Home Is Burning (5 page)

“Maybe Dad should just take a dance class, and everything will be fine,” giggled Chelsea from her Hello Kitty getup.

“God, you're dumb, Chelsea,” said Jessica. Jessica wore her usual baggy jeans and a pullover sweater, apparently too cool to partake in tradition.

“When can we open the first present of Christmas?” asked Chelsea.

Poor Abby sat there stunned, wondering why she hadn't just gone home to spend the holidays with her family instead of coming to Utah to be with us morons.

“EVERYONE SHUT THE FUCK UP!” my mom yelled, slamming down her little red notepad. She was a list maker, and had apparently made a list of everything she wanted to discuss and plan for. We all shut the fuck up as my mom took the floor. She opened the notebook as if she was reading an alternative version of “'Twas the Night Before Christmas” called “'Twas the Night Before the Shitstorm.”

“Shit is going to get bad, but we've all got to buck up and deal with it,” she explained. “I didn't survive cancer by sitting around on my fat ass. And we're not going to sit around on our fat asses while your dad dies. He's going to live a long time, but we've got to be ready.”

“Yep, I'm going to live a long, long time,” confirmed my dad.

We all nodded in agreement. Lou Gehrig's disease is very unpredictable, so it's hard to know exactly how fast and hard it's going to hit. But my mom was right. It would be best to prepare for everything so we weren't surprised when it started to get bad. We didn't want to be the idiots who didn't take the necessary precautions.

“Your dad and I have talked, and here's the plan…”

The first order of business was what to do with the family house. We had moved into the house in 1991, a few months after we adopted Jessica and a year before my mom got cancer. The house was the gem of a predominately Mormon neighborhood called the Corn Patch, which we'd sometimes call the Porn Patch, just to offend our neighbors. We were the only non-Mormon family in the neighborhood, besides our across-the-street neighbor Ralph. It was a seven-bedroom, five-bathroom, three-story redbrick mansion surrounded by pine, aspen, and cottonwood trees. It boasted a tennis court, a swimming pool, a trampoline, a drinking fountain, three pinball machines, a hot tub, and a gazebo. And it was a giant middle finger to all our Mormon neighbors. “Ha ha. We don't even believe in God and we still have a bigger house than all of you,” we'd think. They would then probably cite the cancer and Lou Gehrig's disease as signs that there was a God and remind us that God punished nonbelievers.

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 relatively 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.