Home Is Burning

by Dan Marshall

  Then the father and mother of the dead ALS husband came out. Michelle and her husband had moved in with his parents when he was diagnosed, so they’d have some extra help. I guess they all still lived together.

  The mother hugged my mom first and then looked at me. She said, “And this must be tough for you, too.” She gave me an awkward hug.

  “Well, it is. But let’s take a look at the van,” I said.

  The father was a man’s man and knew a shitload more about cars than I ever will. His handshake nearly crushed my baby-soft, never-worked-a-day-in-my-life hand. I could hear my mom continuing with the inappropriate questions while he showed me the van. “So, who are you remarrying? Do you feel like it’s too soon? Are your children okay with the remarrying thing? You’re moving out of your husband’s parents’ house, right?”

  The man’s man was honest and very aware of what a piece of shit the van was. He ended most sentences with “… but it still runs.” He listed off several things it had wrong with it: “It needs power steering fluid. The oil needs to be changed. The battery needs to be replaced. Sometimes it doesn’t turn on. It’s top-heavy, so it feels like it’s going to tip over when you drive faster than forty. The lights don’t always work. The back left tire has a nail in it. It doesn’t pass safety inspections … but it still runs.”

  “Fuck me,” I said to myself, worrying about my safety. I figured that this was the way I was going to die. The back left tire with the nail in it would fly off and bounce through the windshield of a family’s car, killing them all—the nail going through the youngest and most innocent child’s forehead. The top-heaviness of the van plus the missing wheel would cause the fucker to careen out of control. I would try to slow down and regain control, but it would be too late; the van’s weight, teamed with physics, would send it into a wildly chaotic roll and propel it across the median and onto the other side of the freeway. An oncoming truck carrying cannonballs would approach the van with its horn fully honked. The truck, unable to stop, would hit the van and explode, sending thousands of cannonballs into the air, and then through all the neighboring cars’ windows. Everyone in every car within ten miles would die. The paramedics would find me burned to death in the driver’s seat of this blue piece of shit and yell, “Why?” as the camera pulled to an aerial shot of all the death and destruction that this ugly, ugly van had caused.

  Del Taco was no longer an option.

  Michelle recognized the shittiness of the van, too. “It’s a bit ugly, I know. But we had some fun in it. Just being able to get him out of the house was priceless.” She smiled. “My kids called it the Bus or the Monster.”

  I hadn’t thought of a nickname yet because I was busy concluding the vision about how my life was going to end, but I improvised. “My dad’s name is Bob, so we’re going to call it Bob’s Monster Bus of Exciting Magic.”

  She paused for a minute, not knowing how to respond. “That’s a good name, I guess,” she finally said, since she needed to say something. “We just called it the Bus or the Monster.”

  The man’s man started the van, slapped the front hood, and said, “Good luck. It takes diesel, but only one of the tanks works. Also, it’s not registered, so be careful around cops. Oh, and make sure you don’t go above fifty. It stopped running on us once when we did that.”

  I looked at my mom. She was still teary eyed. “You still want to drive this thing?”

  She looked at the bus and then at me. She shook her bald head and began walking toward the comfortable and safe Lexus.

  So, we got a van! And not just a van, but Bob’s Monster Bus of Exciting Magic!

  I drove home at thirty-five miles per hour the whole way, avoiding forty so it didn’t feel like I was going to tip over, and definitely avoiding fifty so it didn’t stop running. I stayed in the slow lane and kept two hands on the wheel at all times. The radio probably didn’t work, but I was too nervous to check. I repeated, “I’m not going to die,” over and over and over again, pausing only to yell “Fucking go around me!” to tailgating cars. My eyes scanned every which way for cops, and I would breathe a sigh of relief every time one passed me without pulling me over.

  But all was okay. I always think if I worry about everything and picture the worst-case scenario, it won’t happen. I eventually pulled the eyesore onto our cracked driveway. I got out of the car and looked at the van.

  “Dad’s going to hate this disease even more,” I said to myself as I lifted my phone to snap a picture of the piece of shit.

  I ran upstairs and told my dad that we had gotten the van.

  “Is it nice?” he asked.

  “It’s okay,” I said, not wanting to defeat his spirits.

  “What does it look like?” he asked.

  I pulled out the phone picture of the van and pointed it his way. He looked at it with squinty eyes, shook his head in disappointment, and said, “We should put a decal on the side of it that says ‘Fuck ALS.’”

  “I’ll look into that,” I said. “I nicknamed it, though.”

  “What?” he asked.

  “Bob’s Monster Bus of Exciting Magic!” I proclaimed. My dad didn’t seem amused, just confused. “Never mind. It’s a stupid nickname anyway. Let’s just call it the Monster.”

  “Agreed,” he said, glancing at the picture once more. “It’s so damn ugly.”

  WE’RE HERE FOR THE CAKE

  My mom was a big believer in support groups. She had gone to one for her cancer and it helped provide her with the hopeful, never-give-up attitude that got her through so many chemotherapies. She became instant friends with most of the other members. It gave her a community, a group of people who understood what she was going through, a group of people to cry with, hug, and get encouragement from. They were a giant part of her life when she was first diagnosed.

  However, over the years she gradually stopped going. Not because she didn’t find them useful anymore, but because her cancer friends started to die. It became too depressing. I guess that’s the downside of surrounding yourself with terminally ill pals. Of the twenty-five people she initially attended meetings with, she was one of two who were still alive. It was a sad statistic, but it displayed what a fighter my feisty mom was. She truly was a survivor.

  When my dad was diagnosed with Lou Gehrig’s disease, Dr. Bromberg suggested he start attending support group meetings hosted by the Muscular Dystrophy Association. My mom—having seen the value of her support group despite losing so many friends—encouraged him to go. So he did.

  The meetings were held on the first Tuesday of every month up at the University of Utah’s Motor Neuron Disease Clinic. He and my mom attended their first in November of 2006—just weeks after getting the sack-of-shit news—and had been to just about every one since. The meetings would last about two hours and brought together a variety of people affected by the disease in one way or another—either they had it, were with someone who had it, or had lost someone who died from it. Snacks were included. Pizza. Cake. Capri Suns.

  Those with ALS would view each other either as warning signs for how bad it could get, or as reminders of how much they themselves had lost. When my dad started attending, he was the fresh-faced guy new to the disease, not showing signs yet. Everyone was worse than him. A guy on a respirator named Vince Senior was the worst. But as the disease progressed, my dad began climbing the ranks.

  I found the meetings to be depressing as shit, but my dad enjoyed going, because it made him feel less alone in his battle with Lou Gehrig’s disease; it was one of the few places where he could go and say, “At least I’m not as bad as that asshole.” He’d open up at these meetings in a way he wouldn’t at home and really talk about his fears regarding the disease. The people at the meetings were his friends, his allies, his war buddies—and, though most of them struggled to talk, they really understood each other. He wasn’t the only one going through this. Since he enjoyed the meetings so much, once I moved home I promised to take him to every single one until he couldn
’t go anymore.

  Those accompanying the person with ALS to the support group meeting usually looked tired and had more to say than the two hours would allow. Bags under their eyes. Shoulders slumped. Hadn’t been fucked for months, maybe years. In other words, I fit right in. These were the people who would really go for the free Capri Suns, cake, and pizza provided by the MDA’s scrawny budget. They’d throw caution to the wind. Fuck it, I’ve got to treat myself since I’m working so hard to keep someone alive, I imagined them thinking as they tried to stab the straw into that tiny little hole that the makers of Capri Suns put on top of the juice pouch in an effort to completely fuck with us all.

  Those who had already lost someone looked like they’d had the wind knocked out of them, like they were still mad at God, like they were permanently tired. They were often trying to get rid of all the equipment they had accumulated while caring for a loved one: commodes, urinals, cans of Promote, hospital beds, wheelchairs, communication devices, etc. But these people were always in a little bit better spirits. They’d laugh more, smile more, use the phrase “Believe me, I know” more. They’d been through the Lou Gehrig’s mess already. They were in the clear. They were rebuilding. Their lives were starting to return to normal.

  The topics at these meetings were as depressing as the crowd. One month, owners of a funeral home came to explain how everyone could save a shitload of money if they prepaid for their funeral and picked out a coffin in advance. Honestly. During this meeting, I was tempted to squirt my Capri Sun at the assholes, but I was unwilling to part with the fruity greatness that is Capri Sun. Plus, it had taken me twenty minutes to get that fucking straw in. I kept looking at my dad with a this-is-bullshit expression on my face. “We helped a woman save over three thousand dollars,” bragged one of the assholes.

  The meetings would start with everyone giving a quick update about how things were going, what the disease had been recently attacking. The people with ALS would rarely give the updates themselves, instead electing a family member do it.

  “This is my wife. She’s had ALS for two years now. It’s going after her legs, so she’s in this power chair,” one would say.

  “My husband had ALS. He died about three years ago after a long battle. This is my eight-year-old daughter, who will grow up without a father,” another would say.

  “He was just diagnosed last September, so we’re new to this whole thing. It’s sort of unfortunate, but we’re taking a trip to Italy this summer. He wants to see it before, well, you know…” another would say.

  The more meetings we attended, the less affected I’d feel by the sob stories, but occasionally I’d hear a new horror story that seemed to top the rest. There was one jovial guy named Shawn in his early to mid-forties who started showing up to the meetings. He always had this bizarre smile on his face and an equally bizarre, happy tone in his voice. He told his story in a crazy, happy voice, saying: “My wife has ALS. She was diagnosed in April of 2007. She’s at home now. She can’t make it to the meetings anymore. Her breathing is not so good, so she’s on the BiPAP breathing machine pretty much all day and night now. She goes off it briefly to eat, though eating is really hard for her. We have three kids, who are also home. They are seventeen, fourteen, and eleven. They’re dealing with it okay. She has elected to not go on a respirator or get a feeding tube, so we’re expecting hospice to be necessary really soon.”

  The super-fucked-up-times-forty thing about his situation was that his wife wasn’t comfortable letting anyone else but Shawn handle any of the care. It had to be him that fed her, bathed her, changed her diapers, etc. He also worked full-time. Because he was so overworked and so alone, he probably needed the support group more than any of us.

  “My wife doesn’t let anyone touch her … you know … privates or whatever. She’s too embarrassed. So I have to shower her and change her diaper and all that,” explained Shawn, with a smile so big it looked like strings attached to his ears were pulling the corners of his mouth toward them. “I have to do everything.”

  The room was silent for a moment as the weight of Shawn’s situation set in, then another man, Karl, chimed in. “At first I would only let my wife help me with bathroom stuff. Then I would let my kids. Then I would let my siblings. Then I would let my in-laws. Finally, I just let anyone with warm hands do it.”

  Everyone in the room laughed, Shawn the hardest—so hard, in fact, that he outlaughed everyone by a good thirty seconds. After he finally finished laughing, Shawn’s eyes opened wide and he responded, “Yeah, well, my wife won’t let anyone but me do it, so I have to do it all.” Shawn looked as if he was being tickled. His laughter intensified. “I even have to handle that time of the month for her. You know, her period.”

  If I’d had anything in my mouth, I would’ve spit it out in shock. “You’re fucking kidding me, right?” I wanted to ask, but I elected to glance over at Greg instead to make sure he was hearing all of this. In the process of caring for my dad and his cock, I had totally forgotten about periods. It made sense. ALS doesn’t affect the mind. Why should it affect the vagine? (T-shirt idea.) If my dad were a woman who still got periods, I probably would’ve been wrist-deep in vaginal waste once a month. I was suddenly grateful that he wasn’t a woman. “Thank you, God. Maybe you weren’t molded from a large piece of horse shit.” I leaned over and rubbed my dad’s shoulder. He probably thought I was comforting him, but I was really thanking him for not getting a period.

  Shawn continued, “It’s actually really funny.” He paused briefly to chuckle to himself. “I used to be a tampon salesman when I was younger, so I had to know about all the products, so I knew how a tampon worked—how to put it in, which ones absorb the most. All that stuff. So I’m really lucky. Tampons aren’t a big deal for me.”

  In my mind I was clapping so hard my hands stung. In reality, I sat with a slight smirk on my fat face. This guy was awesome. How could he handle something so tragic with such a positive outlook? We all had something to learn from the tampon salesman. I wanted to stand up and applaud. I wanted to shake his hand. I wanted to throw roses at his feet. I wanted to learn how to whistle so I could do that one loud whistle thing people do when they like something. Thank you. Thank you for looking at your situation with such awkward happiness. Thank you for taking that tampon salesman job years ago even though you were undoubtedly slightly embarrassed and hesitant. Thank you for not bringing your dying wife to the meetings so you could talk about your handling of her period. Thank you for being so strong and such a hero. Bravo. Bravo, my lad.

  “But anyway. My wife has decided to not go on a respirator, so she’ll do the BiPAP machine for a bit more, and then she’ll die,” Shawn said, giggling.

  It was people like Shawn who made the meetings worth it. It made us all feel we didn’t have it so bad after all. Shawn was doing it all alone; he was all by himself on the Lou Gehrig’s island. At least we had the help of each other. At least we didn’t have to change my dad’s tampon.

  * * *

  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.