Specific Instructions on How to Live a Successful Life
The week I got back home to New York after spending my junior year of college in England, two unexpected things happened. I got a phone call offering me an internship in Manhattan that I’d been rejected for months earlier and my dad was diagnosed with a brain tumor.
It wasn’t lost on me how odd it was that I began commuting into the city one week after my dad stopped. My father's morning routine for the last fifteen years suddenly became my morning routine. Drive to the station. Park in his spot. Wait on the platform. Get on the train.
I felt like a child playing dress up next to all the other grown-ups in their pantsuits and fancy shoes. There was a code of silence among commuters which meant they rarely spoke to each other, so my Dad created names and stories about the people he saw every day but never got to know. I knew if he were there with me, he would have pointed out people, whispering into my ear the story he made up for each of them. But he wasn’t there.
During my second week of work, I took the subway a few stops and then walked a couple blocks to Sloan-Kettering, the hospital where Dad was getting his biopsy. My feet were blistered and cut from the brand new heels I’d been wearing and I limped down the sidewalk, past the fruit stands, with their displays of strawberries and pineapple, the racks of brightly printed clothing and the rows of colorful embroidered slippers.
As I got closer to the hospital, I began to see people with bald heads, all different shapes and colors and heights. Some were smoking cigarettes, others were walking around the block to get some exercise; and a few were being wheeled around for fresh air. I smiled and made eye-contact with each person I passed. They all smiled back. People are kinder when death looms large, I’ve learned.
When I arrived, my mom and my brother were already in the waiting room sitting across from each other in stiff chairs. I sat down next to them and for a moment it was as if we were all waiting to board a plane. We just didn't know where it was going yet.
A couple hours earlier, a dime-sized hole had been drilled into my father’s skull. Now, there was nothing to do but wait. The only information we had was that he had been moved to the “recovery room.” That sounded hopeful, I thought.
Eventually a man in blue scrubs walked in and came right over to us. It wasn’t like in the movies, where they bring you back to a special room. He sat right down in one of the chairs facing us in the waiting area and began to talk.
I don’t remember his exact words, only the important ones.
Advanced. Malignant. Aggressive. Inoperable.
Glioblastoma.
“How do you spell that?” My mom asked and I listened too.
I didn’t know what any of this meant yet, but soon I would understand. This was not a “Which do you want first: the good news or the bad news?” situation. There was only one kind of news and it was the worst kind.
*
There were days when I was a kid when my dad came home from work and he was happy. On those days he would walk in the door loosening his tie and singing a new song he made up to a tune we all knew. On those days he’d stoop down and kiss the top of my head, breathing in the scent of my freshly washed hair. “Now that’s hair…” he would say.
But other times he came home tired, frustrated with work, sick of the hour-long train ride that marked the beginning and end of every day.
“This commute is killing me!” he said, on days like that.
“I calculated it,” he told us once. “I’ve spent about three hundred days of my life riding the train.”
I thought about this as I rode the train back and forth that summer. I didn’t mind the commute too much. I kind of liked the quiet time to read. But I’d only been doing it for a few weeks.
Three hundred days. Three hundred days, and then one day, he was just done.
*
His mother and father, my Grams and Pops, came down from Philadelphia to visit him in the hospital. When they arrived, Mom suggested that my brother and Pops take Dad for a loop around the hospital floor, as the doctors suggested he do to keep up his strength.
“C’mon,” Pops said, “Let's go for a drag.” We laughed. Pops almost died from lymphoma ten years earlier, so he could joke now in the way only a cancer survivor could.
I watched them, three generations of fathers and sons, walking down the gray corridor. My dad limped along, his father clutched one arm and my brother clutched his other. Three generations and yet something was off. This is not the way it was supposed to go.
*
After Dad came home from the hospital and the steroids kicked he started to improve. He spoke a little more clearly, walking more steadily. Our spirits soared.
He went in for another scan and the radiologist said the tumor was showing signs of “breaking up like a honeycomb.” We clung to those words. I heard him repeat them on the phone to his parents, his brother, his friends.
“It’s breaking up like a honeycomb!”
I repeated it too.
“Yup…that’s what they said. Like a honeycomb.”
One afternoon, shortly after the honeycomb news, I drove Dad to the hardware store because he still wasn’t steady or clear-headed enough to drive..
“How are you feeling?” I asked.
“I feel like a death sentence has been lifted,” he said.
Mom went to the drugstore and came home with a book of crossword puzzles for children. He struggled at first, but soon he was whipping through the puzzles. We were thrilled when he walked down the hallway and back again all by himself.
It’s amazing how quickly the definition of victory can change.
*
But the next time he went in for a scan, the news was different. The tumor was no longer breaking up like a honeycomb. Now it had tentacles and they were unfurling. Now we had a new image but this one we didn’t talk about. Now the tumor was like a monster, strangling its prey.
*
One night I volunteered to go to the store to pick up something my Mom needed. Dad wanted to come too, so he sat in the passenger seat as I steered us through the back roads of our small suburb. We were driving along a bumpy dirt road, and there was a dead squirrel in the middle of the road. By the time I realized what it was, there wasn’t time to swerve to avoid running over it’s already flattened body.
“Don’t drive over dead things on purpose,” he said, turning his head and narrowing his eyes at me. I looked over at him and then back at the road.
I was shocked but I didn’t say anything. Why did he think I would drive over a dead animal on purpose? In hindsight, it occurs to me how the sight of something dead, anything dead, might have been a lot. What is like for a dying person to see a body that has been shed, flattened, destroyed? I can’t begin to know. But at the time all I could think of was how his comment felt to me. And to me it felt like an indictment of my very nature.
How could he think that would be the kind of person who would drive over a dead animal on purpose? Didn’t he know that I was a vegetarian? Didn’t he know me at all? And if he didn’t know me now, would he ever know me?
We were running out of time for all that.
*
“If anyone can beat this, it’s you!” People used to say, as if surviving cancer was some sort of wrestling match or popularity contest.
I looked up glioblastoma online. Only twenty-five percent of people who have a glioblastoma live for over a year. Ninety-five percent don’t make it to five years. It is the deadliest brain cancer there is.
Spontaneous remission. I figured that was what would happen. My dad was the first in his family to go to college and then he went on to law school too. He was the first to earn a scholarship to his private high school and nearly forty years later he was one of the first to be inducted into the school’s Hall of Fame. He had set football records that still hadn’t been broken, though it was true that this was a technicality because they had since changed the rules. The point is, he had always been exceptional, so naturally he’d be the exception now too!
I read everything I could about miraculous recoveries and spontaneous remission. I read about a guy who claimed he survived a glioblastoma by eating massive amounts of shark cartilage. When I told Dad about this, he looked at me like I was speaking a language he couldn’t even begin to comprehend. (Years later when I was looking through one of the notebooks he kept at the time, I found the words “shark cartilage?” written in the shaky handwriting he developed after the tumor.)
At night, I sat on my bed and visualized like the books on spontaneous healing said to do. I pictured the tumor shrinking and shrinking. Breaking up like a honeycomb until it disappeared.
Poof! Gone.
*
The mood in the house was somber by then. The chemo wasn’t working and the one clinical trial that he qualified for hadn’t made any difference either. We were running out of treatment options. Things were starting to feel desperate. One afternoon, my mom called me into my parents’ bedroom.
“Dad is trying to say something and he thinks you might be able to understand,” she said. Dad was sitting against their headboard, legs stretched out on top of their comforter. I had never seen him like this before, on top of his bed but not under the covers.
“Okay?”
“If I die I want you to know…” he said, looking in my eyes. I waited. He sighed.
“If I die I want…” He took a breath and started over.
“If..I..die…”
“If you die…” I said back to him, thinking that maybe if I started the sentence he could finish it. He shook his head, frustrated.
“Get Grace.”
We called my sister in from the other room. He tried again, looking at her now.
“If I die….”
The three of us waited. We left space. Then we tried to fill in the blanks, to nudge his brain to land on the next part of the sentence.
“If I die…”
“You should…?”
“Please remember…?”
“Don’t ever forget…?”
Our guesses just frustrated him more. We were getting it all wrong.
“If I die!” He yelled, slamming his hand down on the bed.
We never did find out what he was trying to say.
*
It is what it is.
Towards the end these were the only words he could say and he would say them over and over. The phrase feels overused and cliche now, but those words from the mouth of a dying man seemed to mean something completely different. Stripped of the two things that defined him his whole life–his strong body and his quick mind–he was left only with the IT that is inside all of us, separate from anything we can hear or touch or see.
It is what it is.
I began to understand that there would be no spontaneous remission, no miraculous recovery. He had lived a good life, despite those three hundred days on the train. He had lived a good life because of them in some ways too. Now he would die quickly and painfully at fifty-four-years-old. It would be a tragedy. People would send notes and flowers and donations to a scholarship in his name. It was not the way the story was supposed to go. But it was the way it went.
*
After he died, my mom gave us a letter he’d written for me and my brother and sister. I like to think that he would have done it differently if it wasn’t for the tumor–the tentacles. But maybe it wasn’t the cancer that kept him from saying more. Maybe writing a goodbye letter to your own children was just too hard a task to face. Either way, the letter itself was hard to read.
To me, he wrote, “Joy, you’re great. It’s been a pleasure to watch you blossom intellectually.” The words sounded like something a teacher would write in the comments section of a report card. (A Joy to have in class!) Were these really his dying words for me? I wanted more.
In the last paragraph of the letter he addressed all three of us. “I wish I could give you specific instructions on how to live a successful life, but I’m not sure if my life has been successful. I know I was a moral person. I know I was loved.”
And that was all he wrote. He didn’t even sign his name.
*
In the living will Dad made years before any of us even knew the word glioblastoma, he gave instructions not to go to extremes to keep him alive if he wouldn’t have a good quality of life. As his illness progressed, the choices got harder. What were extremes? What was a good quality of life?
The doctors found another clinical trial down in Maryland. It had become difficult for him to even leave the house. He couldn’t walk or go to the bathroom on his own, and my mother wasn’t big enough to hold him. Traveling hours for these trials would have been nearly impossible. There was a miniscule chance that the trial would slow the tumor’s growth and prolong his life, but even then he would remain basically as he was now.
“If this is the best you’ll ever be, is this good enough?” My mother asked.
He answered quickly, or he tried to.
“Yes,” he wanted to say but he couldn’t get the word out so he nodded vigorously to make sure we understood.
Yes, it was good enough. It had been good enough all along.
*
I don’t know what my father was thinking in those last hours and days of his life. I don’t even know if he was lucid enough to reflect or even to hold a coherent thought. But I like to think there were moments when he was able to peel back from the pain, the fear, the grief that only someone who is counting down the days they have left can know. I like to imagine that during those brief, glittering moments he connected to that part of himself that is separate from any of the external things that defined his life. And I like to believe that during those moments he grasped what he spent so much of his life trying to grasp. What we all spend so much of our lives trying to grasp.
I like to think that the last words he was able to communicate were the ones he wanted us to know.
If I die…
It is what it is. And it is good enough.
-Joy Juliet Gallagher
Joy Juliet Gallagher's writing has appeared in Modern Love, Zibby Mag, The Isolation Journals, New Limestone Review, and more. She currently lives in Portland, Oregon with her two sons and is working on a memoir. You can read more of her writing at www.joyjuliet.com or follow @joyjulwrites on Instagram.