Home Is Burning

by Dan Marshall

  My mom said we could either keep the house and make it wheelchair accessible, or find a new house that was already wheelchair accessible. Renovations would include adding an elevator from the garage up to my parents’ bedroom, making a couple of bathrooms wheelchair accessible, building a few ramps, replacing the carpet with thinner material that would allow the wheelchair to roll with ease, and widening some of the doorways.

  Ultimately, my mom and dad decided that it would be easiest to stay in the house—that moving would be too much unnecessary work.

  “We’re keeping the house, and we’re going to make it as comfortable and nice as ever,” my mom said. “We’re not moving into some dump because of this fucking disease. It’s not getting everything.”

  My parents were going to meet with architects and contractors to get the renovations going. I was happy we weren’t selling the family house. We had been through a lot in it; it was like an eighth family member. I’m sure some of our Mormon neighbors were hoping we’d get out and take our porn jokes with us, but the foulmouthed Marshalls were staying put.

  “I know it sucks that Dad’s dying and all, but it’s pretty fucking sweet that we’re going to have an elevator in the house,” I said as I sipped on my eggnog. Greg nodded in agreement, while Tiffany gave me a bitchy look. Add “elevator” to the list of our house’s awesome amenities.

  The next order of business on my mom’s list was how we were going to manage the disease once it started to get bad.

  “Your dad has taken care of me over the years, so now it’s my turn to take care of him. We’re going to do everything we can for as long as we can,” my mom said with some of her patented hope.

  There isn’t a cure for Lou Gehrig’s disease, but there are ways to deal with it. With my dad, the disease had started its attack in his upper body. That’s not good because it can go after the diaphragm, which in turn affects breathing. That’s how most ALS patients go: their lungs weaken so they can’t get the almighty oxygen to the rest of their bodies. But my mom made it clear that once an issue came up, we’d toss a solution at it. So, if my dad couldn’t chew, he’d go on a feeding tube. If he couldn’t stand in the shower, he’d get a shower chair. If he couldn’t walk, he’d go in a wheelchair. If he couldn’t breathe, he’d go on a respirator. If he couldn’t talk, he’d use a communication device. If he couldn’t make it to the toilet for a shit or piss, he’d use diapers and a urinal. It didn’t matter how much any of this cost. My parents were willing to spend everything they had. A lot of ALS patients choose to do nothing and just let the disease take them. Or some will do the feeding tube and wheelchair grind. Only a small percentage elect to go on a respirator. But it sounded like my dad was going full bore. It was the full Marshall Never-Give-Up Package.

  “I don’t mind spending the rest of my life taking care of him,” my mom said as she took my dad’s Lou Gehrig’s disease hand into her cancer hand and smiled a supportive smile.

  But the thought of seeing my crippled dad in a wheelchair, shitting into a diaper while some robot replaced his gentle voice and some clunky machine breathed for him, sounded like a nightmare to me. I took a sip of my eggnog and looked at Abby’s sweet face, trying to push the image out of my mind.

  The next item on the list was what to do with my dad’s newspapers. My siblings and I were too busy pursuing our own interests to give a fuck about the family business. My dad had a partner, Kris, but Kris was looking to retire. So my dad figured that he’d sell the papers to make things easier when he got sick. He certainly couldn’t run a newspaper from a wheelchair while hooked to a breathing machine.

  Next on the list was the Boston Marathon. My dad had run his skinny little ass off to qualify for it, and he still wanted to do it. We weren’t sure if he should be running now that he was terminally ill. But Dr. Bromberg seemed to think it would be okay, as long as he stayed hydrated and continued to eat well.

  “He’s still going to run it,” my mom proclaimed.

  “Really?” I said. “I mean, that’s really inspiring and all, but is it really okay?”

  “I’ll be fine. I’m going to keep running,” my dad explained.

  On the one hand, I thought it was a complete mistake. By this point, I had read a lot more about ALS. I read that though they don’t know what causes Lou Gehrig’s disease, it seems to occur with greater frequency in those people who push their bodies to the max. Lou Gehrig himself was famous for setting the record for most consecutive baseball games played, 2,130—a record that stood for fifty-six years before Cal Ripken Jr. finally broke it. I thought all the running was a contributing factor to my dad’s diagnosis. It certainly couldn’t be good for the muscles, and it probably drained my dad of all the nutrients that had kept him so healthy and strong over the years.

  But on the other hand, my dad loved running. It was his escape, his therapy, his release. Whether he ran or not, he still had Lou Gehrig’s disease, so he might as well die doing something he loved.

  My mom was a little uncertain about the marathon, but she knew how much he loved it, so she decided to fully support it. Sam and my dad’s other running pals, Donna and Paula, said they’d run it with him to make sure he made it through.

  Next up was managing our own mental health as things got bad. Dr. Bromberg had advised that my mom and dad both go on an antidepressant, because apparently slowly losing functioning in your body and no longer being able to do the things you love is quite a bummer.

  “I actually really love these antidepressants. I should’ve been on this shit for years,” my mom said, as she smiled as big as I’d ever seen her smile. “You guys should really try them.”

  They had also started seeing a therapist, Robin. Robin suggested that they try to cherish the time they had together and not fixate too much on the future. She said to focus on what my dad could do, instead of what he couldn’t. She also suggested that my dad come up with a few activities he wanted to do with each of us before he turned into a crippled mess—sort of a bucket-list-type thing.

  “We’ll go to a Jazz game together,” I said.

  “I’m going to take him helicopter skiing in January,” said Tiffany.

  “We’ll play a lot of tennis when I move back home,” said Greg.

  “You can take me to dance,” said Chelsea.

  “You can buy me a new digital camera,” suggested Jessica.

  “We’re also trying to figure out a big family vacation to take this summer,” said my mom.

  “That all sounds great,” my optimistic dad said.

  Then finally, there was the issue of us all helping out. My parents were a little divided on this topic. My mom thought we all should move home instantly to lend a hand and spend time with our dad, but my dad didn’t want to burden us. He knew our adult lives were starting and didn’t want the disease to get in the way of that. He liked being the giver of attention, not the receiver. He wanted to just hire an aide when it got bad, but my mom thought we should be the ones to care for him.

  “We’re his fucking family, so you little shits really need to step it up now, especially you older kids,” my mom said.

  “Well, I’m already moving home this summer,” bragged Greg.

  “I might be at law school, and I have work, and Brian and I might take a vacation to Costa Rica next year, but I’ll do all I can,” said Tiffany in a panic.

  “I already live here, remember?” Chelsea giggled.

  “Listen, I don’t want everyone sitting around feeling sorry for me and waiting for me to die. You have lives, too,” my dad said.

  “Oh, get over your denial, Bobby Boy,” said my mom. “We had all these shithead kids for a reason.”

  Looking back, I should’ve called up my work right then and there and quit. I should’ve weaseled out of my apartment lease. I should’ve tossed everything I owned in boxes and raced out of Los Angeles and back home as quickly as I possibly could. I should’ve jumped at the opportunity to spend as much time as possible with my still relativel
y healthy dad. But I didn’t know. I didn’t know how serious this horrible disease actually is. I figured I’d start visiting more frequently, maybe I’d even move back eventually, but for now I had a new career to worry about, a girlfriend, an apartment, a life—albeit a selfish, stupid one.

  “And that’s it for now, troopers,” my mom said, closing her notebook.

  We were all as silent as the falling snow as we looked over the wrapped presents, not really wanting to open them anymore. I glanced over at my dad, his Santa hat drooping on his head. I couldn’t believe all this was happening. He looked so healthy, so alive. His usual self. Was he really going to slowly become paralyzed while his family ran around trying to put the fires out? It didn’t seem real. I loved the man more than anything. He had done such a great job of taking care of all of us over the years, and it was weird that the roles would potentially be reversing—that we’d be taking care of him—and this early in life. Everyone expects to tend to their parents eventually, usually when they’re in their eighties and have dementia and are writing their names in shit on the wall. But my dad was in his early fifties. Were my siblings and I going to have to derail our lives to try to help him manage this unlucky turn of events?

  I took a big swig of my eggnog and cuddled up even closer to Abby’s warm body. My dad was in for a long year, so I figured he finally deserved the first present of Christmas.

  “Dad, you got the first present this year,” I said as I grabbed a gift for him and tossed it his way. He caught it with his still-strong hands.

  “Thanks, DJ,” he said. He paused and looked over his family, then ripped it open.

  THE YEAR BEFORE THE WORST YEAR OF OUR LIVES

  My dad and I always had a great relationship. He was my pal. My buddy. My friend. It was never like, “Oh, fuck! I’ve got to hang with my dad.” It was always more like, “Oh, fuck yeah! I get to hang with my dad.”

  We were guys who liked guy things. We didn’t get too emotional about anything. I had only seen him sort of cry once—when his dad died. Even then, he cried for only a few seconds, and then he said, “It’s part of life, and he was suffering. Let’s get packed for his funeral.” My dad trooped through life hardly ever showing grief or sadness. To him, life was short, so he thought we should enjoy it without unnecessary stress.

  Our relationship was built on these laid-back, easygoing principles. We were in this mess together—a couple of goofballs who liked sex jokes, basketball, and trying to make sense of the complexities of our existence.

  Over the years, he didn’t get much of a break from caring for his children and his sick wife, but occasionally we’d sneak up to the mountains to ski—leaving all our problems back in the Salt Lake Valley. Some of our best conversations took place on the chairlifts heading up the mountain. He’d always start off the day by saying something incredibly blissful, like “There’s no place I’d rather be right now,” and “Boy, it’s so beautiful up here,” and “God, being up here makes me forget all of life’s worries.” We’d then get chatting about the small stuff: the Utah Jazz, the stock market, The Sopranos, the Sports Illustrated Swimsuit Issue, or how crazy my mom could get.

  But as the day progressed, we’d both open up in ways we wouldn’t when we were back in that grimy, polluted civilization. He’d encourage me to talk about whatever was troubling me: school, planning for the future, dealing with my mom’s cancer. When I was feeling especially courageous, I’d even ask him about girls.

  “How do you get a girl to like you?” I’d ask while knocking the snow off my boots with a ski pole.

  “Just be you. And if she doesn’t like you, fuck her. Move on. It’s her loss,” he’d say with a smile and pass me hand warmers to stuff into my gloves.

  I loved how things were between us. I loved our meaningful, open conversations. I loved knowing that he had my back. I wanted that to last forever. The thing that scared me the most about Lou Gehrig’s disease was that it would change our relationship. I liked having my dependable dad looking after me no matter what.

  * * *

  “You went fucking helicopter skiing?” I asked over the phone as I drove through L.A. traffic on my way home after work.

  “Yep, they took Tiff and me up around Snowbird, dropped us, and we skied completely fresh powder,” my dad said. “We did seven runs.”

  “But you have Lou Gehrig’s disease, remember?” I said as I thought about honking at some dickhead who’d cut me off.

  “Yeah, I struggled a little with some of the deeper powder, but it was absolutely fantastic,” my dad replied.

  I was ecstatic that my dad was still able to go skiing. And not just skiing, but some of the most intense, beautiful backcountry skiing in the world. It meant that he was still healthy. It meant that his body was still working. It meant that he was still able to do all the things he loved. Plus, he got to spend time in the mountains, his getaway from the hectic world.

  The year 2007 appeared to be off to a strong start.

  The skiing was the first of his bucket list items for the year. But there were others on the way. He had put his business up for sale, so he was busy with that, but he had enough free time to enjoy life while he was still healthy. Soon after the helicopter skiing, he and his best buddies went on a ski trip to Sun Valley, one of his favorite spots. They skied, drank, and sat in hot tubs—a dream vacation away from their wives. My dad was staying exceptionally active. He and my mom walked Berkeley and Mazie every night through our neighborhood. Jesus Christ, those two just won’t die, I bet the Mormon neighbors thought as they saw my energetic parents speed by. Then, of course, there was the Boston Marathon on the horizon. That was the big one.

  My mom started to frame my dad’s running of the marathon as the ultimate act of never giving up. He wasn’t just a man running a marathon, but a terminally ill hero who was beating the odds and not letting his disease get in the way of his dreams. My mom thought the story was so inspiring that she reached out to all the local TV stations and newspapers to pitch it to them.

  “My husband has Lou Gehrig’s disease, but he’s still running the Boston Marathon,” she explained to them. “He’s never giving up.”

  She then expanded the story to include her own fight with cancer. “We always thought I’d die first,” my mom explained. “But now it might be him.”

  The story ran locally on a few TV stations, and then CBS Evening News with Katie Couric reached out and said they’d be doing a nationally televised report as well.

  The Boston thing became major. Friends and family rallied around my dad in support. Some would even get teary eyed. “Your dad—no, your whole family—is so brave and strong,” they’d cry.

  “Really? I think we’re a bunch of idiots,” I’d say back.

  My mom even made T-shirts that said HEAVEN CAN WAIT BECAUSE BOB’S RUNNING BOSTON, which I thought was pretty silly since we weren’t religious and didn’t believe in a heaven or hell. My mom loved all the attention. It provided a nice distraction so she and my dad could delay worrying about all the depressing things heading our way. In an e-mail to me, my dad wrote:

  I don’t know if running has anything to do with me getting ALS (I sincerely don’t believe that it has) but it has made a tremendous impact on my life after getting this goddamn disease. Training for the Boston Marathon has given me purpose and focus at a time it would have been so easy to sink into concern and depression.

  During this stretch, I was back in Los Angeles working and being a piece of shit. Abby and I were stronger than ever. Any chance I had to leave town, I’d head up to Berkeley to eat great food, cuddle, and fuck. Things weren’t serious enough with my dad for me to go home yet. I wouldn’t have had anything to do, except watch my parents prepare for the trip to Boston. I was hoping, praying, that things would stay like they were, that the disease wouldn’t move too fast. I did, however, provide my parents with a new nickname: Team Terminal.

  “How’s Team Terminal doing today?” I’d ask over the phone.

/>   “Good, good. I went for a long run. Then we just walked the dogs. I’m going to BBQ up some steaks soon here, and we’re going to eat dinner out in the gazebo,” my dad would say as if nothing was wrong.

  “Great. Well, I’m going to get back to cuddling with Abby and not caring about anything important,” I’d say.

  * * *

  In February, I flew home for a Utah Jazz game because having a beer with me at a Jazz game was on my dad’s bucket list. I hadn’t seen him since our family meeting at Christmas. For the first time since his diagnosis, I could tell something was up. He was skinnier than usual, and not just from running. His arms weren’t as mobile and his voice was softer. It was hard for him to lift the beer up to his mouth. He could do it, but not with the natural smoothness he had perfected over the years. We’d traditionally share a big bucket of popcorn. When I was a little guy, he’d scoop up a big handful and let me pick it from his paw. But now I noticed I was the only one eating it.

  “You okay, Dad?” I asked. “Not into popcorn anymore?”

  “I am, but it’s just hard for me to grab it,” he said. Picking up small objects had become something of a struggle. I thought about grabbing some popcorn and feeding it to him, but figured that we’d get some strange looks from the rabid Jazz fans cheering around us. So I just took a big sip of my stadium beer instead.

  We met up with a high school friend at halftime who later texted me, “Is your dad okay? Looked weird.”

  I wanted to text back, “He’s slowly dying of a motherfucking terminal illness that there’s no fucking cure to, you dickless dick.” Instead, I just wrote back, “Yep, he’s just running a lot.” I think it was just part of my denial, or maybe I just didn’t understand the disease well enough to talk about it, but I was almost silent about it with friends. Most of them didn’t even know he was sick.