Home Is Burning (38 page)

“I know, but I still want to die. It's time,” my dad said.

“Well, when? When do you want to die? Now?” my mom managed through the crying.

“September 22,” said my dad stoically.

“Wow, already have the date picked out? Fuuuuuuuuck,” I said.

My dad nodded. He meant it. This was clearly something he had been thinking about. It wasn't just a spur-of-the-moment decision. He didn't wake up and casually think, Say, what should I do today? Oh, I know, I'll decide to die. He couldn't fight this losing battle any longer. He didn't want to sit in a wheelchair trapped in his own body. He didn't want people wiping his ass. He didn't want to eat through a tube in his stomach. He didn't want to lie there and watch his family slowly wear down and go insane while they cared for him. He couldn't. He had no hope. This wasn't going to get better. It was time to finally give up.

I didn't really know how to feel. I had listened in on his conversation with Robin, so I wasn't super surprised. Part of me was relieved. My dad's death would be incredibly sad, but it would also liberate me. I could unpause my life. I felt guilty for thinking this way, but I was tired of all this, just like he was. I didn't want to become Vince Junior. I wanted to live in my own apartment in some other city working some job doing something else.

It had been outrageously difficult watching my dad slip into this debilitated state. He had transformed from seeming invincible to being crippled—he was a shell of his former self. This wasn't how I wanted to remember him. I wanted to remember him as the sturdy rock in our lives, that dependable source of love and comfort who bought me popcorn and beer at Jazz games. The Lou Gehrig's was threatening to forever change the image I had of my father, and I wanted its destruction of that image to stop.

He was also in pain—so, so much pain. Back in college at Berkeley, a friend and I once took a study break outside the Moffitt Library. There was a dying pigeon flailing about on the polluted, cigarette-butt-covered pavement. Many of the hippie Berkeley students looked on, concerned, wanting to do something to help. There was even talk of calling some sort of animal support unit to try to save this thing's life. My friend had grown up on a farm and was totally comfortable with the reality of death. He looked at me and said, “I really want to stomp that thing to death, put it out of its misery.” He obviously didn't, because Berkeley's student body would've executed him. But it made sense. End the pain. End the spectacle of death.

My dad's not a pigeon, but still, having that metaphorical foot stomp him to death seemed more humane than watching him suffer any longer.

“But Bob, what about never giving up? You're not going to just let this thing win, right?” my mom cried. My dad just shrugged. He was ready to go.

“Well, I think that's really shitty, Bob. Really shitty. You can't just leave us like this,” my mom said.

“It's time,” my dad said. “It's time. Please understand.”

“I think this is the bravest decision any of us has ever made,” said Greg.

“Shut up, Greg. Don't be an asshole,” said my mom.

Chelsea just sat there stunned. I'm sure not too many of her classmates spent their summers watching their father slowly melt away and eventually announce his own death date. I imagined how Chelsea would describe her vacation to her friends when school resumed.

“How was your summer, Chelsea?” a classmate would ask.

“Good. How was yours?”

“Great. My parents took me to California. What'd you do?”

“I danced and went swimming and my dad decided to die.”

I looked around at our surroundings: the sparkling, perfectly clear blue pool water, the rustling aspen leaves powerfully green in the heart of summer, the stillness of a peaceful mountain town. This place was meant for reflection. Maybe that's why my dad had chosen to make this proclamation here.

“You're probably the only person who will ever announce their death next to this fabulous pool,” I said.

“You're probably right,” my dad managed.

I did the math in my head. September 22 was roughly seventy-five days away. I grabbed another beer, popped off the top, and extended it to my dad. “You want a beer? Might as well live it up a little before you die.”

He smiled and tried to move his hands to reach for it, but couldn't.

“Well, if you're not going to drink it, I will,” I said, and started chugging it, hoping it would instantly numb me forever.

Though my mom was still crying, my dad looked relieved, surprisingly calm, as if a weight had been lifted off his shrunken shoulders. Must have been nice to know there was an end to all this. He must have been struggling with the “to be or not to be” question for some time now.

I finished off the beer and dove into the pool, hiding beneath its wavy surface for as long as my breath allowed.

We had seventy-five more days with my dad.

 

THE OFFICIAL LETTER AND SOME SUBSEQUENT QUESTIONS

A week after my dad made his poolside death announcement, we took him to meet with his neurologist, Dr. Bromberg, up at the University of Utah, to talk to him about my dad's decision to be taken off the respirator on September 22, 2008. Dr. Bromberg wrote this letter to my dad's general practitioner:

Dear Dr. Wood:

Bob Marshall, accompanied by his wife, his son Dan, and his caregiver Regina, was seen in the Motor Neuron Disease Clinic on 16 July 2008. He is a 55-year-old gentleman being followed for ALS and was last seen 4 July 2008.

History of Present Illness: Mr. Marshall has been on full-time artificial ventilation since November 2007. Prior to his being placed on a ventilator, he had episodes of shortness of breath. We had talked about ventilatory support prior to his going on the ventilator, including the fact that his weakness will progress, and at one point, he will likely make a decision to be taken off the ventilator. Since November, Mr. Marshall has become progressively weaker. This includes difficulty with speech, such that one could understand with great care and repetition, no arm movements, and inability to walk and now can only shift positions with his legs. He, therefore, needs full-time care. He has been receiving excellent care, and there have been no medical complications.

On today's visit, Mr. Marshall wanted to talk about when to be removed from the ventilator. He clearly stated that he has been thinking about this essentially full-time. He is very frustrated and does not want to be totally dependent upon other people, even though they express their willingness to care for him. He, therefore, has decided that he wanted to be taken off the ventilator sometime during the fall.

I explained to him how the process would be accomplished. We would likely enlist the services of hospice. He would be given sedating medication in high dose, such as benzodiazepam, and given morphine for any potential painful components. He would, therefore, be fully sedated and covered for any pain, and then the ventilator would be turned off. I would predict that he would pass away within minutes in comfort. Mr. Marshall acknowledged that he fully understood the process.

There was, understandably, a degree of reluctance on the part of his wife for Mr. Marshall to pass away. I emphasized that this should be his decision, and it represented a very courageous decision. His wife has a serious medical condition, and I reminded her that in the past, that if she had wanted to discontinue her therapy that he would have understood, and that I hope that she will understand if he wants to discontinue the ventilator.

Mr. Marshall also asked about organ donation. I had looked into this previously, and with respect to organ donation, the only organ he could donate ethically on the part of the hospital would be a kidney; if he were to do that, he would come in and donate one kidney and then go home, and then pass away as a separate issue. He could more easily donate cornea, skin, bone and tendon after he has passed away.

At the end of the discussion, I told Mr. Marshall and his wife that I would contact hospice and determine the procedure in clear detail. I would also contact the Transplant Service and determine how the above superficial organs could be obtained. I would also be happy to see him in the clinic at any time or make a home visit.

I tried to make some suggestions for Mrs. Marshall as how she might manage her feelings and those of their children.

Overall, more than 70 minutes were spent, all of it in counseling and coordination of care.

Mark B. Bromberg, M.D., Ph.D.

Professor of Neurology

The night after my dad's announcement, I couldn't sleep. I was too restless. I had too many questions. Usually when I can't sleep, I turn on the TV and let it lull my active brain to rest, or I masturbate. Masturbation is the original sleeping pill, after all. But even those tactics didn't work. So I got up and sat at the basement bar. I cracked open a beer and grabbed a pen. I had some questions on my mind. I took a big gulp of my beer and wrote away. Here's what I wanted to figure out:

How is one supposed to take the news of another's death? Isn't it strange to know the day someone you love is going to die? What do I say? Can I still tell cock jokes? Should I just curl up into a ball and cry? Can I go to a local titty bar and redeem this tragic news for a free lap dance? Should I run through the streets yelling it so everyone knows? Should I start calling my dad “Captain Un-Hook”? Should I write a bunch of rambling questions about it?

Should I film his last month? Is that too invasive? Would that be cool? What would I film? Would I just film my dad lying there counting down the days? Should I ask him life questions and try to extract all the knowledge I can from him while I can? Or would I just end up holding the camera and trying to steal the show by making shitty wisecracks that ruin everything?

How will my mom handle this all? Will she go even more batshit crazy? Will she be too sensitive to handle me calling her batshit crazy? Will she even be able to speak or will she be crying too much? After my dad dies, will she remarry? Who will she remarry? Do others still find her attractive despite the cancer? Will she still love yogurt? Will she call me up in the middle of the night and request that I move home? Will she overdose on Fentanyl? Will she continue living in our family house or move out? Will she travel and see the world? Will each kid have to take turns letting her live with us? Will we pass her around like an abandoned orphan? Will we have a calendar? Will one of us take her more than others? Will this cause fights and make us yell things like, “I had her all of November, asshole,” and create resentment toward her and each other? Or will my mom move on and write a book about her life and go on Oprah and have the world rally around her and cheer for her?

And how will my siblings handle this news? Will Tiffany manage to stay calm in a world without her ski pal? Or will she have that nervous breakdown that always seems to be on the horizon? Will Greg find someone who will advise and inspire him the way my dad did? Will Jessica get back into drinking despite being pregnant? Will all of this finally hit Chelsea? Will she, mid-dance-practice, break down and cry her skinny face off? Will we all forever be painted with a tragic brush? Will the Lou Gehrig's disease haunt us forever? Or will we bounce back and move on? Will we learn to live in a dadless world?

How many people will attend the funeral? Will friends from out of state come? Will it be one of those things where I don't say but feel, Well, this is shitty, but gosh, it was nice seeing Cousin Jonathan again? Will I be drunk? Aren't you always drunk these days? Shouldn't you get help for that? Will everyone know I'm drunk? What will I say when people say the whole “I'm sorry” bullshit? Should I be a dick about it? Should I look them in the eye and say, “Well, you should be because this is all your fault,” or “Sorry isn't going to bring my father back, now is it?” or “Yeah, it sucks, but I get his Lexus,” and start dancing around like I won a game show? Or should I just stare at the person and change the subject, saying things like “Feel how smooth my hair is”?

Should I get a new suit? Will everyone cry at the funeral? If people don't cry, should I look at them with a wet, red face and yell, “Why aren't you crying, asshole?” Should I poke people in the eye so it looks like they're crying? Should I laugh at the people crying and say, “There's no crying in baseball”?

Will I be asked to deliver a speech? If I do speak, what will I say? Should I purposely try to make people cry? Should I show a slideshow that starts off with pictures of my dad when he didn't have Lou Gehrig's disease and ends with pictures of him lying helplessly in a hospital bed to the song “Do You Realize
”
by the Flaming Lips? That would get everyone to cry for sure, right? Should I read some passage out of the Bible that doesn't really make sense and seems so out of place that people turn to each other and ask, “What the fuck?” Should I write my speech as though I'm running for high school president instead of laying my father to rest?

Or should I give a real speech that accurately reflects what a kind and caring and loving person my dad was? Should I not talk about his experience with Lou Gehrig's disease, instead focusing on his life before? Should I talk about how he met my mom and how he started his own successful business or how he traveled to a remote area in Austria called Hallstatt, which he considers the most beautiful place on earth? Should I suggest that he's going to a better place, maybe even Hallstatt? Should I talk about how he taught me how to play basketball and encouraged me to do what makes me happy? Should I then reveal that the only thing that makes me happy anymore is masturbation? Should I talk about how he would wake up at five in the morning to drive me to John Stockton's basketball camp? Or how he used to take me to all the Jazz games and give me the first stab at the popcorn?

Could I swear in a church? Is
ass
okay?
Fuck? Shit? Fart? Bitch? Bastard?
Could I give a whole fucking speech without using one shit-eating bad word?