Home Is Burning (6 page)

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.

The next day, our cleaning lady, Stana, stopped by the house with some chicken noodle soup and potato salad. I once lied to her and said I loved her cooking, so now every time I was in town, she'd make a massive pot of soup and a giant bowl of potato salad. She spoke in blunt, broken English with a thick Polish accent.

“Danny, you is believin' Daddy is sick, too?” she asked as I picked bones out of the chicken noodle soup, trying my best to act like I was enjoying it.

“Yeah, crazy, but who knows. He might last a while,” I said with forced optimism.

Stana just shook her head. “Daddy is sick. He get way, way worse. Soon he be…” she pointed down to the ground to imply death, like six feet under.

“We'll see. He's still pretty strong,” I said.

“Danny, Daddy is die before Mommy,” she said.

It was starting to seem real. There was no denying that my pal was getting worse.

*   *   *

In mid-April, it was finally time for the marathon. I flew to Boston to meet up with the rest of the family. I was more excited that the Hyatt we were staying at had a steam room and hot tub than I was for the marathon. I was beginning to think my dad had put too much pressure on himself to run the race. His health was clearly waning, but with all the news stories and articles, it was impossible for him to back out. I wanted him to not run. I wanted him to say fuck it and quit.

But I showed up to support him. Throughout the weekend, it rained like I'd never seen before—the wind blew our umbrellas inside out and the downpour drenched us in seconds. Say what you will about L.A., at least we never have to deal with that bullshit. I was hoping they'd cancel the race due to the weather. But it cleared up by Monday and my dad was raring to go.

On race day, Greg, my mom, and I were loaded into a CBS News van to follow my dad around. They wanted ample footage for the report. Greg and I were awarded the privilege because Tiffany, Jessica, and Chelsea were interviewed for the news clip, and my mom wanted to be fair. We'd get out and see him at the ten-mile marker, then the fifteen, then at the finish line.

The driver and the cameraman didn't seem very interested in my dad's story. Anytime my mom would try to tell them what a horrific disease ALS is, they'd instantly change the subject.

“So they say people with Lou Gehrig's disease usually only last two to three years, but we're hoping Bob can make it longer,” said my mom.

The cameraman nodded, then turned up the volume on the Red Sox game that was playing over the radio. They were up 6–1 in the first inning against the Angels.

“Wow, you believe that. Six–one in the first inning,” said the cameraman. It was clear that they didn't like to talk about anything tragic. I sort of admired their ability to block out sadness, but I was also sort of sickened by it. Was that what my denial over my dad's illness looked like?

We got out of the van and stood on the sidelines sipping on our Dunkin' Donuts coffee as healthy people darted by us. Though I'd probably blow my brains out before running a marathon, I actually quite enjoy watching them. Marathons have a distinct energy and collective effervescence that I find exciting. The Boston Marathon is particularly thrilling because of all the cheering drunks, and everyone seems to be running for some cause. It really is a spectacular display of humanity.

Finally, my dad and his pals emerged in the distance. I'll admit, it was inspiring to see my old, kindhearted dad smiling and waving as he saw us cheering him on from the sidelines, even though he was hunched over and clinging onto his three friends for support. Running the thing might have been a medical mistake, but it made him as happy as I've ever seen him, so it was worth it. He ran to the sideline and hugged my mom. The two cried in each other's arms. “I love you, Bob. Never give up,” she said.

“I love you so much,” he said back, and then rejoined the race.

“Give 'em hell,” my mom shouted after him.

“Think the Sox have a legit shot at the pennant?” asked the aloof cameraman.

My dying dad finished the race in six hours, twelve minutes, and fifty-seven seconds—roughly two hours and thirty-eight minutes slower than his time at the St. George Marathon, which he had run only seven months prior. If that didn't prove how fast the disease was progressing, I don't know what would. We all cried as he crossed the finish line, his arms linked with those of his devoted friends.

After the race, we all went back to the Hyatt and drank champagne while my dad wrapped himself in one of those shiny, post-marathon Mylar blankets.

My dad's younger sister, Sarah, his sister-in-law, Martha, and a couple of our cousins had surprised him by coming to watch the race. There was no love lost between my mom and my dad's family. She thought they were a bunch of rich-bitch, blowhard alcoholics who weren't supportive enough of her when she got cancer. In her opinion, they were only around for the good moments in life and not the bad. She was really upset that they had shown up.

“They can't just pop up when they want to,” my mom said. “This is a special moment for OUR FAMILY. Fuck those blowhards.”

But my dad wanted to see them. He loved them despite my mom's hatred, and this day was about him. I always loved my dad's family—maybe because I also loved drinking and acting like a rich bitch. So my dad tasked me with calling them and inviting them to come drink champagne with us.

They now stood at one end of the hotel room chatting with him and drinking, while my mom vented on the other. I hated that they didn't get along with my mom. Family should always be a good thing, not a bad.

“We're so proud of you, Bobby,” my aunt Sarah said, rubbing one of her older brother's bony shoulders.

“Thanks. I'm excited to see the CBS report,” said my dad.

“Us, too. I have Jerry recording it back home,” she said. Jerry was her husband.

Eventually, my mom shooed everyone out. The party was over. It was just us.

“I can't believe those fuckers had the balls to show up,” my mom said of my dad's family after they left.

My dad was so physically exhausted from the race that he couldn't lift up his arms. They hung to his side like broken tree branches. He was sweaty and salty from the run. He needed a shower, and there was no way he could wash himself.

“I'm not washing my dad's balls, Mom,” I said when she suggested I help him shower.

Unless they're drunk or involved in an act of passion, most people are shy when it comes to someone else touching or even looking at the parts of their body they've been trained to tuck away from the world. My dad is a person. He was thus reluctant to have his privates handled by others. And he certainly didn't want me of all people to help him shower. That was not within the bounds of our relationship.

But my mom insisted. “Don't be an asshole, Danny. You're both guys. You both have dicks. Get over it,” she said.

“No, DJ doesn't need to do that,” my dad said.

“Bob, you can't even move your fucking arms,” my mom reminded him.

“Yes I can,” he said as he tried to lift his tired arms, but couldn't.