that she would drive the van back, even though she had crashed her much-simpler-to-drive Lexus about six times in the last three months while trying to drive under the influence of chemo brain.

  One of my mom’s biggest flaws is that she tries to do too much, just to prove that she cares. Though she was still beaten up from chemo, she would sit by my dad all day long. It was a testament to how much she loved him, but she looked exhausted. Visiting friends would advise that she go to her room and rest, but she would say, “I’m fine. Bob needs me,” and have a spoonful of yogurt.

  “Get up. It’s ten. We have to pick up that van,” she said.

  “We don’t have to be there until two,” I said, rolling back over in bed.

  “But we don’t know where Spanish Fork is,” she said.

  “I know where it is. It’s about an hour to an hour and fifteen minutes south of Salt Lake,” I said.

  “Yeah, but we don’t know where their house is,” she said.

  “I thought Greg and I would do this one. Then maybe flee to Mexico,” I said.

  “What?” she said.

  “Nothing,” I said.

  “Greg’s a bad driver,” she said.

  “Well, he can drop me off and I’ll drive the van back,” I said.

  “I’m driving the van back,” she said.

  I sat up in bed, taking the whole thing more seriously now. “You’re not driving the van. You’re a horrible driver.”

  “Dan, stop. I’m a really good driver,” she said.

  “You drove your car into the fence two weeks ago,” I said.

  “It came out of nowhere … Get the fuck out of bed. We’re leaving. You smell like cigarettes, by the way,” she said.

  “You smell like cancer,” I wanted to say.

  My mom persisted, so she and I got in her Lexus and began the hour to hour-and-fifteen-minute drive to Spanish Fork. I tried joking with her to spice up the drive, but she wasn’t in the mood.

  “They should call Spanish Fork ‘Spanish Food Utensil,’” I joked.

  “What?” she asked, confused.

  “They should call Spanish Fork ‘Spanish Food Utensil,’” I said again.

  There was a long pause. My mom started to cry. “What are we going to do about Dad? I don’t think I can handle this. How are we going to take care of him?” She had been crying a lot lately. Now that her chemo brain was subsiding, she was smacked with the reality of this grim situation.

  I didn’t know what to say. I knew that the upcoming months were going to suck some major dick. It wasn’t going to be easy. But I didn’t really want to talk about it with my mom. I was too hungover. So I repeated, “Don’t you think it would be funny if they called Spanish Fork ‘Spanish Food Utensil’?”

  I probably should’ve said something else. I probably should’ve reassured my mom that everything was going to be fine and that we’d make it through this as a family. I should’ve told her that I loved her and knew things were really hard for her right now. It would’ve been a nice little heart-to-heart. The two of us needed one of those. I had been hard on her lately. But instead, I said my horrible Spanish Fork line like an asshole.

  I was scared shitless that we would get there and my mom would insist on driving the van to the point where I would have to tackle her to the ground in front of strangers to keep her away from the wheel. I would be judged by the Mormons and they would murmur, “He’s going to outer darkness,” their version of hell, as I pried the car keys from her weak cancer hands. But I would really be saving her life, because if she got in that van, she’d drive it straight into an oil truck, sending blackened pieces of her and her Native American coat a mile into the air before landing on my I-told-you-so face.

  Even though the van was free, I had high expectations. My friend Brian had been in a car accident that left him a quadriplegic, so his family had purchased a wheelchair-accessible van to get him around. It had a DVD player, great air-conditioning, and a nice sound system. Lucky Brian!

  I wasn’t expecting a DVD player, but I was expecting a bit more than the plus-sized jalopy the van turned out to be. It was the definition of an eyesore. It was disgusting. We got there and my first reaction was “Oh fuck, that better not be it,” remembering that I had to drive the thing an hour to an hour and fifteen minutes back.

  I don’t know why “oh fuck” was my initial reaction. I don’t know if it was because the van was baby blue. I don’t know if it was because it was the size of one of those school buses for the mentally challenged. I don’t know if it was because it probably wasn’t worth enough to be traded for a DVD player. I don’t know if it was because of all the rust around the tire wells. I don’t know if it was because it had no front passenger seat, making road head a near impossibility for safety/logistical reasons. Or if it was because the old wheelchair that a former ALS patient had used before dying was still sitting in the van like an unforgettable nightmare, making it seem haunted. But that was my reaction.

  My mom’s was, “Do you think it’s that blue piece of shit?” which was a bit more precise a response than mine had been.

  I thought we should turn around, head back to Salt Lake, fork over the thirty-five thousand dollars, and get a van that didn’t look like God’s middle finger. We could just tell them that we couldn’t find the house and we had to get home because there had been an emergency back in Salt Lake, that my dad’s trach had exploded and he was on the brink of death, that we would maybe come back for it if my father survived the trach explosion.

  “Mom, we don’t really want this thing, do we?” I asked.

  “Stop it. It’s not that bad. We’re already here,” she protested back.

  “It’s the ugliest thing I’ve ever seen, and I bet it doesn’t even work. We take it and then we’re stuck with it sitting in our driveway, bringing down the value of our home,” I said.

  My mom paused for a few seconds, so I thought I had convinced her, but instead she said, “Oh, shut up,” and hopped out of the Lexus. We had probably made a mistake by driving a luxury vehicle out to pick up something free, but fuck it. My dad was dying.

  We knocked on their door and the young, tragic woman walked outside. She was still in her church clothes.

  “Hi, I’m Debi, and this is my son Danny. We’re here for the van,” said my mom.

  I hoped for a second that the blue van in front of their house wasn’t theirs, that they had the fully loaded real van in the back with Lord of the Rings blaring on all five DVD players.

  “I’m Michelle. It’s so nice to meet you. It’s this blue van out front,” she said.

  Fuck.

  She and my mom hugged. I wasn’t sure if I was supposed to hug her. I didn’t think the van—given how ugly it was—called for me to sacrifice a hug, even though I was wearing a shirt that read HUG THERAPIST, which is often misread as HUG THE RAPIST.

  We looked at each other and silently agreed not to hug.

  I was worried that this was going to be a tear-jerking experience for my mom—meeting a woman widowed by the same disease that would eventually widow her. I hoped my mom wasn’t going to bring up her illness, that this little adventure could be focused on my father’s Lou Gehrig’s disease rather than the cancer, and that extra tears would not be shed. After all, Michelle was just trying to take the final step in moving on with her life. We didn’t need to cry.

  My mom started in. “So your husband had Lou Gehrig’s
?”

  “Yeah, he did. He was twenty-eight when he was diagnosed,” Michelle said.

  “What a shitty disease,” my mom said.

  Michelle looked a little offended by my mom’s language. She was definitely a Mormon. I could even see a picture of Jesus hanging in her house. But she realized my mom wasn’t in a great state of mind, so she forgave her, and said, “Yeah, it’s pretty bad.”

  “I don’t know of a shittier disease,” my mom said. She then burst into tears, really sobbing hard. “I don’t want to be alone,” she managed to say.

  Though she was twenty years my mom’s junior, Michelle was experienced in losing a husband. She pulled my mom in for a hug, rubbed her back. “It’s bad, but life goes on. I’m getting remarried soon. That’s why I’m trying to get rid of the van. You’ll be okay.”

  “I have cancer,” my mom said. “I won’t be okay.”

  We talked for a while longer, mainly about the disease and her husband’s battle with it. The whole time I could tell she didn’t want to relive the experience. She truly was trying to move on. But my mom was curious and asked all these inappropriate questions.

  “How long did he last?”

  “Was he able to go to the bathroom on his own or did you have to help him?”

  “Could he talk?”

  “Did he say ‘I love you’ a lot?”

  “Did he go on a respirator?”

  “Are you glad he didn’t go on the respirator?”

  “How old were your children when he died?”

  I had been hoping the van exchange wouldn’t involve all this conversation. I knew we were going to be going through all this shit; why talk about it with a complete stranger? I just wanted the keys, so I could go to Del Taco, order two spicy chicken burritos, and get home so I could sleep off my hangover and prepare myself for the newest episode of Curb Your Enthusiasm.