the goldfish went on vacationA MEMOIR OF LOSS (and Learning to Tell the Truth about It)
TRUMPETER BOOKSCopyright © 2007 Patty Dann
All right reserved.ISBN: 978-1-59030-428-0
Chapter One A Paper Clip
In the three days after our trip to the sheep farm Willem's personality began to change. He always had a bit of a temper, but one morning he asked if I had an "ink pen." He sometimes used different forms of English words, but when I handed him a ballpoint pen, because we didn't own ink pens anymore, he began to scream at me.
He agreed to go to a marriage counselor, who advised Willem to have a checkup. I sat with a furrowed brow in the examining room as the doctor took all of his vital signs. Willem was a marathon runner, in top condition, with healthy lungs and a healthy heart, and everything looked normal, but then the internist began to ask him questions.
The doctor held up a paper clip, and Willem said, "I know what it does, but I don't know the word for it."
English was not Willem's first language, but this was something else.
"I'm concerned. I'm scheduling a brain MRI," said the doctor quietly. "Immediately."
I dropped Willem at his appointment five blocks away and went to pick up Jake at preschool.
Before Willem got home, the phone rang. It was our doctor, who said softly, "I am sorry, but I have very bad news. Your husband has glioblastoma, which is the worst form of brain cancer."
Jake had opened the refrigerator and was pouring orange juice on the floor.
"Do you want me to tell him?" asked the doctor.
Jake was tugging on my sleeve to show me his handiwork.
"No, no thank you," I murmured. "I'll tell him. Tell me one thing. Is he going to die?"
"Yes," he said.
I'm not sure if I said "thank you," but that was the end of that conversation. I did not let myself feel any emotions. For some reason that to this day isn't clear to me, I sneaked into the hall closet, away from Jake, and called our pediatrician.
"I was just told Willem is going to die from brain cancer," I said as evenly as I could. "I don't know what to tell Jake."
"I'm so, so sorry," he said. "Call Sallie Sanborn. I worked with her at Bellevue. If anyone knows this stuff, she does."
In the middle of the night, while Willem and Jake slept, I got up and googled glioblastoma. I read to myself, "The patient will slowly lose all memory, as well as all bodily movement." I had a fleeting image of trying to push Willem in a wheelchair and Jake in his stroller and decided to give Jake's stroller to a pregnant friend. I knew I could not push my husband and my son at the same time.
Chapter Two Flowers
The next day, after our internist had told me Willem had glioblastoma, and after I said I would give my husband the news, I found Willem reading on the couch in the living room. He was rereading a novel by the Dutch author Bernlef called Out of Mind. He had given the English version to me for our first anniversary. It is about a couple in which the husband slowly loses his mind and the ability to speak.
I huddled next to him. "Why are you reading this now?" I said.
He shrugged. "Maybe it will help me. I'm having trouble with words."
"Yes," I said, and took a deep breath. "Do you want to know about the MRI?"
"What's that?" he said.
"The picture, the picture they took of your brain."
"Yes, thank you," he said. He had always been a formal man, but already his speech was different.
And then, as simply as I would say we needed a new rug, I said, "You have a brain tumor."
He nodded, and then went back to his book.
A half hour later, Willem called to me while I was in the kitchen trying to feed Jake pasta wagon wheels without weeping.
"What's it called, the tumor?"
I called back as cheerily as I could, "Glioblastoma," trying to make it sound like a lovely flower.
Willem's first surgery lasted four hours. I corrected students' papers as I sat in the over-air-conditioned waiting room. The surgeon came out, and I stood before him waiting to hear our destiny. "We got most of it out," he said.
I stood hugging myself and asked, "When is he going to die?"
"One year, maybe two," he said. Then he said quietly, "Very few people ask that question."
I don't know why I was so blunt. Of course there are miracles. Of course there are exceptions. Breakthroughs are made all the time, but I wanted to know the worst-case scenario. That made me feel more in control, even though I was acutely aware I was in control of nothing.
When I got home from the hospital, Jake was there with his babysitter, racing around the house and wanting to jump on his father as he always did. That night, as I put him to bed, he cried, "I hate Daddy sick. I miss my tall Daddy." Then he sighed and said, "Maybe the sun will come down from heaven and take the disease out of Daddy and give it to the rain and the clouds and he'll be all better."
Chapter Three Summer Camp
When I was ten years old, I went to Camp Whippoorwill, a camp in the Adirondacks that consisted mainly of Jewish girls and Christian counselors, with a similarly populated boys' camp situated neatly across the icy lake. I watched the conductor hoist my heavy trunk onto the northbound train at Croton-Harmon station and then let him pull me up into the car. I knew nobody else on the train or at the camp, and that night I slept in a cabin under the pines with five other girls.
I had trouble falling asleep, listening to the sound of the trees swaying in the wind, but finally I must have, because I woke up at 3:00 a.m. hearing the sobs of the girl in the bunk above me.
"Are you okay?" I whispered.
"No," she sobbed.
I pulled myself up to her bunk. We didn't turn on our flashlights for fear of the counselor's wrath, but we spoke in the dark. I wasn't even sure which girl it was.
It turned out her name was Jane. She is one of my closest friends today. Our children are friends.
That night, as she wept, she said, "I miss somebody."
"That's okay," I said, in an attempt to soothe her. "We're all homesick. Do you miss your mother?"
"Yes," she sobbed.
"Well," I reasoned, "you'll see her on visiting day. That's in four weeks."
"No," she whispered, "I'll never see her again."
She told me her mother had died. (It was years later that I learned it was from a disease called scleroderma, a cruel disease of the connective tissue. In the wisdom of the day, Jane had been told nothing.)
This is what Jane told me that night, as we clung together on the top bunk. She remembered her mother playing the piano. She remembered her mother sitting up in bed when she came home from school one day. She remembered coming home the next day and her mother wasn't there.
"They took her to the Mayo Clinic," said Jane solemnly.
I wanted to make a joke about it, asking if it was a place where they made tuna fish sandwiches, but I refrained.
"And then," said Jane, "my dad gave away all of my mom's things ... and we moved."
I knew, in my ten-year-old bones, that there must have been a better way to do things. I had no idea I would be in the position to try another way with my own child.
Chapter Four A Tricycle
Now that I had told Willem about his illness, I knew I needed to tell Jake, too. I decided it was time to call Sallie Sanborn for advice and to set up a time for her and Jake to meet. When I got her on the phone I gave way to nervous chatter and, instead of asking how to talk to Jake, I first asked why she was in this line of work.
"I'm not sure," she said. "I'm just always amazed to see how kids can handle things when they're dealt with openly."
I then had the courage to ask, "But what should I tell Jake?"
"Always tell a child who is losing a parent three things," she said. "One, tell them the truth about what is happening to the parent. Two, if the parent has a disease, name the disease. Three, tell them the doctors are doing everything possible and that they are going to give the parent the best medicine available."
When I hung up the phone with Sallie I went to Jake's room. I sat down on the floor with him, took a deep breath, and said, "Jake, Daddy has a disease in his brain. It's called a tumor."
Jake nodded and said "tubor," and we began to talk a new language, the language of illness, the language of dying, the language of living with it all. I realized that if Jake could learn the words Tyrannosaurus rex, he could learn glioblastoma.
The day of Jake's first appointment with Sallie, I left Willem resting at home. Jake rode his tricycle fifteen blocks with his sturdy three-year-old legs, with me racing behind.
Sallie's office is on the ground floor of a brownstone building on West Ninety-fifth Street. When we got there, Sallie, a beautiful, energetic blonde, was parking her pale green motor scooter, which endeared her to Jake forever.
"Come on in," she said, ushering us inside. I had been told she rented her office from a pediatrician, but I was surprised to enter the doctor's waiting room, which was a clutter of antique wooden toys and home to a real sheepdog, who was asleep under a chair. Jake was ready to move in. A welcoming nurse with a heavy Irish brogue greeted us.
Sallie's office is tiny but perfectly organized. Somehow she manages to keep a little sandbox on the floor, stuffed animals snuggled in the corners, books, a real doctor's kit complete with real syringes, a fleet of rescue vehicles, dolls, board games, and a stash of balloons for popping or filling with water, all comfortably within reach.
I sat with Jake that first day as they played together.
"I hate sick," said Jake.
Sallie handed him a stuffed dog, and he spent a lot of time intently bandaging one of the dog's legs.
As Sallie and Jake played, I sat on the floor in the corner watching them. We all would die, we all will die. Why should this be so difficult to talk about?
"I want to play cars," Jake announced, and he began to make a complicated jumble of a traffic jam with tiny matchbox cars all over Sallie's floor. Jake always had a passion for cars. His first sentence was, "I want cars."
Jake sat there crashing the cars together.
"It's hard when things don't go the way we want," said Sallie, as Jake smashed a toy ambulance into a tow truck.
"Call me any time," she said as we left. "It will be a bit of a roller coaster ride."
Chapter Five A Baseball Game
"Live in the moment."
"All you have is the day."
"We're all terminal."
These phrases ricocheted through my head. Some friends immediately looked up Willem's illness and forwarded their dire discoveries to me. Others told me it must be because he used a cell phone, even though he did not own one. "Blueberries," wrote a friend on a postcard from California. "The antioxidants will do it. Blueberries are the key."
Willem was a historian. He worked as the director of a photo archive at an international relief agency and had spent so long on his doctoral dissertation that I called him Dr. Footnote. And though he was a researcher, he never once looked up his disease and had no desire to join any kind of support group. He wanted to return to his job and work with his beloved photographs and papers, he wanted to write a book about displaced persons in World War II, he wanted to go to Prague for his fiftieth birthday, he wanted to take Jake and me bike riding in Belgium and run a marathon someday in Tokyo.
"I have no interest in cancer," he declared, "even if it has an interest in me."
Yet he knew what the outcome of his illness would be. It was his idea to call the cemetery where my grandparents are buried.
A woman calmly quoted prices over the phone. "Do you want a single, double, or triple site?"
When Willem was back on his feet, with a Nike headband covering his scar, and Jake was at preschool showing a squashed penny at show-and-tell, we drove out of the city to the bucolic cemetery on a hillside. I was nervous having Willem drive. I have always been nervous with him at the wheel. He had learned to drive as an adult in this country, because, when growing up in Holland, his mode of transportation was his bicycle. Now he loved "to put the pedal to the metal" and scream Dutch words of joy as he accelerated.
We arrived safely at the cemetery, and a gentle man listening to a Mets/Cardinals game on a transistor radio held to his ear showed us around.
"Now do you want to be buried foot to foot or head to head?" he asked, taking the radio from his ear for the briefest possible moment and pointing out where other members of my family lay.
After we mumbled something about "head to head" we took the proper papers to fill out, and my head spun wondering when my time would be. Afterward we went out for cheeseburgers and milk shakes, then drove back to the city, went home, and made love.
Chapter Six An Airplane
I had wanted a baby since I was eight years old. Sometimes it was tiny whispers behind my ears, and sometimes it was a longing like a wound, but I turned thirty-nine and still I was not with child.
People said to Willem and me, "Go on vacation."
To me they privately said, "Don't eat yogurt." "Don't think about it." "Stop running." "Stop swimming." "Do a handstand afterward."
We tried these things.
The morning I turned forty, I awoke and whispered to Willem, "Let's adopt a baby."
In fact, I had been dreaming of adopting a baby for a long time. When asked on my college applications what I saw myself doing in twenty years, I had written, "I want to have an orphanage and be a photographer. I am very interested in children whose parents have died or otherwise abandoned them." For years I had had dreams of walking into an orphanage and bringing children home.
On the plane to Poland to pick up Jake, I was so excited that I did not read a word or sleep a wink. We touched down early in the morning on May 20, 1996, in a misty rain. I was now forty-two years old. Willem was almost forty-five. We had a three-hour layover at the airport before we were to fly Lithuanian Airlines to Vilnius. We made our way to the cafeteria for sausages and scrambled eggs. Cher was singing "It's in His Kiss" over the sound system.
By the time we boarded the Lithuanian airplane, I was having an out-of-body experience. The plane was an old Russian-made military-looking aircraft like I'd only seen in very old black-and-white movies. We boarded the plane in the rear, and I felt like we were entering a cave. I banged the stroller up the steps as if I'd done it a thousand times, while Willem carried our bags.
We touched down in Lithuania at 4:00 p.m. It was one hour later than Polish time, and it was rainy and dark. The arrival terminal looked more like a bus station than an airport. The Lithuanian language sounded like the song of beautiful birds. We took a wild taxi ride, racing to the orphanage, or "children's house," as they called it, to meet our son.