Home Is Burning (37 page)

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We got my dad back home and charged the wheelchair battery. We then took him outside to our gazebo. The gazebo had always been my dad's favorite spot on our property. It was surrounded by cottonwood trees and flowers, providing a perfect home for chirping birds during the day and crickets at night. It was where my dad had his grill, where he'd sip wine, watch the dogs play around in the yard, and think about his day while cooking food for his selfish family. During the summer, we'd eat just about every dinner out there. Dinners were important to my dad, the one time we were all together, free from distraction. My dad missed these dinners, not for the food—though I'm sure he would've loved taking down a steak—but for the unity and order they brought us.

My mom woke from her nap and joined us out on the gazebo. She always made a big deal of every holiday, even silly ones like Father's Day. Usually they were filled with gifts and cakes, but she only had the energy for a card this year. We all signed the card. It had a picture of a bear on it and it read, “Hi Daddy, Can you guess who's my hero? I'll give you a clue—He's strong and he's brave.”
[Open card to reveal another, taller bear wearing a cape.]
“He's the best Daddy—you. Happy Father's Day.” I thought it was weird as fuck. It was clear my mom had picked it out when she was wandering around high on Fentanyl. Our selfish asses should've gone to pick out the card instead of sending our poor mom to do it.

But the card was true. He was brave. He was strong. And he was a hero. This had been the worst year of our lives (so far). We were all tired and on edge and sick of thinking about death. We wanted our old lives back. We wanted to be brought together by dinner around the gazebo table instead of by a terminal illness. But had my dad not been brave enough to go on the respirator, he'd be gone. His heroic act gave us the gift of time together. Had he elected to not extend his life, I would've been in Los Angeles or San Francisco. Greg would've been in Chicago. Tiff probably would've been in Maine with BCB. But we were here, circled around our dad, spending time with him and with each other. Sure, most of that time was spent taking little digs at each other about the people we were fucking or the life decisions we were making, but time is time, regardless of how it's spent.

After reading the card, my dad smiled at all of us. He asked to be deflated so he could talk.

“Thanks. You've all been the best kids I could ask for. This hasn't been an easy year, but it's been so nice spending time with each of you,” my dad managed to say in his respirator voice. We smiled back at him. Tiff took one hand. Greg took the other. I stood behind him and rubbed his shoulders. My mom ate yogurt.

It was a nice moment.

I didn't know what to say, so I said, “Pretty weird Greg's fucking a gay Mormon, am I right?”

“At least I'm not doing ecstasy and fucking a girl with a boyfriend,” said Greg.

My dad smiled, enjoying his time with his family. Our imperfect Father's Day was perfect.

 

THE END OF THE HOPE CAMPAIGN

By early July, we were nearly eight months into life with the respirator. We were living out the hope campaign, the full never-give-up package my mom had outlined at the Marshall Family Christmas Summit—a night that now seemed as if it had happened twenty years ago. As the summer progressed, my mom really stepped up. Sure, she'd have moments of panic where she'd break down and cry and talk about how she couldn't do this anymore, how she missed how things used to be before my dad got sick. And sure, she'd have glimmers of insanity, like when the respiratory nurse, Jeff, was joking about how fat he was and my mom said, “You want to see fat, look at this,” and proceeded to pull her pants down, flashing her ass to the poor kindhearted Mormon. And sure, she was addicted to her Fentanyl patches the way a heroin junkie's addicted to the needle. But her hair was back. She'd learned how to work the respirator. She was active all day. She slept next to my dad every night, meaning Greg or I didn't have to do nighttime Daddy Duty anymore. Her spirits were up. She was doing pretty well.

This had been her plan all along—to get healthy enough to take care of my dad for a long, long time. But my siblings and I were starting to wonder how realistic this vision was. My dad was still getting a little worse every day. Unlike Vince Senior from the support group, my dad didn't seem to be plateauing. And even if he did eventually, how long were we going to do this? Was I destined to become Vince Junior? Vince Junior was, like, forty and still taking care of his father. Was this going to last another fifteen years?

Greg and I didn't know if we should start thinking about our futures or if this was a long-term situation. We felt that our lives were on pause for now—that we couldn't fully focus on ourselves until this nightmare was completely over. Everything was centered around my dad's health. Lou Gehrig's disease was still in the driver's seat.

Greg and I would hang out in the basement talking about all this, Greg with a cup of OJ and me with a glass of wine. Our basement was full of hobo spiders during the summer, so I'd kill a few as we talked. Greg was terrified of spiders, so he'd sit on the stairs and point them out.

“How long do you think Dad's going to do this for?” I asked as I whacked a defenseless spider with a pool cue.

“Oh my God, that was a big one,” he said.

“That's what he said,” I said.

“Not funny, and I don't know how long he's going to do this. Dad might outlive us … Oh my God, look at that one in the corner.” I walked over and crushed another poor spider.

“It certainly seems that way,” I said.

“We're going to be forty and still caring for him, like Vince Junior,” he said.

“You're probably right. We'll have kids by then who'll help us change his diaper.”

“Yeah, oh man … Holy shit, another one!” screamed Greg.

My mom was optimistic that she and my dad were both going to live a long, long time. “I'm great doing this for the next twenty years,” she said.

But that's not what my dad seemed to want. He was starting to lose hope. He was aware of the reality that he wasn't getting any better, that, in fact, he was only getting worse. There are winners and losers in every battle, and so far, Lou Gehrig's disease is undefeated. My dad knew this, even if my mom was trying to convince him otherwise. She'd try to push optimism down his trachea like fresh air.

“At least you can still talk,” she'd say. But his speech was becoming more and more labored, and he was harder and harder to understand.

“At least you can still stand for a couple of seconds.” But his trusty legs were too weak to hold him up. We'd gotten the Hoyer lift to get him in and out of bed.

“At least you have your communication device.” But his communication device was a piece of shit. The technology just wasn't there yet, and my dad seemed to have no real interest in trying to learn how to control the thing with a silver dot on his forehead, especially since he could still talk. It mainly functioned as a tool I used to tell blow job jokes to visitors.

“At least we can make your respirator portable so you can go outside occasionally.” But it was such a hassle, and it's hard to adjust to life being that difficult when going outside used to be as simple as twisting a doorknob.

“At least you have a comfortable wheelchair to get around in.” Good point. He couldn't argue with that one. That wheelchair did kick some major ass. What a dream!

Dad was also wearing down mentally. He had never been a consistent crier. He had always had a positive, “Life is so great. Let's make the most of it” attitude, but this situation had finally gotten to him. He was now either crying or on the brink of it almost all the time.

“Oh, come on, Dad. Let's not resort to being a baby about this,” I would joke as he cried. “So you can't move your body. Boo-fucking-hoo.”

But my dad wasn't amused. It wasn't funny anymore. It was the first time in my life I had actually seen him depressed. His shrink, Robin, was now making house calls. I wouldn't sit in on these sessions, but I could hear them talking through the door. I'd stand there like an asshole listening in. He would cry to her and tell her that he didn't know how much longer he could do this. She would console him and tell him how brave he was.

“I'm not brave. I don't know how much longer I want to live,” I heard him say. Poor guy couldn't handle the hopelessness of Lou Gehrig's. He wanted the pain to end.

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It was a Sunday. Regina hadn't been around that weekend, which meant that we had to do all the care. My mom was still having issues with Regina. She was convinced that Regina—having a broken heart from her divorce—had fallen in love with my dad. She probably had. My dad's pretty lovable. She would sit next to my dad holding his hand and talking about all her relationship problems. My dad was a great listener, mainly because he couldn't go anywhere. My mom was jealous and hated everything about Regina. I thought it was sort of adorable that my mom was still protective of her husband, even though he was glued to a hospital bed and near death—I took it as a sign of true love.

“That fat bitch Regina isn't here, so what do you want to do today?” my mom asked my dad. He just shrugged. He didn't give a fuck. He looked like a mountain of miserable sadness lying in a pile of grief and hopelessness.

Eventually, Greg, Chelsea, my mom, and I decided to get my dad out of the house and go up to our Park City condo. Jessica was in Thailand with Creepy Todd, and Tiffany was vacationing with BCB.

We figured we'd lie out by the pool and let ourselves be distracted enough to not think about death for an afternoon. You know, act like rich people without a care in the world, ignoring all tragedy to focus on relaxing. Making sure we applied enough sunscreen to preserve our white skin would be our biggest concern. It would be like nothing bad had ever happened to us, or was ever going to.

We made the thirty-minute drive up Parley's Canyon to Park City and got situated in the condo. We hung inside for a few minutes, mainly to just marvel at how nice it was. I slipped on a robe, feeling like the king of some castle I didn't deserve.

“I love being a rich asshole,” my rich asshole ass said.

We eventually made our way outside to the communal pool. I brought a few beers and stuffed them in the robe pockets, because that seemed like the thing normal, carefree rich people would do. Greg brought a book and lounged in the sun close to my dad. Chelsea brought some of those pool noodles that look like giant cocks. We sword-fought with them on the pool's edge.

We got my dad all set up in the shade. I downed a beer and dove into the pool, trying to be active and full of life. My mom sat at my dad's side, gulping down yogurt. They watched me splash around like a degenerate alcoholic with his brain turned to mush by wealth. Chelsea jumped in the water with me. I smacked her in the face with a pool noodle. She giggled and then went to sit in the hot tub, trying to put some distance between herself and her bully.

I got out and sat in a chair near my dad, letting the warmth from the sun and the light mountain breeze dry me. I popped open a fresh beer. I felt great.

“What a dream it is up here,” I said, looking around. “Glad you rich assholes bought this place for your rich asshole kids to enjoy.”

I glanced over to my dad to watch his reaction, as I do after most attempts to make people laugh. He usually forced a supportive smile, but this time he looked like he could win a contest for being the saddest person on earth.

“Shit, Dad, you look like you're going to explode with sadness,” I said, taking a slug from my beer, looking like I was going to explode from alcohol.

“Bob, what's the matter?” my mom said, also taking notice.

My dad's cuff was inflated, so he couldn't talk.

“Answer me, Bob,” my mom yelled.

“His cuff is inflated. He can't talk,” I said.

“Oh, shit. Sorry,” my mom said.

He mouthed a few words. We tried to read his lips, but that never really worked, so we deflated his cuff. Air began to pass over his vocal cords.

As he cleared his throat, my mom said, “What do you want, Bob? Can I get you something?”

“I … want … to … die,” he said.

And there it was.

All the work, all the energy, all the attempts to still make life manageable, had led to this conclusion. He wanted to die.

Every life ends in death. There's not one that hasn't. We knew it was coming, but still, to hear the words gave it a reality that was previously incomprehensible.

“I want to die,” he repeated, this time with more assurance. The respirator hummed and the hot tub churned out bubbles. Greg set down his book. Chelsea got out of the hot tub. We all circled around him. My dad's eyes watered up, and a couple of tears found their way out.

“You don't mean that,” my mom cried. Being such an advocate of hope all these years, she had never heard these words uttered, or probably even thought them. In my mom's mind, it wasn't supposed to happen like this. This story wasn't supposed to end with my dad's giving up. It was supposed to be a fight to the very last moment, to the moment when there was absolutely nothing more to fight with.

“I do mean it. I want to die,” he said. “I can't do this anymore.”

“Well, it's about time,” said Greg, trying to make a joke of the situation.

“I'll care for you for the rest of my life, Bob. Don't do this,” said my frantic mom.

“It's time. I want to die.”

“Fuck you, Bob. You can't give up,” my mom said, already looking as though someone had hit the crazy-widow switch. Tears streamed from her eyes, causing her makeup to run down her cheeks. “You've got to keep fighting. We've all worked so hard to keep you alive. You're not a quitter. You've got to have hope. Bob, you just can't leave me.”