Home Is Burning (3 page)

“Shit, but you're going to be all right, right?” I asked, clearly not really contemplating the magnitude of this news. “It isn't too serious?”

“I'll be fine.” I heard my mom crying in the background and muttering about how he wasn't going to be fine, about how he was going to die. “I can live a long, long time with this. Stephen Hawking has had the disease for forty years or something, so don't worry about me,” he said with optimism in his voice.

“But isn't Stephen Hawking, like, crippled, and in a wheelchair, and unable to talk, and always about to die?” I asked.

After a long pause, my dad said, “Well, the point is, I can live a very long time.”

“Well, shit, Dad. This can officially be placed in the ‘shitty news' file. Are you getting a second opinion?” I asked while polishing off my glass of wine.

“Yeah, we're looking into it. There are a lot of things this could be instead of Lou Gehrig's. It could be Lyme disease,” he said back.

“Fuck. Really? Lyme disease?” I had heard of that one.

“Hope I didn't ruin your trip. Is the weather nice?”

“Yes, it's always sunny and hot here.”

“Well, you should go back to the pool, or to a nice dinner,” he suggested.

“Yeah, might need to. Can I talk to Mom? I love you,” I said.

My mom got on the phone, still crying—a stark contrast to my dad's relaxed tone. She seemed convinced my dad was going to die any minute. I told her to settle down and wait for the second opinion before we shit the bed and went into crisis mode.

But this was major news. Our dad was the rock of our family. The stable one. The healthy one. The parent who wasn't going anywhere. We thought if we were going to lose a parent, that it would be our mom. This was wildly off script.

Part of why my mom was able to fight cancer so successfully over the years was because of my dad's willingness to be the solid figure who kept our lives running smoothly. My mom was a terrific parent, but for a lot of my childhood, my dad had to take over parenting duties while my mom was undergoing chemo. There had been no hesitation on his part. His wife had cancer. He needed to step up, so he did. He was Mr. Mom. He built an amazing home and life for us all. It was very close to perfect, minus the whole bit about my mom having cancer.

When my mom was sick and busy with her cancer fight, we looked to our dad for homework help, rides around town, advice on life, allowance money, etc. He partook in all of our stupid hobbies: skiing with Tiffany, watching and playing basketball with me, playing tennis and talking politics with Greg, eating expensive Chinese food with Jessica, and aimlessly chatting about dance with Chelsea—all with patience and genuine interest. He never raised his voice. He was a kind, peaceful soul who was impossible to not like. The perfect dad for a bunch of imperfect children.

I wasn't expecting him to go anywhere. I was expecting for us to always have our rock. But this news—well, it could change all of that.

*   *   *

Once I got off the phone with my parents, we called Abby's mom—who always seemed to be near a computer—to find out more about Lou Gehrig's disease. This was before I owned an amazing iPhone, so Abby's mom was always our 411 whenever we were lost, needed a restaurant suggestion, or wanted to know more about a terminal illness killing my father. She pulled Lou Gehrig's disease up on Wikipedia.

I started to take the whole thing more seriously when she said things like, “lives for an average of two to three years,” and “is considered terminal,” and “may require a wheelchair after it leads to paralysis,” and “many patients are on a respirator”—all of which I heard as: “Danny, your father and pal and road map to life is going to undoubtedly die soon and leave you a lonely bastard with a drinking and motivation problem.”

Just so we're all clear, Lou Gehrig's disease—named after New York Yankees great Lou Gehrig—is a neurodegenerative disease that slowly kills off motor neurons. Without these neurons, the brain can't communicate with voluntary muscles. So say, for example, that someone with advanced Lou Gehrig's disease wants to move their arm or leg: their brain would tell their muscles to move, but they wouldn't be able to actually move their limb because the message can't get through. It also affects the diaphragm, which helps draw air into the lungs. The disease progresses rapidly and leads to muscle atrophy, fasciculations, spasticity, dysarthria, dysphagia, and a bunch of other words I can't pronounce. Its more technical medical name is amyotrophic lateral sclerosis, or ALS.

A person with Lou Gehrig's disease can still feel everything, and their brain functions normally. They essentially become a prisoner of their own body. Some go on a respirator to extend their lives, but the respirator, on average, only adds a couple more years. Doctors are still not sure what causes it, and very little progress has been made in slowing its progression once it's diagnosed.

In other words, Lou Gehrig's disease is a real ugly motherfucker, and is pretty much a death sentence.

After hanging up the phone, I gave Abby a big, sad kiss and ran my hand through her perfect blond hair to help make me forget the tragic news about my dad, my buddy, my pal.

Abby wanted to take a shower before dinner, so I decided to reach out to my siblings in the meantime. I was the last to hear the news because I had been busy letting my brain turn to mush at the pool. I was closest with Greg, so I decided to give him a call first. I went out to our balcony with a glass of wine and dialed.

“'Sup, Gregor?” I said. I was expecting him to be relaxed. He is a calm, levelheaded person, having more of my dad in him than my mom. It was rare to ever see him worked up about anything. Though he does hate bugs.

But instead of exuding his usual composure, he started bawling. Shit is serious if Greg is crying. “Can you believe this shit? Why can't things ever stay good with this fucking family? I mean, isn't Mom having cancer enough for us to deal with?”

“Yeah, I know. It's fucked up. Dad thinks he'll be okay, though,” I said.

“Danny, get fucking real for a second. I looked it up on Wikipedia. This disease is a death sentence. We're going to have to take care of him. Mom can't do it.”

“I know, I read the Wikipedia page, too. But you never know. That kook Stephen Hawking has had this fucker for like a million years,” I said.

“This family, I swear we're cursed. I mean. Dad. Dad. This is happening to DAD. Not Mom. DAD.”

“I know. Well, let's wait for a second opinion,” I said.

“What's the point? He has it. And now we have TWO terminally ill parents. One hundred percent of our parents are terminally ill,” he said.

I didn't want to think about all this. I wanted to go back to vacation mode. “Guess where I am?” I said, changing the subject as I watched some shitbag golfer duff his approach shot.

“Where?”

“At the birthplace of your coming out,” I said.

“Oh, I love Palm Desert,” he said. We were silent for a second. “God, Dad's going to fucking die.”

After I got off the phone with Greg, I called Tiffany. She and I always hated each other: the old first/second child rivalry in full effect. She's a very serious person who doesn't like to joke around. She is prim and proper, and thinks we should all be the same. I'm less serious. Conversations between us would usually go like this: She'd say something. I'd make a horrible joke. She'd say something bitchy in response. I'd say something mean back to her. Then it would end. Maybe things would be different now.

“Hey, Tiff,” I said.

“Hey, Dan, you hear about Dad?” she said. She was crying, too. Really bawling her head off. Fuck, should I be crying, too?

“What? No. What happened to Dad?” I said as if I hadn't heard the news.

“He has Lou Gehrig's disease. He's going to be paralyzed and we're going to have to take care of him on a respirator. He's going to die before Mom,” she said.

“I was just kidding. I talked to Dad a bit ago. I already knew,” I said nonchalantly.

“God, can you not be an unfunny asshole for two seconds?” she said.

“As soon as you pull the stick out of your ass for two seconds,” I said back.

“I'm late for my LSAT class. I'm gonna go.”

“All right, great catching up,” I said. God, I was a fucking asshole.

I sent Jessica a text and asked her if she was okay. She texted back that she was okay and said that Mom was crying and freaking out. I told her that it was going to be okay, that things would calm down. Chelsea didn't have a cell phone at the time. This was before every dickhead over five was carrying one around. I figured that she was just focusing on dance, and possibly making a fart joke or two.

Abby got out of the shower, looking like a wet angel against the Palm Desert sunset. She put her arms around me. She seemed even more beautiful and perfect next to this horrible news.

“You okay?” she asked in her sweet voice.

“Yeah, I think so. I mean, this can't be for real, right? My dad can't have Lou Gehrig's disease,” I said.

“Yeah, maybe he doesn't. He's so healthy. He runs all the time,” Abby said and forced a smile, trying to play along with my denial.

“Yeah, I'm sure he'll be fine,” I managed.

We went to a steak dinner at a nice restaurant and loaded up on wine. I tried to put on a happy face, but I was mainly trying to comprehend what this news meant. It seemed so unreal that our family rock would go down like this. We had expected and even planned for my mom's death at some point. My mom always joked that she was busy picking out my dad's next wife. But for my dad to go? That wasn't possible. I figured the healthy bastard would outlive me and run a marathon on the day of my funeral.

He had always been there for us, and because we were all very spoiled, we were still dependent on him to help with our finances, fix any of our little problems, and just generally give us very grounded and sane advice about how to function in this complex world. He was good at life, and, with his support, so were we. This news meant we might lose the guy who had made our lives as awesome as they were. It might mean no more time-shares in Palm Desert. It was a scary thought.

And what would all this mean for my mom? Would she still be able to fight off cancer without my healthy father at her side? Or would the disease gain momentum and finally make its game-winning attack? And if my dad died before my mom, how would she function? She, even more than the rest of us, was reliant on my dad to keep her life up and running. Fuck, were both my parents going to die soon? Was I going to be an orphan? Little orphan Danny.

And what would happen to all my siblings? Tiffany, Greg, and I were in our twenties and could sort of look after ourselves. But what about Jessica and Chelsea? They still needed parents to guide them into college and adulthood. Would Jessica be able to hang on and get through high school? My dad always helped Chelsea with her math homework. Was she now going to suck at math?

And what would happen to me? My plan was to keep working at Abernathy MacGregor, then try to find something in the Bay Area so I could be close to Abby. I would move in with her, and then propose. Then we'd spend the rest of our lives together completely in love without a care in the world, and then probably get burial plots right next to each other so that we'd always be at each other's side. I know people get married when they're in their late twenties or early thirties these days, but I didn't think I was ever going to find anyone I loved as much as Abby, so why the fuck not get married sooner rather than later? Was this plan now fucked? Would I have to move home and take care of my parents?

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.