Home Is Burning (7 page)

“See, you can't,” said my mom. “You have to accept the help you need.”

And she was right. My dad didn't like to bother or inconvenience other people. He didn't like asking for help. But, if we were going to manage this situation, he'd have to become comfortable receiving help from us, and I'd have to become comfortable giving it.

Although I was really enjoying listening to my passive dad and aggressive mom bicker back and forth, I said, “I don't mind. Let's wash those balls.”

“It's really okay. I'll just rinse off,” my dad tried one last time.

“No, Dan will help.” My mom slapped the soap into my hand and slammed the hotel bathroom door, effectively locking us in there. “Don't forget to get his foreskin,” she added through the door. Like Greg, my dad wasn't circumcised.

“Sorry, DJ,” my embarrassed dad said as I began to undress him. I slipped off his running shorts, looking away from his junk, but noticing how skinny he was from head to toe. I hadn't spent a lot of time in my life looking at him naked (believe it or not), so I didn't have much to compare it to, but I could tell that the disease was ruining him. He was always a little plump—like a king who'd had too many steak dinners and bottles of wine. He had started to thin down with all his running. But now he looked like he'd been plucked straight out of a POW camp. Each rib was outlined through his sagging skin. His shoulder blades were as sharp as volcanic rocks. His face was so gaunt, he already looked like a corpse. “Jesus, you're skinny. We've got to get you a million hamburgers,” I said.

“Or maybe I should just drink more beer,” he joked.

“I'll join you there,” I said, craving a thousand beers and thinking how being drunk would make all of this much easier.

The muscles in his chest were twitching, really going wild.

“Those are the muscle fasciculations,” he explained, once he noticed me looking. “That's the Lou Gehrig's disease working on me.”

I placed my hand on his chest and felt the muscles pulsate just above his big, beating heart. I wanted to grab those muscles and tell them to chill out, to stop destroying my dad and relax. But they continued to shake and pop. The disease was in control. My dad was under attack.

He was naked now. We didn't make any eye contact. I turned on the shower, checking to make sure the water was warm. It was. Hotel water never seems to struggle to get hot. I helped him step into the tub and grabbed the soap.

“Let's get the balls out of the way first,” I joked as I slowly made my way down there. I had used a vacation day from work to come to Boston for the marathon. Weird to think I was using my vacation to wash my dad's dick. “How was your trip?” I imagined a co-worker asking. “It was great. Washed my dad's dirty dick,” I would casually reply.

As soon as the soap touched his privates, he changed the subject to something we used to talk about before this mess. “So, you think the Jazz will make the playoffs this year?”

“It's looking good,” I said, rubbing the soap over the place where my life had started with a triumphant orgasm some twenty-four years earlier. “Seems like the combination of Williams, Boozer, Okur, and Kirilenko is finally working out.”

“Would be fun if you came back for a playoff game,” he said. I had finished with the privates, but continued to look away as I soaped up his legs.

“Yeah, it'd be nice to get back for another game. I'll see about getting another day off work.” His body was now covered in soap from head to toe, from balls to butthole. I aimed the showerhead at him and washed all the suds off his brittle body. They ran down the drain as if they, too, were trying to get away from this horrific situation.

As I wrapped him in towels, he said, “First ball wash. Not bad.”

“Yeah, I didn't vomit or anything. I feel like I could be one of those ball-cleaning machines on a golf course if the whole PR thing doesn't work out.”

“You should look into that,” he said. “And seriously, thanks.”

“It honestly wasn't bad at all.” And it wasn't. It was just different. We got him dressed. He looked good as new. Well, he looked like shit because he had just run a marathon and he had Lou Gehrig's disease. But he looked clean and refreshed, the best he could be. It was the first taste of how intense shit was going to get, the first sign that our relationship wasn't going to just be talking about basketball.

We left the bathroom. My dad took a nap. I went to the hotel bar for a strong one.

*   *   *

As May rolled around, my dad was still in good spirits. He and my mom walked the dogs up Millcreek Canyon every day—a stretch of national forest a few minutes from our house. My mom thought if he stayed active and kept his legs strong that maybe that son of a bitch Lou Gehrig's disease would have a tougher time with him. My mom was doing her best to keep his spirits up. She'd pin an inspirational quote on his pillow every night so he could dream inspiring dreams about kicking Lou Gehrig's disease in the nuts. He was going to live a long, long time with this disease. Hell, maybe he'd be the first person to beat Lou Gehrig's disease. He'd be like Magic Johnson and HIV. Maybe he'd even be the first person to live forever.

During this stretch, my mom was feeling pretty good, so she provided most of the care for him. They spent every second together and looked more in love than I'd ever seen them. They were happily designing the renovations to the house like they were planning their second wedding. They were holding hands and kissing all the time. It was sort of disgusting, really—a couple of dying fucks making out and shit.

Mid-May, my dad was out in the Bay Area to run the Golden Gate Relay, which started in Calistoga and went to Santa Cruz—a span of 199 miles. He had two legs of the race, one through Napa and one over the Golden Gate Bridge. His team members gave him the coveted Golden Gate Bridge leg because he was dying of Lou Gehrig's disease and they would've been dicks if they hadn't.

I decided to fly up to visit Abby and run the legs with him. Abby and her mom ran with us. Though he had finished the Boston Marathon a month earlier, my dad was clearly in worse shape. He couldn't tie his own shoes. His hands were barely working. His breathing was more labored. He couldn't undo his pants, so I had to help him go to the bathroom. Good thing I already had some experience dealing with his dick. We'd do run/walks, where we'd run about a hundred yards, then walk, then run. Then eventually we just walked.

The Golden Gate Bridge leg took place at two in the morning. They normally close the bridge down to pedestrians after 9 p.m. (probably to prevent people from tossing themselves off it), so having access to it was unique. I ran alongside my dad, the love of my life and her mom running on the other side, the bay breeze cooling our faces as the city sparkled in the background. I looked over to my panting dad, barely able to stand up but still trying to run.

“You sure you're okay to do this?” I asked as we slowed to a walk.

“Yeah. God, the city is so beautiful,” he said, not wanting to talk about his struggles. I started to weep as we walked. It was so hard to see him in decline, but I was thankful I got to spend this time with him. I knew this was the last run I'd take with him. I knew that we weren't going to have many more beautiful moments with each other before it got really bad. I wanted my poor dad to get better, not worse, but was finally starting to realize that that wasn't how Lou Gehrig's disease worked.

After our run, Abby and I went back to her place in Berkeley buzzing from the experience. “Your poor dad,” she said. “I'm so proud of him.”

“I am, too,” I said.

We fucked and then slept in the next morning.

*   *   *

In June, I flew out to Chicago to watch Greg graduate from Northwestern. It was his last taste of the good life before moving back home to Utah. I still had no official plans to move home. I had just been promoted at my job, and things were going great. I didn't want to give that up until I absolutely had to. Greg and Tiffany were sure to make me feel like shit for not committing to moving back.

“It's okay, Danny. Have fun in Los Angeles while I spend all the time in the world with Dad and become his favorite son,” Greg passive-aggressively joked.

“Yeah, we'll get him to write you out of the will,” said Tiffany in a rare attempt at humor.

“Last week, they made us dance for an extra two hours to get ready for our recital,” said Chelsea. “Two hours. Can you believe that?”

Jessica didn't say anything.

“Sorry if I'm the only successful sibling with a good job,” I fired back.

We all went out to dinner at a fancy restaurant on Rush Street to celebrate Greg's graduation. As we waited for our large table (we always had to wait because there were seven of us), I played with my dad's hands. He could hardly move them at this point. I uncoiled and recoiled his fingers. I didn't know what to say. My grandma Barbie, my dad's mom, was eighty-four and had some kidney issues. She had been telling us she was ready to go.

“So, do you think you or Grandma will die first?” I asked for some reason.

My dad got a little teary eyed and said, “I don't know. I hope we both live a lot longer, but probably Grandma.”

Greg overheard the conversation. He started to cry.

“Shit, sorry, I was just joking, making small talk,” I said.

“I know, but still, it's just—all of this is so sad,” cried Greg.

“Relax, Gregor. Dad's gonna live a long, long time, remember?” I said. “You haven't had that much liquid on your face since your last blowie.” I smiled at him, trying to get him to laugh. He kept crying. I was attempting to fight Lou Gehrig's disease with humor, but no one had the patience for cum-on-the-face jokes. Things were getting really serious.

And Greg was right. It was all so sad. The thought that we might lose a parent before a grandparent would have seemed ludicrous only a few months earlier, but now it seemed like a possibility. I don't know why I asked my dad this morbid question—probably because I'm an asshole—but it was the first time I'd outwardly acknowledged that my pal was going to actually die at the hands of ALS. My denial was officially beginning to give way to reality.

*   *   *

In July, we all went on what was depressingly billed as being our “last family vacation”—a twelve-day Mediterranean cruise that started in Barcelona and went to Cannes, Pisa, Rome, Naples, Pompeii, Capri, Florence, Venice, Corfu, and Dubrovnik, before returning to Barcelona. It was one of those luxury cruises full of a bunch of rich, spoiled assholes. We fit right in. We picked the cruise because it was the easiest way to see Europe. We just had to board the boat, get off to see the sights, then get back on.

My dad was getting worse by the day. His legs were still strong, but his arms and hands were very weak. Watching him try to give me a hug was like watching a four-year-old child try to lift a hundred-pound weight. The disease had also started a fierce attack on his diaphragm and lungs. He now had to be hooked to a bilevel positive airway pressure (BiPAP) machine while he slept, which essentially helped push air into his lungs. He was having more and more trouble eating, so it was decided that he'd get a gastric feeding tube inserted in his stomach right after the trip. Once that happened, all of his food would be in liquid form. This trip was his last chance to eat and drink whatever he wanted.

To top it off, my mom's cancer had flared back up like a bad case of herpes. She had been taking great care of my dad and dumping all her energy into him. It burned her out and allowed the cancer to sneak back up on her. This time around, the cancer was deemed more aggressive than her previous bouts had been. She was going to start “big guns chemo” right after the cruise. I wasn't sure what she meant by “big guns chemo,” but it didn't sound good.

The whole mess was starting to sink in for me in a big way. I had told my work about what was happening with my dad so I could try to get the time off for the cruise, even though I was out of vacation days. “It's our last family vacation,” I told them. “Morbid, I know.” They understood and gave me the time off, with pay. I still wasn't sure when I would need to come home to help out, but I knew the time was getting closer.

Thankfully, it was easy to drink on the cruise. They gave you this little plastic card that they'd swipe when you wanted anything. It didn't seem like real money. And they served a couple bottles of wine at dinner every night. I guess rich people like to be drunk most of the time. My dad and I ended up running up a booze bill of over three thousand dollars.

I tried to keep the mood light by cracking dark jokes as we saw all the European sights along the way. I thought if I could joke about this serious disease that maybe it wouldn't seem so serious.

“Don't get close to that thing or it'll fall on your unlucky ass,” I said as we looked at the Leaning Tower of Pisa.

“It could have been worse. They could have had Lou Gehrig's disease,” I quipped as we inspected the plaster-cast bodies of a couple of Pompeii victims.

“We should get someone to do a sculpture of you naked in a wheelchair,” I said as we looked at the
David
in Florence. “Your dick is bigger than his, even with Lou Gehrig's disease,” I added, reminding my dad that I had recently seen his dick.

We were all on edge. About two days into the trip Tiffany was acting like a know-it-all travel guru. She and BCB had been doing a lot of traveling since they started dating, so she thought of herself as an expert. She was bossing us all around, and I finally snapped.

“Hey, I've got a fun idea, Tiff: how about you stop acting like a bossy bitch for a few minutes and shut the fuck up?” I said.

“Fuck you. I'm just trying to help us see as much as we can,” she said. “It's Dad's last trip.” We didn't talk for the rest of the vacation.