by Dan Marshall
What about my poor, kind, loving dad? He was such a sweet, gentle guy to have such a horrific diagnosis. How would he handle all of this? He was supposed to fade to old while still running and skiing and traveling and drinking his nightly glass of wine, all while doing his best to keep his wife alive. Fuck, he was planning on running a couple marathons a year for the next ten years. How would he handle losing his favorite hobby? How would he manage slowly losing control of his trusted body one muscle at a time? He had figured that he’d have twenty-five to thirty more years to cram the rest of his life in. But Wikipedia said he had only two to three? Fuck that. How dare this asshole disease pop up and ruin him? I already hated it. Fuck Lou Gehrig’s disease.
I didn’t want to think about any of this. I just wanted to drink and eat steak, and go back to being a spoiled white asshole on vacation in Palm Desert.
“What are you thinking about?” asked Abby. Her eyes were a little puffy. She had been crying off and on; it seemed I was the only person who hadn’t cried yet.
“Oh, nothing. Just my terminally ill parents and how my life might totally be fucked now … Let’s get drunk,” I said.
I ordered another bottle of wine and filled our glasses to the brim.
PREPARING FOR THE SHITSTORM
Second and third opinions from Stanford and Johns Hopkins Universities confirmed the diagnosis. My dad officially had Lou Gehrig’s disease.
Fuck. Shit. Goddamnit. Murder. Fart. Cock.
The ALS storm was brewing in the distance with ambitions of taking everything from my dad and ruining our perfect little lives. We now needed to figure out what to do about it.
My solution was to go back to Los Angeles and just ignore the whole thing. I was in denial mode. So I continued rocking my sunglasses and a shit-eating grin while living my silly L.A. life. What am I going to do, cure Lou Gehrig’s disease? I thought. I can hardly do my own laundry. I assumed that the whole thing would work itself out, and that I wouldn’t have to think about it for several years. This wasn’t real. My dad was going to be fine. He was invincible. Nothing bad could actually happen to him.
“That’s a real bummer about your dad,” said my roommate Gabe as we were out drinking our dicks off at the Lava Lounge on La Brea, our local watering hole. “Man, life is so fucked up.” Gabe had lost his dad to that soulless shit muncher leukemia when he was only fifteen, so he knew what it was like to have a sick father.
“Yeah, well, life goes on. Nothing I can do right now,” I said, gulping down a gin and tonic and ordering another.
“What does ALS even stand for?” he asked.
“Ass-a-morph Latter Something-or-other. I don’t fucking know. I just call it Lou Gehrig’s disease,” I said. I hadn’t even taken the time to learn how to pronounce the disease that was killing my father.
I was probably so relaxed about the diagnosis because of my dad’s calm demeanor. It was one of his talents, but also one of his flaws—to make tragic events seem totally okay. After Michael Jordan nailed that infamous jumper over Bryon Russell in the 1998 NBA Finals to win his sixth championship, a game we attended at the Delta Center in Salt Lake, my dad said, “Well, the Jazz lost this year, but they’ll be good again next year.” “Fuck off, Dad,” I’d responded to his cheery observation as we walked away from the arena in defeat.
Following confirmation of his diagnosis, I’d call him every few days to check in. We’d chat a little about the disease, but then he’d change the subject to something about me. He didn’t like talking about himself. When we did talk about the disease, he was in incredibly high spirits. It was as if nothing had changed. I guess he had the right to be optimistic. He wasn’t showing many serious signs yet. The fasciculations in his chest were getting a little worse, but the rest of him was still strong. He was still running every day with Sam. His breathing was fine. Everything appeared to be close to normal.
“I can live a long, long time with this disease,” he explained over and over again.
“Okay, that’s great,” I’d reply, kicking my feet up and relaxing in the California sun. I believed that if anyone could live with this thing, it was my sturdy, healthy dad.
“So how’s work?” he’d ask, steering the conversation away from his terminal illness. “And when will you see Abby again?”
My mom was a different story. She was in full panic mode. For the first time in her life, she had to picture things without her loving, caring husband at her side. She had started calling me a lot, sometimes in the middle of the night.
“Danny, what the fuck are we going to do?” she’d ask.
“It’s four in the morning, Mom. Can I call you tomorrow?” I’d say back.
“Yeah. But seriously, what the fuck are we going to do?” she’d say.
“I’m going to go back to sleep. So should you.” I’d hang up, then instantly get a text message from her. “What are we going to do if Dad dies?” it’d read. I’d readjust in bed and try to get some more sleep before having to wake for work.
My siblings weren’t quite as aloof as I was. Tiffany, in particular, was terrified. Being the oldest of the five kids, she was always under a lot of pressure to help out with family emergencies. If it wasn’t my dad driving my mom to chemo or helping out with the little girls, it was Tiffany. She had chosen to stay in Salt Lake while Greg and I went off to college to drink and fuck around. Since she was only a phone call away, a lot of the family burden fell on her.
By the time she reached her mid-twenties, she was burned out on dealing with family issues and wanted to get on with her life. She thought it was unfair that nothing ever fell on Greg and me. She resented our selfish asses. And now that my dad was getting sick, she had one more sack of shit to help manage. Separating her life from the family’s life seemed to be getting harder and harder.
When the news broke about my dad, Tiffany’s boyfriend Derek had been off visiting family and mountain biking in Vernal, some shit-kick town in Utah. Tiffany had asked him to come home because she was freaking out and she didn’t know what to do. He said he would come home immediately, but he ended up staying for an additional week while feeding Tiffany lies and excuses. Tiffany took it as a sign that he wasn’t going to be supportive when things got really bad, so she decided to cut it off right then and there.
“Dad getting sick made me realize life is short. I need to be with someone who is a little more serious,” she explained to me when I came home for Thanksgiving. I was thinking about giving her some shit about it and saying something ruthlessly mean, as was our tradition, but breakups aren’t easy, so I left her alone on this one.
Derek had been a part of the family—attending just about every important event all the way down to funerals—so we were upset by his exit. It seemed as though we had already started losing things because of this shit disease.
Tiffany started dating a guy she met in her LSAT class, Brian. Brian had loftier career goals and dreamed of traveling the world and owning a fancy house full of golden retriever puppies. He seemed like a good match for my sister. And on top of all that, Tiffany had accidentally told my mom that Brian had a large penis. My mom can’t keep a secret, so she told the rest of us. I thought it was hilarious and started calling him BCB, standing for “Big Cock Brian.”
My dad had always done a great job of looking after Tiffany. My mom stressed her out, while he calmed her down. They were ski pals, and got along beautifully. She was facing the possibility of losing that now, so it made sense that she’d want to date someone who could look after her and care for her. The big cock was just a bonus.
Greg decided that once he was done with his senior year at Northwestern he would move back home to help take care of our parents. He already had a job offer from a media company called Gannett. Living in Chicago near gay bars and nice restaurants with friends sounded nice, but that shit would have to wait. Maybe guys in Utah would also be interested in his gimmicky, uncircumcised penis.
Jessica was really confused by our dad’s diag
nosis. She had no idea what Lou Gehrig’s disease was or what it would mean for our dad. She hadn’t read the Wikipedia page like the rest of us. My mom had been getting chemo throughout most of Jessica’s life, so she figured that our dad would be given similar treatment and would be okay. Jessica had always been introverted and shy around the family. She was a lot closer to my dad than she was to my mom. He had always been the one to drive her around to lacrosse practice and to friends’ houses. She was also good at talking him into buying her things: clothes, DVDs, phones, new electronics, etc. Even if she wasn’t outwardly saying she was affected by my dad’s diagnosis, she definitely was.
Shortly after the bomb, my parents began occasionally finding Jessica drunk in our basement, sometimes passed out and covered in vomit. She had also charged thousands of dollars’ worth of clothes and shit for her and her friends onto my mom’s credit card without her permission. I guess we all cope in different ways.
At Thanksgiving dinner, which we spent at the Larkins’—my dad’s running partner Sam’s family—my parents asked me to talk to Jessica about the drinking. They had talked to her about it and notified the school counselors, but they thought she should hear it from me. I was the cool brother who she looked up to.
“So Jess, why the fuck are you drinking?” I asked, a little tipsy myself. I was holding a tall glass of wine filled to the brim. Sam’s daughter, Becca, loved drinking as much as I did, so she kept pouring. It was my third or fourth of the night. I was losing track.
“I’m not,” she said, always keeping her responses short and sweet.
“Mom and Dad said they’ve found you drunk a couple of times,” I said.
“Well, you drink,” she said, eyeing the glass of wine in my hand.
“But I’m an adult. I’m allowed to drink. I’m supposed to drink. You’re a kid. Your brain is still developing. You’re dumb to drink,” I said, then gulped down the wine.
“K. Whatever.” She walked off to sit alone in some other part of the house.
Chelsea also had no idea what was going on. Anytime I brought up the Lou Gehrig’s, she’d crack a stupid joke and then change the subject.
“What do you think about this whole ALS thing?” I asked her.
“It’s fine. Dad will be fine,” she said. “Hey, so I was thinking that they should call it A-S-S instead of A-L-S.” She giggled uncontrollably.
“I like that,” I said back.
“Oh, our dad? He has A-S-S. It’s nothing,” she said back.
“But seriously, are you dealing with this okay? It’s pretty big news,” I said, trying my best to be a good brother.
She looked at me and smiled. “God, can you believe Tiffany is dating Big Cock Brian?” Chelsea would often repeat things she heard me say and was always trying to mimic my sense of humor, so she was already calling Brian by his new nickname.
There was no getting around the fact that my dad’s disease meant Chelsea’s life was going to change immensely. My parents did everything for her. My dad helped her with all her homework every night. They drove her to and from school and then to dance class. She was going to have to learn to be more independent. My parents were just beginning to seek help for some of her social issues, but therapy for Chelsea had been pushed to the back burner now that there were more serious issues at hand.
“That big cock must be really great to leave Derek for it,” she giggled, not really having any idea what she was saying.
* * *
By Christmas, my mom had started to calm down a little bit. She realized that panicking wasn’t productive. We needed to face this fucking disease head-on and try our best to remain positive. When she had been diagnosed with terminal cancer, like, a million years ago, and survived, she credited her hopeful attitude for getting her through it. She wasn’t just going to roll over and let cancer fuck her to death. She was going to fight, and fight hard, and suggested that we all do the same, no matter what it was we were battling.
Over the years, hope became a part of her whole persona. She had branded herself as a survivor fueled by hope and the commitment to never give up. Her side of the bedroom was plastered with inspirational, hope-related words of wisdom and quotes. She had hope-themed T-shirts, greeting cards, and bracelets. She had a rock engraved with the word Hope that she’d bring to chemotherapy and rub as the cancer-fighting chemicals were blasted into her. For a while, she also wrote a column called “Silver Linings” that ran in some of my dad’s weekly newspapers. The column detailed stories of hope and triumph, mainly from her personal life. Fuck, she even went as far as changing her e-mail address to [email protected], the nvrgvup short for “Never give up.” It was as though she was the self-proclaimed spokesperson for hope, because hope had worked for her.
Lou Gehrig’s disease isn’t cancer, but she wanted my dad to be around as long as possible. She wanted him to battle as hard as she had and to “never give up.” So she stopped acting like a crazy person, and she and my dad started to formulate a plan for how we were going to manage this thing if and when it started to get bad.
* * *
I flew into snowy Salt Lake City with Abby for Christmas. Coming home for Christmas was always one of the best events of the year. It was a cozy time full of my favorite activity: acting like a spoiled white asshole. Friends were in town. Snow was on the ground. There was always a lot of drinking. Our living room had high ceilings, so we’d always get a tree in the fifteen-to-twenty-foot range, beneath which my mom would pack a seemingly endless supply of presents. We’d sit around watching Christmas movies with a light buzz, feeling that warm feeling you get around the holidays, that feeling like nothing bad is ever going to happen.
On Christmas Eve, we’d all crowd around the towering Christmas tree in goofy pajamas. My dad would toss on a Santa hat and read “’Twas the Night Before Christmas,” even though we were all getting way too old for that shit. Tradition was tradition. Then we’d select someone to open the first present of Christmas. It was usually one of the little girls, since they were younger and Christmas meant more to them, but sometimes it would be whoever was having a hard year and needed a present the most. It had never been my dad.
But that Christmas, there was a certain intensity in the air. This trip wasn’t all about watching Elf, getting too many presents, and letting alcohol slowly numb our brains. There were some serious issues to talk through.
On Christmas Eve, my mom called us all around the Christmas tree for our first post-diagnosis family meeting. We all still wore our silly pajamas, the Santa hat on my dad’s head, our happy golden retriever dogs smiling at our feet. The ornaments danced and sparkled on the tree as if nothing were wrong. Outside, snow fell lightly, adding to the ambiance. I snuggled up on one of the living room sofas with Abby. We both had eggnog in our mugs, with an extra shot of whiskey, because why the fuck not?
“I know it’s Christmas, but I don’t know when we’ll all be together again,” my mom said as we all diverted our attention from the presents to her. Her inane pajamas had reindeer all over them. “We’ve got a shitstorm heading our way and we’ve got to figure out what to do.”
“Maybe Dad should just go in a nursing home,” suggested Greg, who was working on a hot cocoa and wearing Batman pajamas.
“Have you ever been to a nursing home? They’re full of a bunch of old fuckers shitting their pants and watching The Price Is Right all day,” I said, scratching an eggnog stain off my Grinch bottoms.
“Well, Dad will get that way eventually,” he said.
“I won’t get that way for a long, long time,” my dad said while looking down at his Superman PJs.
“Maybe we should sell the house and just travel until you’re dead,” suggested Tiffany. She wore red pajamas covered in hearts.
“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 sweat
er, 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.